Breast Cancer Peer Support Q & A
I have had a lumpectomy and a re-excision surgery and I’m waiting for results in four days. I am feeling very depressed and do not have support of several friends who I thought would be there for me. This makes me very sad as I was there for two of them when they had an illness. I am struggling alone.
Sariel, December 2013
Please know that you do not have to go through this alone. It is not uncommon for friends and family members to retreat at times during a loved one's cancer diagnosis because they are dealing with their own feelings about it too. They may not want to say the 'wrong' thing, or they may not feel strong enough themselves to be your support. This is why we recommend connecting with others outside your circle of family and friends for support and understanding. Survivors in a similar situation or with health professionals for a source of support and understanding. There are many online, telephone or in-person support groups available. Additionally, there are organizations that provide professional counseling and support. Please contact the Cancer Resource Center at (415) 885-3693 to speak with a Resource Specialist who can help you find support during this stressful time.
Wishing you all the very best,
Peer Support Team
Is it possible not have any symptoms of breast cancer? I went for my yearly mammogram a few weeks ago. They called me back for a closer look of my left breast after which they did an ultrasound. I am still waiting to hear what the ultrasound showed.
Worried Senior, October 2013
It is understandable that you are anxious while waiting to hear back about your ultrasound results. This is probably one of the most stressful times because you do not have any information on which to take action. However, you are being diligent in doing your yearly mammogram and early detection is one of the most important factors in predicting the prognosis (outcome). The goal of screening exams for early breast cancer detection is to find cancers before they start to cause symptoms. Once you get your results back, you will be able to take necessary action and we can help you find information and resources to support you along the way. Please do not hesitate to contact us again when you have your results.
All the best to you,
Peer Support Team
I am a 39-year-old, both of grandmothers suffered from breast cancer. I have just finished six months of chemotherapy and am now getting ready to have a double-tissue mastectomy. I am normally so optimistic but I have lost so much of my positivity. I feel really alone now and don't want to let my new husband and amazing 16-year-old son see my sadness. I have tried to join local support groups but they seem to do nothing for me.
Elena, August 2013
We are sorry that you are going through this. It must be a very difficult time for you. It is recommended that you connect with your medical provider about these feelings of sadness. They might be able to connect you with more information and assistance. While you may be concerned about how your husband or son may feel, they are also concerned about you and want the best for you. Peer volunteers often describe the importance of sharing and connection and how these can alleviate the heavy heart.
If you have any further inquiries, please do not hesitate to connect with us at email@example.com. We wish you the very best.
Peer Support Team
My wife has experienced enlarged lymph nodes and bloods clots since June. We have been in the hospital to clear the clots. We have done PET scans and an MRI on the breast. We need a biopsy of the breast and lymph nodes, but the first opening for an appointment is two weeks away and then it takes five days for the results. We feel like time is slipping as she may be stage 3 or 4. How can we find a quicker way to get a surgical biopsy and results so we can work on saving her life? I need some ideas on how to expedite this. Thanks for any help.
Rich, August 2013
You sound like you are doing a great job of supporting your wife through this difficult time. I am sorry to hear of her medical problems. The time that it takes to get biopsies scheduled often feels way too long, and I understand your wanting to get the diagnostic tests completed so that you both can move forward with treatment for your wife.
It took at least a week for me to get my biopsy scheduled when I had an abnormal mammogram seven years ago, and then I had to wait 14 days for the biopsy results. Those were the two longest weeks of my life. Then I had to wait another six weeks before my lumpectomy was done.
I understand your fears about the elapsing time and how that might decrease her chances for a good outcome. From my understanding, I think many people nowadays generally have to wait a few weeks for the diagnostic tests to be completed.
Best of luck to you and your wife during these difficult times.
I had breast cancer, stage 2, on the right breast. My surgeon suggested to do a bilateral mastectomy, which I agreed to do. Last year, in July 2012, my life changed and I went through the most painful stage of my life. In June 2013, I had my DIEP reconstruction. I'm still recovering. I considered myself very lucky because no chemo nor radiation were needed, but I have to take hormone therapy for who knows how many years. I am afraid to look for professional help to deal with my emotions. I'm always thinking of what other people may say or think. My husband is a great support during those difficult days, however, he is getting hurt too, seeing me in constant pain. I am still healing from the reconstruction and I will have two more surgeries in order to correct the breast symmetry. I feel alone and sad most of the time. Right now, I am taking depression and anxiety pills, but it doesn't help to forget what I have been through. Thank you.
Lisa, July 2013
I am so sorry you are going through this. Cancer can make the most upbeat and optimistic people find themselves struggling with depression. However, hopefully, things will get better. It takes time and it is normal to feel down. In fact, for me, the hardest period was the time right after active treatment. This was the time where my focus switched from "fighting" the disease to worrying whether I had made the right treatment decisions. Recovering from DIEP reconstruction can be quite lengthy and painful in and of itself. On top of that, there is all the accumulated angst and fear that you had to overcome in order to go ahead with treatment.
Regarding seeking professional help, please don't hesitate. You could talk to a social worker first. At my cancer center, there was one who dealt specifically with the oncology patients and she was amazing. Many of the women went to see her on a weekly basis, even the ones who were also treated by a psychiatrist, concurrently. The social worker should be able to help you with referrals, from psychology to psychiatry, all the way to art therapy and meditation classes. Seeking professional help should not be seen as a weakness, rather, it is the responsible thing to do. It is wonderful that you have such a supportive husband. I can tell you to not feel guilty about burdening him. I, too, was incapable of letting my husband take care of me. This is why I found myself not telling him how much in pain or scared I was. Seeing a professional allows you, at the very least, the opportunity to say what is really on your mind without worrying about burdening the people you love. Also, if you feel embarrassed for seeking help (which you shouldn't) nobody has to know.
Join a local or online support group. You do not have to feel alone. I have found that it is such a relief to have a group of women, all at different stages of cancer treatment, with whom to discuss any issues, concerns or simply, to discuss about daily life. My best advice may be to give yourself permission to be upset: you have gone through quite an ordeal and need to process everything. Doing so with a mental health professional is nothing to be ashamed of. As for myself, I additionally found it helpful to immerse myself in nature, watch funny DVDs, and eat healthy food (lots of fruits and veggies).
Finally, regarding your concern about the hormone therapy, personally, I have been on Tamoxifen for over 4 years and only had mild side effects from it in the first year. Splitting the dose between morning and evening was really helpful to relieve some of the side effects. I'm wishing you lots of health in the future.
All the very best,
I would like to talk to someone who is or was taking the drug Anastrozole. I am having trouble deciding if the side effects are worth it?
Debbie, July 2013
Thank you for posting a question on the UCSF Online Peer Support website. You mentioned that you were interested in speaking with someone for support. There is a phone peer support program, which matches peers to share their experiences with certain cancer treatments. However, no medical advice is offered. Please call the program coordinator at (415) 885-7801.
Peer Support Team
I am a 32-year old female, diagnosed in May 2013 with stage 3C triple negative breast cancer. I have no prior family history of cancer of any kind. I have been healthy my whole life, so this has completely come out of left field. I am about to finish the last of my 4 bi-weekly Adriamycin/Cytoxan cycles. Then, I will have weekly Taxol for 12 weeks. The progress has been slow. I am continuing to stay positive, hoping for the best. Are there any survivor stories out there from women my age with a similar diagnosis? Or do you know of any support groups for women under 40 in the Bay Area, California?
Dana, July 2013
Congratulations on getting through some of the hardest parts of your chemotherapy: Adriamycin and Cytoxan! In my experience, the weekly Taxol was much easier for me. I was diagnosed with triple negative breast cancer (TNBC) 7 years ago and had the same chemo regimen. Unlike you, I was post-menopausal at diagnosis.
As you probably know, the percentage of women with breast cancer who have TNBC is quite low, probably less than 15%, I think. I don't know of any support groups specifically for women with TNBC; however, there is a woman who has been cancer-free as long as myself who writes an online newsletter called "Positives about Negative".
The UCSF Breast Care Center has monthly forums about a variety of breast cancer topics. TNBC is discussed frequently. This is not a support group but rather a forum that gives information. You can get on the mailing list by emailing Amy De Luca.
To find local support groups for younger women with breast cancer, I would contact a cancer center and other local cancer centers such as UCSF, Stanford, CPMC, etc. There is also the Bay Area Young Survivors organization. They hold support meetings.
Best of luck to you. You have completed some of the hardest parts of chemotherapy and will hopefully be feeling better physically. The shock of diagnosis does take some time to get through. Stay strong!
I am 15 years cancer-free after stage 2b breast cancer with six nodes involved. I had my yearly blood work done and my 27.28 tumor marker test was up to 98. My oncologist is not overly concerned and I have to get the test re-done in two weeks. I previously had some dental work done and had just started an antibiotic. I am terrified I am having metastasis. I am asymptomatic and my CBC and liver and kidney tests were normal.
Lisa, June 2013
I am so sorry you are going through this scare. I hate how breast cancer can follow us and scare us for so many years after the initial diagnosis!
Regarding the tumor markers, all I can tell you is that all of my oncologists (I have had to move quite a bit) are against using these tests. I have been told that most of the time, they are neither specific nor sensitive. That is, they are known to give false positives: where high levels of tumor markers show up in lab tests, when in fact, there is no metastasis present. They also give false negatives: when tumor markers are in the normal range despite the presence of metastasis.
I would trust your oncologist's advice. Other than that, the way I deal with such scares (I have had something show up on a liver scan that gave me quite a scare and luckily turned out to be benign) is to focus on the fact that I am feeling fine right now and that is all that I can ever know. I try to watch funny movies, relax, go out with friends and I also remind myself of Mark Twain's quote: "I am an old man and have known a great many troubles, but most of them have never happened." I am hoping that this trouble too, will never happen, and that in two weeks your markers go back down and never go back up again.
Lots of hugs,
Is there financial help for single women with breast cancer?
Mary, June 2013
We are sorry that you are going through a difficult time. The Susan G. Komen website has some helpful information regarding financial assistance for breast cancer: http://ww5.komen.org/BreastCancer/FinancialResources.html
Also, there are organizations that offer small grants to cancer patients. Please take a look at the following and please check with the organization regarding availability.
All the best to you,
Peer Support Team
I am a triple-negative breast cancer patient. I'm a three-time survivor. My cancer was in the breast, the lungs and now the brain. I also have a spot on my bone. Are there any success stories out there for me?
Patricia, June 2013
You sound like a fighter to me. Your surviving metastatic breast cancer so far is indeed a feat of strength. Fortunately, there has been more recent research regarding treatment of metastatic triple-negative breast cancer with many new and diverse drugs. I hope that you are hooked into a good cancer research center with access to all the possibilities of treatment. Keep looking forward! I was diagnosed with triple negative, stage II breast cancer 7 years ago. I have not had any local or metastatic recurrences. I hope that your disease soon stabilizes.
Information about other patients and their experiences during treatment and recovery are posted on the UCSF Medical Center website at www.ucsfhealth.org/patients. Click on the letter "B" for breast cancer patients. Hope the information is helpful.
Peer Support Team
My sister had surgery and radiation for a stage 2 breast lump just over 1 year ago. She is now feeling soreness in the site. Should she be worried?
Firstlove, June 2013
It sounds like your sister is doing well one year after her breast cancer diagnosis, surgery and radiation therapy. I had stage 2 breast cancer with surgery, radiation therapy, and chemotherapy 7 years ago.
The soreness could be caused by a variety of reasons such as the pulling of a muscle from activity or coughing. If the pain persists, it makes sense for her to see either her regular primary care provider or her breast cancer provider for an evaluation.
How can I be supportive of someone with cancer that lives far from me?
Anonymous, May 2013
You may be supportive by just being there and continuing your normal means of communication and support. Just because the person has cancer does not mean that he or she is different than in the past. Remember to not shut the person out. include him or her as you always do. Maybe you'll want to do more than you did in the past. If so, ask what the person might need from you. You could also be creative and maybe surprise the person from time to time with a special call. Regards,
I am an 18-year breast cancer survivor. Every year, I go for my annual mammogram and sometimes an ultrasound, should there be something out of the ordinary. Last year, I had a biopsy and a 3-month follow-up for what turned out to be scar tissue. When I had my annual mammogram yesterday, they did their usual 4 pictures. It seemed like a long time for the technician to come back in. She said she needed one more picture. She also said that for every few years they will do an image of the scar because "it's standard procedure." She took one image and didn't leave to show it to a radiologist and said I could go. I wish I could shake this fear but after last year, I am finding it difficult.
Cindee, May 2013
Dear Cindee, I completely understand what you are going through! Having just had a biopsy last year must have brought back all of the previous cancer memories and fears. Hence, anything out of the ordinary this year must be nerve-wracking.
What I can tell you from my own experience, having just dealt with a local recurrence, is that the radiologists take us previous cancer patients very seriously. I had also experienced many extra images at most of my previous mammograms (scars, dense breast tissue). However, this time, the radiologist came to see me right away, explaining that there were three, 1 mm calcifications. She then told me that she would usually recommend to have it re-checked in 6 months, however, due to my previous cancer, she recommended I get the biopsy done right away. It turned out to be cancer in situ.
My point is that a good health care team would let you know of any anomalies right away. Nevertheless, what I always like to do is to obtain the radiologist's report as soon as it is available and read it myself. If I have any questions, I usually contact my oncologist and try to get them clarified.
Wishing you many, many more years cancer-free and scare-free. All the very best to you.
I had estrogen-positive breast cancer in 2005 with a lumpectomy, 33 rounds of radiation and Femara for 5 years. I had a mammogram last month and then another mammogram on the other breast and then an ultrasound. I had a biopsy a few weeks ago and they found me to be estrogen-positive, progesterone-positive and Herceptin2 (HER2)-positive. They did not call it a tumor, but a mass, located very deep, almost on the chest wall. The mass is about the size of a quarter. I was told by the biopsy doctor that I would have surgery, chemotherapy and radiation. So, I know this cancer treatment will not be easy. Can you give me any ideas about what to ask my surgeon or any ideas about what to expect? The HER2 sounds so scary and I am just hoping it has not gone into my lymph nodes. I just need your thoughts on this. For the first time, I am really scared for my life. I'm 66 years old and want to continue working, as I love my job.
Janis, May 2013
My first thought after reading your message was you need to talk with your oncologist and surgeon to find out for sure what treatment you'll need. You may not have to do everything the biopsy doctor suggested. I know it's scary. I had a mastectomy, reconstruction and chemotherapy back in 2004. It wasn't easy, but I made it through with support from family and friends. I also thought I got really good care at UCSF. My advice is to think, live and completely embrace healthy thoughts. I trusted my doctors and their care and tried to look past the treatment to when I would be well. I have been cancer-free now for 8 years with no recurrence. If you feel uncertain, a second opinion is never a bad idea.
For information on Her-2, there are several books such as Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer." You may also find some helpful information on Breastcancer.net and from the National Cancer Information Service.
I am sending you good wishes and healing thoughts.
I have liver cancer and I have been told there is no cure and that chemotherapy might give me 2 years and without this, less than 6 months. My question is, how do you stop the emotion of crying when you want to spend your last days enjoying family? I hope it isn't a ridiculous question but I find it very hard to talk to anyone about it.
Danielle, May 2013
Dear Danielle, This is definitely not a ridiculous question. We are sorry that you are going through this. We know that it is a difficult time. Many peers would encourage talking to others about the feelings that you are going through to help alleviate the isolation and pain. Also, it's good to communicate your feelings with family and friends. Here are two resources to look over regarding communication with loved ones about cancer — www.cancer.org, the American Cancer Society website, and www.cancer.net, the American Society of Clinical Oncology website.
If you live in the San Francisco Bay Area, UCSF Medical Center has a general cancer support group on Wednesdays. Please contact Patty Moran at (415) 353-9745. If you are need of other resources, please contact the UCSF Ida and Joseph Friend Cancer Resource Center at (415) 885-3693. If you don't live in the Bay Area, the American Cancer Society has information on other programs and services. We hope this information helps.
Peer Support Team
I was diagnosed with stage 3, triple negative breast cancer in 2011 and had 6 rounds of TAC (Taxol, Adriamycin, Cytoxan) chemotherapy, a bilateral mastectomy and 33 radiation treatments. I completed treatment in 2012 and I don't understand why I feel more tired now than I did a few months after completing treatment. I just had my CT and bone scan and both were negative. I just do not understand this complete lack of energy.
Deborah, April 2013
Dear Deborah, I am sorry that you are experiencing such ongoing fatigue. I am glad to hear that you are doing well and that your scans are all negative. Please remember that you had a lot happening to your body last year: a bilateral mastectomy, chemotherapy and radiation therapy. Sometimes, we feel more exhaustion after the treatment rather than at the time of the causative factors. You had much to get through, and you did it. Now that treatment is over, you can let down your defenses and feel all that you have been through.
I had stage 2, triple negative breast cancer treated with lumpectomy and the same 3-drug chemotherapy and radiation. I finished treatment in the fall and probably still felt tired at times the next spring. I am out 7 years now.
Here are a couple of websites that address post-cancer fatigue — the American Cancer Society has a discussion board where patients share their experiences and the National Cancer Institute has information on fatigue. If your tiredness persists, talk with your health care provider about it. Best of luck to you.
I had a very successful healing after my treatment of chemotherapy, lumpectomy and radiation for my Stage III, aggressive breast cancer, but I am now struggling with rehabilitation. I finished radiation in May 2012 and was put on tamoxifen. I also take midrotin and levothyroxine. I blame tamoxifen mainly for my long list of side effects. I am seriously debating whether I would rather live a "full" life without tamoxifen than struggle with so many things that make me "less than me."
Catherine, April 2013
Hi Catherine, I've been 9 years cancer-free and I also struggled with tamoxifen side effects. My main complaint was the relentless hot flashes that kicked in full force about a year into taking the drug. I had multiple conversations with my oncologist regarding quality of life and percentages. I agreed to continue taking the drug and also added Ambien to my medicine cabinet. After the second year, I had enough and told my doctor I wanted to stop. It turned out that a new test was done on my blood work and it was determined that I wasn't metabolizing the drug. My luck! Regardless, I think it warrants a very thorough discussion with your doctors.
I just found a lump on my breast. I'm looking for information on free mammograms.
Pam, April 2013
Dear Pam, We hope that all is well with you. Here is some information that might be helpful in finding free or low-cost mammograms.
The National Breast Cancer Foundation provides free mammograms to underserved women across the country by partnering with certain medical centers. Please view the website at www.nationalbreastcancer.org/national-mammography-program to see if there is a medical center near you that partners with this organization.
You can also search by state for mammograms for low-income, uninsured and underinsured women across the United States using the Centers for Disease Control and Prevention website at www.cdc.gov/cancer/nbccedp/screenings.htm
I hope this information is helpful.
Peer Support Team
Hi! I just found out yesterday I have breast cancer. I need to tell my children first before I can talk to anyone about this. I don't want them to see the fear in my eyes. I have to be strong. My girls are 20 and 23, but we are close as no other. Should I lie and tell them it's a cyst that they have to remove and hope they don't find out until everything is over? I had a lot of family members that died between ages 45 and 50, and they were all strong people. I don't feel strong like they were and I want to know how to tell them.
Me, April 2013
Yes, it is always difficult to tell your children that you are ill. It sounds like you have two wonderful daughters, who will be supportive during your illness. Excellent methods and procedures exist today in treating breast cancer.
In 2004, I was diagnosed with breast cancer and needed to tell my 3 children, 2 sons and 1 daughter. First, I talked with my doctor. Second, I read several articles by the American Cancer Society, and third, I read sections of "Dr. Susan Love's Breast Book." Then, I spoke with confidence to each child individually, and told them I had breast cancer. It is OK to tell your daughters your fears and concerns. They might surprise you and help you in more ways than you might imagine. My best to you and your daughters during this difficult time.
My daughter needs a support group for breast cancer in Las Vegas, Nev. Is lumpectomy surgery always successful for a lump? She is 53.
Katie, March 2013
First of all, I am very sorry that your daughter and your family have to go through this. It is a very stressful and confusing time and I wish you all the best.
Regarding your question about the effectiveness of lumpectomy, her doctor would be the best person to consult regarding these medical questions. In a lumpectomy, the surgeon tries to conserve as much of the breast as possible while still removing the cancerous cells. To determine whether a re-excision is needed, the pathologist will look at the tumor that was removed and inspect the margins of the tissue. If they are all clear or cancer-free, then it is assumed that the cancerous tissues have been removed. However, it is possible that further surgery and other treatments may be advised by the doctor. Your daughter should ask her surgeon about this procedure and her other options.
I live in North East, Portland and I am looking for a support group for breast cancer.
Christy, March 2013
Dear Christy, Please take a look at the Susan G. Komen for the Cure website for Portland support groups. We hope this information is helpful.
Peer Support Team
My mom has had cervical cancer and three pre-cancer cysts removed. She just found out she now has breast cancer and has decided, after two months of thinking, that she does not want to treat it for various reasons. She has been having really bad unexplained headaches that are not anything like her blood pressure headaches and they have been really bad and really consistent. What are the chances of her having brain cancer? She is 39. I'm 21 and the oldest child of three biological and four adopted children. I think I'm more scared of the results than she is. I don't know where to turn to find answers to my questions. Can anyone help me?
Christy, February 2013
Dear Christy, First of all, we are sorry that you have to go through this. It is a very challenging time. It is highly recommended that you have your mother speak with a medical provider about these headaches and other symptoms that she is having. It may be helpful for you to go with your mother on these appointments to have a better understanding of what she is going through. Also, since it is a difficult time, surrounding yourself with support is very important. The Cancer Support Community offers a cancer support helpline for family members of cancer patients. You can reach them at (888) 793-9355. All the best to you and your mother.
Peer Support Team
I must get help for my daughter who is 41 years old and has been diagnosed with breast cancer. She has two more chemotherapy treatments and then must face a double mastectomy. She has been fighting cancer since she was 17. She has two children, 7 and 9, and is going through a divorce and needs to talk to someone her age who has breast cancer. I can't seem to help her. She met with a support group that had people that were older and retired. She is trying to get back to work.
Diane, February 2013
Dear Diane, First of all, I would like to say that I am so sorry that your daughter has to go through this. It is really unfair that she has to deal with so many challenges. Personally, I have found that having the right support group was a very important part of my healing. It was hard to find at first, since the breast cancer support group at my local hospital had women at very different stages of life, dealing with very distinct challenges and concerns. However, I finally found the right support groups for me. Below are a few of the groups that I had joined. They were invaluable to me and I hope that they will be helpful to your daughter as well.
YSC, or the Young Survival Coalition , is a large organization dedicated specifically to young women with cancer. They have a forum, local groups including one in the Bay Area, and a yearly conference. This year, the conference is on Feb. 22-24 in Seattle. It is an amazing event, bringing together young breast cancer survivors, patients, family and health care workers from all over the US. I highly recommend getting involved with them.
Another amazing resource is the Image Reborn Foundation, which organizes free weekend retreats for young breast cancer survivors. I participated and it was an incredible experience. We were a small group of a little over 10 women, spending the weekend in a beautiful house in Utah. We had a chef cooking healthy food for us, many experts coming to talk, and even got a massage and manicure. However, the most amazing part was getting to know and spending time with all these amazing women.
Another great website is I'm Too Young for This.
Although they are hard to find at first, there are a few groups dedicated to young adults dealing with breast cancer. I hope your daughter finds one that is useful for her. I, of course, would be happy to talk to your daughter or you over the phone!
May 2013 be a year of healing, health, and happy new beginnings. I wish you all the very best.
I've been recently diagnosed with Stage 1, Triple Negative Breast Cancer and treatments are radiation and chemotherapy. My biggest fear is the first day of chemotherapy. How do you prepare your mind and body? I'm trying to be strong but fear I will breakdown that day!
Little Bee, January 2013
Dear Little Bee, I understand your concerns and anxiety about starting chemo. I felt the same way. Chemotherapy was very manageable for me as I was well prepared by my oncologist and the infusion nurses before I began.
Hopefully, you have already or will meet with your oncologist and the infusion team before your first day of chemo so that they can show you where you will be and explain the procedures to you. In my case, I was given a prescription for some anti-nausea medications to start before I came in for my first dose of chemo. You might want to talk with your oncologist about any meds that might be helpful to have started before your first dose or to take when you arrive for your first chemo. Having as much information about what to expect with your particular chemo drugs and the procedures that you will have will help reduce your anxieties and make the experience a better one for you. Best of luck to you.
Does anyone know how long it takes for hair to grow back?
Bela, January 2013
Dear Bela, I lost all my hair from chemotherapy. It started growing back a couple of months after I completed the chemotherapy drugs that caused hair loss while I was continuing to get the 3rd chemo drug that did not cause hair loss. From what I have read, hair grows about a half inch per month. For me, it took about 3 months to have enough hair to be seen. Good luck with your hair growth.
I found a lump in 2011 and have completed a partial mastectomy, chemotherapy and radiation for the left breast which has invasive metastasizing cancer and 1 of 2 positive nodes. Either a left re-excision or mastectomy was further recommended. I have been very healthy throughout and have been given a very positive prognosis. But, during a recent second opinion, my oncologists emphasized the ductal cancer and did not address with me the implications of lobular cancer, which was also in my pathology. An esteemed oncologist who provides consultations for breast cancer patients stressed the importance and risks of lobular cancer. I have also just read that lobular cancer is not as "benign" as previously thought. Consequently, I have requested a full left mastectomy and a right mastectomy, since "monitoring" lobular cancer via mammograms is not very reliable, I learned. I feel I'd rather not deal with the uncertainty of a right breast cancer while I strive to maintain health in the rest of my body. Given that lobular cancer "travels" in a manner that is difficult to detect, is the remaining breast tissue of my chest still at risk? Will removal of my breasts truly increase my chances of survival?
CP, January 2013
Hello CP. Let me share with you my experience with lobular cancer. My diagnosis of suggested breast cancer came from my regular physician during my annual exam. As you indicated, nothing showed up on the mammogram but other procedures showed that it was lobular invasive cancer. The surgeon suggested a lumpectomy, but did indicate the other breast was apt to become cancerous. My oncologist suggested I read sections of "Dr. Susan Love's Breast Book" prior to my visit. I also met with a psychiatrist in the UCSF Breast Care Center prior to my meeting with my oncologist. The oncologist told me all the recent research in this area and that actually the statistics no longer supported the breast cancer appearing in the other breast. I chose a lumpectomy, radiation, and hormone therapy.
It's great to hear about your positive prognosis. I am an eight-year survivor of lobular cancer and chose a lumpectomy procedure. It's recommended to discuss a second opinion with your oncologist. Ask your oncologist all the questions on your mind. Then consider a third opinion if you still have questions. Once you collect this information, you can make a decision. I wish you the best in your decision.
My sister was diagnosed with breast cancer in September of 2012. She is now on her 5th treatment. The medicine she is on now is called Taxol and it is giving her quite a lot of pain. She says that it hurts the worst across the top of her shoulder blades. She says that it feels like pins sticking her from the inside. We read the side effects for Taxol, which indicated that bone and muscular aches are some side effects. Has anyone else felt this sort of pain and what did they do to reduce the pain?
Deneen, January 2013
Hi Deneen. How great that you are able to support your sister through this. My sister was with me as well and made so much of a difference! Regarding the Taxol, I experienced neuropathy (could be the pins and needles) and bone pain. I'm not sure if that is what your sister is experiencing. The doctor stated that the bone pain may have actually been due to the Neulasta, which is used for those of us on "dose dense" regimens. She might consult with her doctor or team to see if something can be done to minimize the symptoms. I was prescribed medication to help me cope with the pain. They also offered to change the regimen so I didn't have to take the Neulasta. It's always best to speak to your medical team regarding symptoms and symptom relief. Everyone is so unique, even with "common" symptoms. Best wishes for a speedy recovery!
Why do doctors schedule you for chemotherapy and then because the labs are so low, they cancel the chemotherapy. Are they holding back bad news?
Lori, January 2013
Dear Lori, Many of us have had to postpone a treatment due to low numbers. It is my understanding that when our numbers are too low, they haven't recovered sufficiently from the last treatment. Postponing allows us to tolerate the next treatment better.
Chemotherapy can be very unsettling, to say the least. This is a great question for your doctor. Sometimes, they are not aware of what we worry about. Sometimes they don't realize that we don't understand until we ask. It has been my experience that doctors want to let us know as much as we want to know. I would suggest you talk to your doctor or someone from your team about your concerns. Information can often reduce our anxiety. I hope this was helpful. Take care.
I've completed 4 rounds of chemotherapy. I have 2 more to go and then I will undergo radiation. The doctors caught my cancer early. I've been very blessed. My concern is radiation and from what I understand, it can cause cancer in some patients years down the road after you've been considered cancer-free. I really don't want to go through all this again. I'm still learning about all this.
Donnie, January 2013
It's possible that radiation can cause cancer. From what I have learned, second cancers are a rare event and much is known now about the specific risks of the type, amount and location of radiation therapy. Also, radiation therapy has been used for over 60 years and is often a life-saving therapy. Like you, I had chemotherapy and radiation therapy and I am now almost 7 years from diagnosis.
It's recommended to ask questions to the radiation oncology staff about the risks of second cancers for you, in particular. This is likely to be more helpful to you than some of the information that we can find ourselves.
I had lymph nodes removed during breast cancer surgery. It has been two weeks and I still have pain from the nerves that were cut. How long before I start feeling better?
Lanora, December 2012
Happy New Year, Lenora. Everyone is different in terms of their recovery from lymph node removal. I would let your physician know that you still have pain and if there is anything you could do to alleviate it. In my personal experience, when I had some pain, I received some wonderful massage to help ease it.
Kathy, peer support volunteer
My sister just completed chemotherapy and radiation and is on tamoxifen and anti-depression meds. She is a total wreck. She cries all day and says she doesn't care about anything. She doesn't want to be a burden on all of us anymore. She has been on anti-depressants for about 3 weeks. Do you think they will help her through this? I'm at a loss of what to do to help her see that she will be okay.
Yvette, December 2012
Dear Yvette, I am sorry your sister is going through this! First of all, if you are worried about her safety in any way, it is important to contact 911 or her physician. It is possible that anti-depressants take a while before their effects are noticeable. Her doctor may need to adjust the dosage or medication type, so she should discuss this with her medical provider.
It seems that your sister is done with active treatment. I have found this period to be the hardest, emotionally, as this is the point where you start waiting to see whether the cancer will return or not. I surprised myself at the end of radiation because instead of feeling relieved, I became filled with dread. I began having serious doubts that I made the right decision about my treatment and feared that the cancer would come back. Every ache or cough kept me awake at night. However with time, my life returned to normal. I am no longer just waiting for my next scan but instead I am planning my life just as I did before my diagnosis. It may help to try to discuss those fears with your sister and explain that it is a completely normal phase to go through.
Your sister may also find it useful to join a support group. There are now many options available, both online and in her area, where she could meet or talk with other women going through the same situation she is. For me, even more than finding people to discuss my problems with, I found a lot of comfort helping others.
I know that sometimes when people are depressed, it is hard to get them to do things, but you may want to encourage her to walk in nature, to take a yoga class or perhaps to get a massage or pedicure even if she doesn't feel like it at the moment. In addition to getting some exercise, I found that feeding my body nourishing foods would help me — and my soul — feel better as well. And there is always laughter. Try to watch some funny movies with her, while munching on fruits or go out to a comedy club.
Some hospitals offer alternative therapies for cancer patients. I have found those extremely helpful. For example, the Osher Center for Integrative Medicine at UCSF offers many classes such as healing through dance, Yogacare, promoting health with Qi Gong and more for free to anyone living with cancer. Ask her if she would consider taking part in those types of classes.
Finally, I found it very useful to combat those feelings of helplessness, to regain some sense of control. Reading inspirational books made me do just that.
To help with her feelings of burdening you and other people close to her, I will simply quote the following three passages which can be used to help explain to her that you are the one who's the most grateful for being able to help her when she needs it:
"Giving is the highest expression of potency. In the very act of giving, I experience my strength, my wealth, my power. This experience of heightened vitality and potency fills me with joy. I experience myself as overflowing, spending, alive, hence, joyous. Giving is more joyous than receiving, not because it is a deprivation, but because in the act of giving lies the expression of my aliveness."
— Erich Fromm
"For it is in giving that we receive."
— St. Francis of Assisi
"No one is useless in this world who lightens the burdens of another."
— Charles Dickens
In a nutshell:
1. It is a very scary and overwhelming time for your sister and she needs to know that it is normal to feel that way.
2. Take care of the body by exercising, walking, laughing, eating nourishing food and getting pampered.
3. Find a support group and attend local classes.
Wishing you and your family a very happy and healthy New Year!
I recently had a mastectomy and they took the last tumor out two days ago. I had angiosarcoma cancer from radiation treatments from my cancer five years ago. They took half of my breast in August. Two months later it was back and they performed a mastectomy. They say everything is done. Should I insist on some kind of follow-up treatment? I go to my cancer doctor this coming week. Thank you.
Jerry, December 2012
It must be difficult having to contend with cancer for five years now and hopefully you will be able to focus on more positive things in the future. I underwent four lumpectomies within a year and each time cancer cells were found at the margins. I did what I could to try and save my breast but my breast was pretty mutilated. I made the choice to have a mastectomy with reconstructive surgery. I was told by my doctor that the mastectomy would remove all the cancer. It has been 12 years now and I have had no problems. I also had no additional treatment -- radiation, chemo or preventive drugs. It took me a while to believe that I was cancer free but I feel more confident about my future.
I recommend that you discuss in detail with your doctor the lab results from the biopsy done during your mastectomy. You can then make your decision based on the information provided to you. Make sure to ask questions until you understand the diagnosis. You will probably be closely followed to make sure you are in the clear.
I wish you well and hope that you receive good news from your doctor.
I was recently diagnosed with triple negative and BRCA1/2 negative breast cancer. I am 34 years old. I would like to find a support group or women who are going through or have been through similar diagnosis as well as a counselor who specializes in seeing cancer patients. I am not sure where to look for references.
Shana, November 2012
We have online and phone peer support volunteers who can provide insight regarding their experiences with triple-negative breast cancer. Please feel free to submit a question online for volunteers about their experience. You can also contact the Ida and Joseph Friend Cancer Resource Center, which offers information and resources regarding support services available through UCSF, or contact the peer support program coordinator at (415) 885-7801 to connect with a volunteer by phone.
Peer Support Team
I had a lumpectomy and radiation. Now, my doctor put me on tamoxifen. The hot flashes and night sweats are unbearable. Is there something I can do? I cannot do this for five years. Thank you.
Virginia, November 2012
Dear Virginia, The good news I can give you about my personal experience is that although my first year with tamoxifen was horrible, most of my symptoms went away the second year. I am now starting my fifth year and hardly notice any side effects. Now, everyone is different, so you may or may not have a similar experience.
One thing I found useful during that first year, was to take the tamoxifen first thing in the morning instead of before going to bed. This seemed to help me sleep better at night. I also tried splitting the dose and taking half of it in the morning and the other half at night for a few months. You could ask your physician about that if you think it is worth a shot.
I also took the tamoxifen metabolizer test, CYP2D6. I took part in a clinical trial 3 years ago that measured how well an individual metabolized tamoxifen. You may want to ask your oncologist about this test and see how relevant it is to you.
Otherwise, my advice to you is to hang in there. Do ask your physician about ways to decrease these side effects, whether it is by conventional medicine or with alternative therapies. I wish you all the very best.
My wife got her first chemo last week. She has mouth sores and burning urination. What can she do?
Phil, November 2012
Mouth sores are not uncommon with chemotherapy since the lining of the mouth and other mucus membranes are cells that are constantly replacing themselves and therefore, killed by the chemo drugs. The lining of the urethra which is the tube that carries urine from the bladder to the outside is also a mucus membrane. Drinking lots of fluids and eating soft foods that will not irritate the mouth may help. However, since I am not able to provide any medical advice, it is best to let her health care provider know about these symptoms before her next chemo or earlier if they get worse and she is unable to eat and urinate.
I have to decide either a lumpectomy or mastectomy. What do I do?
JR, November 2012
There are no easy ways to come to a decision, especially one so crucial that involves your health, body, and body image. I remember thinking to myself, “but I’m not a doctor. How would I be qualified to decide on my own treatment?"
Making this decision is very personal and it will depend on what risks, side effects and consequences you are willing to live with. If you choose a lumpectomy, there are the obvious advantages of a less invasive surgery and a quicker recovery. However, there is the possibility of having to do more imaging tests.
There are many more points you will need to take into account when making your final decision. My advice is to ask your doctor for a list of advantages and disadvantages regarding both treatments. Take your time to think this through. Read, meet with the plastic surgeon, go to a breast cancer support group and survey the other women on what they chose and how they felt about it. Also, you may want to seek a second opinion.
I did all of the above when I was given this same choice. Also, in order to give myself more time and data to make my final decision, I decided — with the approval of my surgeon — to first undergo a lumpectomy. Later, after my genetic tests came back, I made a final decision as to whether I would do a mastectomy or not.
The important thing is to be at peace with your decision and to try not to second guess yourself later on. I know. This is hard. If there was a clear medical reason to go one way or the other, your doctor would let you know. Otherwise, it’s your personal decision. All the very best to you.
My adult children feel I'm having emotional problems since my mastectomy. I can't stop crying and I feel overwhelmed.
Julie, October 2012
Dear Julie, It sounds like your family is worried about you. It sounds like you might be too. You have been through a lot. It took me a long time to realize that my family was overwhelmed as well. They just wanted me to be OK. And I wasn't. I found a support group where I could talk about what was overwhelming me. It was a place I could laugh, cry and talk about any of my feelings. In fact, many were experiencing the same things. It was very normalizing. It helped me cope with my million fears, my anger, my sadness and my disappointment. It allowed me to explore what I had control of, and what I didn't. It helped me see how I wanted to move forward.
I encourage you to seek out a group support or an individual support. Some people utilize both. Your life just changed 180 degrees. That's pretty overwhelming. It's normal to be overwhelmed and emotional. It is important to address those feelings so that it doesn't keep you down. It can get better again. I have found that cancer affected not only my body, but mind and spirit. It all needs time and often support to heal. Best to you.
Hi. I have recently had a breast biopsy (the needle extraction of fluid from a lesion found behind my nipple area). This was found in an ultrasound test done after 2 mammograms which showed round, cyst-type lumps in my breast. I have received the results saying that my tests are "positive" but that there was no discharge or tenderness. I am scared. I have been told that I am seeing a surgeon next Wednesday morning for instructions of what treatment I will need. I have no idea of what to ask that is important. How do I proceed?
Marsha, October 2012
Dear Marsha, I am sorry that you are going through this. I know too well how scary and overwhelming it can be. The beginning is one of the most challenging parts as there is so much unknown and waiting involved. I have compiled a list of questions you may want to ask the surgeon during the first few appointments. My first piece of advice for you is to realize that your surgeon or oncologist does not have the whole picture yet. It would be best to not get too scared of the plan they propose as this can very well change as they collect more information along the way. For example, on my first appointment with the surgeon, he predicted I would have to do many more treatments than I ended up doing. My second piece of advice is to focus on asking the surgeon questions about surgery rather than chemotherapy, radiation, medication, etc. Those questions are better directed to the oncologist and radiation oncologist. My third and most important recommendation is to have someone that you trust come to the appointment with you, so that you can focus on asking the questions while your companion takes notes.
Here are some questions that you may want to ask for your first appointment. I am not a medical provider but I found asking these questions helpful:
1. What is the pathology of my cancer (i.e., is it estrogen negative or positive, progesterone negative or positive, HER2 negative or positive, etc.)? Ask to have a copy of the report.
2. What stage or grade is the cancer?
3. Is it invasive or in-situ?
4. Where is the tumor believed to be originating from?
5. Should I undergo an MRI before surgery or an ultrasound of the lymph nodes?
6. Am I a candidate for chemotherapy before surgery?
7. Am I a candidate for a lumpectomy or a mastectomy? What are the advantages and disadvantages of each kind of surgery?
8. For the surgery, ask what type of anesthetic will be used, how long is the surgery, how long is the recovery time, how long do I need to stay at the hospital, what are my restrictions and can I get breast reconstruction at the same time.
I hope this information helps. Good luck on the appointments.
I have been diagnosed with a cluster of calcifications in the milk ducts. The doctor wants to take out the cluster as there is a 20% chance it's cancerous. Do I have any other options? I'm skeptical as I had a lumpectomy previously that turned out to be negative.
Linda, October 2012
I think that it is very reasonable to request a second opinion. If you are not being seen at a breast cancer center, you might want to see a surgeon at a center for your second opinion. It is always useful to have the most information you can to help you make the best decision.
I've had dry mouth for 2 months. I finished chemo and I have ulcers in my throat and the saliva is driving me nuts. Has anyone been through this? Any advice?
Sherry, October 2012
Hi, Sherry. I experienced dry mouth, but not ulcers, so I don't have great advice or experience with that. In regards to dry mouth, I drank a lot of ginger ale through a straw to limit the carbonation factor. I was also addicted to lemon/ginger tea. Common theme - ginger. It's suppose to have settling effects. Hope this helps.
What can I do to relieve fingernail pain due to neuropathy from my last chemo treatment? Ouch.....it hurts.
Karen, October 2012
I remember after my last treatment, my nails became loose and that did hurt! I consulted with my doctor who advised me to keep my nails short so that they didn't get caught on anything. They eventually grew out without losing them. I would definitely consult with your oncologist and make sure there are no infections, etc. If it is due to the neuropathy, your doctor might be able to advise you about what to do about the pain. It is always best to talk with your doctor about pain and discomfort as the cause may be due to something that needs medical attention. I hope relief comes soon. We use our hands for so much!
Take good care.
Is it common to get an infection in the breast after radiation? What is the treatment?
Liz, October 2012
Dear Liz, I do not believe that getting an infection after radiation is very common. However, your doctor will be better able to answer this question for you as well as talk about possible treatments if infection of the breast occurs. Personally, I had no major issues during radiation treatment (apart from fatigue and redness). However, after treatment ended, my skin started burning and peeling. Fortunately, it healed quickly. A healthy diet with lots of fruits and vegetables, rest, relaxation and general hygiene, I believe, all helped me recover quickly. Of course, these all depend on many factors, especially for any given individual with specific risks to infections. Again, I encourage you to consult with your physician and/or healthcare professional(s). They may be able to recommend a cream or other treatment.
I wish you all the best and I'm sorry you even have to consider these issues.
I just found a lump on my breast. It's sore. I need to go to the hospital for further tests. Should I tell my friend?
Sandy, October 2012
Dear Sandy, most people feel better with support from friends and family when dealing with stressful situations. If this is true for you and you have support, I recommend that you share your health situation. For me, I found it very helpful to talk with others. If you have no support available, please ask for support from your health care providers and hospital.
You may also be interested in talking with a peer support volunteer over the phone. If you're interested, please contact the UCSF peer support coordinator at (415) 885-7801 to connect you with a volunteer who has had a similar cancer experience.
I am 71 years old and have discovered I have breast cancer. I talked to the surgeon yesterday and she said I have choices. I can have a part of my breast removed and then have radiation and chemo or I can have the whole breast removed and not have chemo. I really don't want chemo. I am waiting to get approval. The cancer was discovered in February this year and I have been waiting for one thing or another ever since. It sure is a slow process. The surgeon said it was stage one. I just don't know what I should do. My boobs are of no use to me anymore and don't have a problem getting rid of both of them. What do you think?
Bobbie, October 2012
I know it seems like everything takes forever. Actually, when I was diagnosed with breast cancer every medical professional suggested I read parts of "Dr. Susan Love's Breast Book" to help me make a decision. My daughter got a copy right away, in case she ever gets breast cancer. You are the only one who can decide what you want to do. Your choice is always the right one for the way you want to live.
I will have two biopsies tomorrow at Carol Ann Read Breast Health Center. There is a high probability of cancer diagnosis. My lymph nodes are big (left side) and I can feel something in my left breast. I want to find a good medical center and oncologist. Can anyone help me?
Flavia, September 2012
Hi Flavia. To give you a little background on myself, I was diagnosed with DCIS in 1999 and had several lumpectomies followed by a mastectomy with reconstructive surgery in the year 2000. I have had no problems since that time.
My choice of UCSF Breast Care came easy to me. I am from San Francisco and remember my grandmother having both breast and colon cancer and being treated by UCSF. Her treatments were successful and she lived well into her nineties. In addition, the doctors at UCSF saved my daughter's life. At the age of 12, she had a platelet count of zero which is unheard of. Her doctors brought her back to health.
When I got word of my DCIS, my internist referred me to Dr. Laura Esserman and I was fortunate that she was able to take me as a patient. Not only did I get the best medical treatment, I was treated with respect and compassion by the doctors and nurses. I knew that I was in good hands.
UCSF offers cutting edge treatment of all cancers and is one of the leading hospitals in the country in not only health care but for its ongoing research. I have numerous friends that appreciate the care they have received from UCSF. I know I could not have made a better choice.
I wish you well and my thoughts are with you.
Is there a place in Edmonton, Alberta, where men can go to learn more about breast cancer and how to give the love and support their spouses need.
Toot, September 2012
The Cross Cancer Institute in Alberta, Canada provides cancer center services for patients and family members. More information about the institute is available online or you can contact the institute at (780) 432-8456. All the best.
Peer Support Team
My daughter just had a double mastectomy and I have no information on ways to help her. Right now, she is in a lot of pain and is getting no sleep. What do I do or not do to help her?
Madonna, September 2012
Hello Madonna. This sounds like a very difficult time for your daughter and your family. You should just love her and tell her you are there to support her in whatever way she needs you to support. Treat her as you would have before she became ill. During my recovery I discovered that meditation helped me when in pain, worried or scared. My daughter actually participated with me at times. If you live near the area, the Ida and Joseph Friend Cancer Resource Center at UCSF offers meditation classes and tools. Another thing I turned to was exercise with other cancer patients. It really helps to see people with the same problems. However, your daughter has to make the choices of how she spends her recovery. It is good to always be there to support her choices.
For more information on meditation please visit Breast Cancer Self-Care and Recovery — Meditation and Meditation and Guided Imagery. For more information on exercise, see Breast Cancer Self-Care and Recovery — Exercise Program and the cancer resource center website.
Is there a breast cancer support group that meets at UCSF? I'd like to join one.
Raina, August 2012
Raina, currently, there is no breast cancer support group, although one may be offered in the future. There is, however, a general support group for those with all types of cancer that meets Wednesdays from 5:20 to 6:50 p.m. For more information, please contact facilitator Patty Moran at (415) 353-9745.
Peer Support Team
Are there any organizations that help pay co-pays or help pay for treatment of breast cancer? My insurance doesn't cover everything and my bills are piling and there is nothing left to live on. I can't find help anywhere or I am told I make too much. I can barely make it now.
Judy, August 2012
Judy, there are a number of organizations that offer assistance with copays. The Brenda Mehling Cancer Fund also provides some assistance for other expenses for breast cancer patients. Please review the websites below for information about assistance and eligibility requirements:
- Brenda Mehling Cancer Fund — www.bmcf.net. (The fund assists patients age 18 to 40.)
- Cancer Copay Relief — www.cancercopayrelief.org
- Chronic Disease Fund — cdfund.org/Copay-Assistance.aspx
- HealthWell Foundation — healthwellfoundation.org/pharmacies/get-reimbursed
- Patient Advocate Foundation — www.copays.org
Hope this information is helpful.
Peer Support Team
My wife was recently diagnosed with breast cancer. The surgeon recommended mastectomy. I saw that UCSF recently acquired a BSD2000 hypothermia system. Can that be used without chemo or radiation to reduce breast cancer tumors? Isn't that what they use these systems for in Europe? We live in upstate NY.
John, August 2012
UCSF Medical Center has microwave devices such as the BDS500, and ultrasound devices, such as the Labthermics Sonotherm, for delivering hyperthermia to superficial tumors, located within 6 to 8 cm of the skin. The BSD500 also can be used to deliver hyperthermia through what’s called a high-dose-rate brachytherapy implant to internal areas such as the cervix and prostate. These hyperthermia systems, both microwave and ultrasound, are used to treat breast, chest wall, head and neck, pelvis and prostate cancers as well as melanoma. UCSF recently purchased a BSD2000 for heating deep tumors in the pelvis and abdomen, with installation planned in 2013. Hyperthermia at UCSF is delivered in conjunction with radiation therapy or chemotherapy. For more information, please contact UCSF Radiation Oncology at Mount Zion.
Peer Support Team
How long does it take for invasive ductal carcinoma to spread?
Cool, August 2012
It is difficult to say how quickly invasive ductal carcinoma will spread as it depends on each person's condition and biological makeup. There are many factors involved in how cancer grows and spreads. We recommend that you seek advice from your doctor who can give you more information about your specific medical condition.
Peer Support Team
Just finished 25 regular radiation treatments and 8 boosts, which I was told would be directly on the scar. My burn from the boost is not on the scar but off to the right of it. Is that normal? Shouldn't it be directly on the scar?
Cookie, August 2012
Cookie, I can share my experience, though everyone's experience is unique. For me, radiation burns occurred in areas where there was rubbing or pressure from bras or clothing, or when skin rubbed together. My experience may be different from yours. I suggest that you talk to your doctor to obtain a better understanding of your situation regarding radiation and burning.
I have the BRCA1 mutation, making me genetically predisposed to breast cancer with 85% likelihood. Based on family history, it is anticipated that if I get breast cancer, it will be unresponsive to chemo and radiation. I will probably get a prophylactic double mastectomy in the next few months.
Does anyone know of support groups for people with a BRCA mutation or for those considering prophylactic mastectomies? I'd love to talk to people in a similar situation.
Samantha, July 2012
Samantha, you may benefit from FORCE: Facing our Risk of Cancer Empowered at www.facingourrisk.org. There, you can find local chapters closest to your location. UCSF Medical Center also has a Cancer Risk Program for those that carry the BRCA mutation. This program may offer some helpful information. Also, the peer support program at UCSF has peer support volunteers who carry the BRCA mutation and who have developed breast cancer. If you are interested in speaking with someone who carries the gene mutation and has developed cancer, please contact the peer support program coordinator at (415) 885-7801.
Peer Support Team
I was diagnosed with breast cancer. I've had a lumpectomy. Now, I will have surgery to have the lymph nodes checked. The doctor says I'll need radiation therapy. If the lymph nodes are positive, then I'll need chemo. I'm just waiting to see what will happen . Can someone talk to me about all this?
Porkchops, July 2012
Your doctor will need more information from the lymph node biopsy in order to know what treatments you will need. As you seem to understand, if the breast cancer has spread to your regional lymph nodes, your doctor will suggest a treatment plan for you that will address this situation. Also, your health care team will get or has information on your tumor markers that will help design your treatment plan. I am happy to further our conversation over the phone, if you would like. Just call the peer support program coordinator at (415) 885-7801.
What do you do when you are sick and tired of just being sick, and the body and mind no longer function as one?
Eve, July 2012
Dear Eve, I am so sorry that you have to go through this. I don't know if I have a solution but I can tell you how I went about taking back control of my mind.
The relationship between body and mind could not have become clearer to me on the day I was diagnosed with cancer. That same morning, I had felt just as healthy and happy as ever, but that afternoon, after hearing the doctor's news, I felt as if I had aged 60 years. I was depressed, mad, weak and sick. I knew that I had to somehow take control over my mind or I wouldn't be able to get out of bed ever again. I had young kids at home so this was not an option. Also, what this situation was trying to teach me was that I had to live in the present. The future seemed scary and unknown. But, how was I to manage this when on top of it all, the treatment itself made me sick?
Controlling my thoughts was not an easy feat. I actually often saw this as a full-time job and was lucky to be able to dedicate many hours a day to maintaining a balance in my life. I took advantage of what the hospital had to offer, from art therapy to group support to meditation and visualization. I found that spending time in nature, particularly in front of a body of water, would help calm me down. I exercised when I could. Again, a walk in nature was the most effective for me. On TV, I only saw comedies. Even gossip magazines were too depressing for me. I also found it useful to read books on cancer, concerning motivating stories and topics such as diet and lifestyle. I allowed myself to feel sad, angry and scared sometimes. However, I could not live my life under the dictatorship of fear or anger. I gave myself enough time to cry it out and then I would try to regain a positive attitude and enjoy life as best as I could.
So try to find what makes you happy and what calms you the most. Try to find a good support group and eat healthy. I send you warm hugs and I hope you feel much better soon.
I have been diagnosed with Stage 1 Breast Cancer that is driven by the HER2 positive protein 3+. How dangerous is chemo partnered with Herceptin or Herceptin alone to the heart and lungs? I'm very apprehensive about following this course of treatment.
Squirrelly, June 2012
Currently, we don't have a volunteer online who has had experience with Herceptin but we could connect you with a volunteer in our phone program if you call the coordinator of the Peer Support Program at (415) 885.7801. Peer support volunteers offer emotional and practical advice, not medical advice, and can share their experiences with you. We look forward to hearing from you. Thank you.
Peer Support Team
What are some resources for my Mom? She has breast cancer and needs help with medical and household bills?
Max, June 2012
Max, we recommend that you first review the questions and answers already posted since several of them address financial assistance. In addition to the resources in previous answers, a nonprofit organization, called Cancer Care, provides some financial assistance. Please call (800) 813-4673 or visit www.cancercare.org/financial.
Another organization, called the HealthWell Foundation, provides co-payment and premium payment assistance to eligible individuals. To apply, please contact (800) 675-8416 or visit www.healthwellfoundation.org.
We hope this helps.
Peer Support Team
I'm 38 years old, diagnosed with breast cancer on May 16. I had a mastectomy on May 23. I will go to the oncologist on June 15. I feel like I'm on a roller coaster ride. When will this roller coaster ride stop?
Susan, June 2012
Dear Susan, I am sorry you are going through this. I hope you are recovering well from the operation. The short answer to your question is that the ride keeps going for quite a while, but the drops get less and less steep and the periods where the roller coaster feels just like a regular train ride increase. But unfortunately, there are surprises and scares along the way. I am now nearly 4 years past diagnosis and most of the time I feel that life is back to normal and I don't even think about cancer (it was hard to believe I will ever reach this place 3 years ago). But the ride is long and tricky, especially when you are diagnosed so young. I can tell you that for me having to deal with menopause at 31, not being able to have more children, and seeing changes in physical appearance are still hard for me to deal with sometimes.
To me it feels like this ride has 4 distinct stages:
The first stage, in which you are in, is really hard. I had to come up with a treatment plan and then go through it. Decisions, side effects, waiting and more waiting for results or procedures.
Then comes the second stage. This time, I am done with active treatment. But now comes a different type of worry and preoccupation: Did I make the right decision? What if the cancer comes back? I also used to get really scared every time I had a weird cough or back pain.
In the third stage, I only felt being on the roller coaster every 6 months when I had to have a scan. I was anxious before and after the test, until I got the results.
And I may just be at the fourth stage now, where I don't even become anxious waiting for a scan or a blood test result. The only thing that bothers me now is menopause and wanting, but not being able to get pregnant.
Cancer sucks and I don't wish it on anybody. But in some way, it taught me invaluable lessons for which I am grateful for. I am not scared of the things I used to be scared of. I had the courage to go after the career I always wanted. I have so much more patience and in general I don't sweat the small stuff as much. I wish you all the best and send lots of healing thoughts your way. I wish they find a cure fast! Feel free to ask me any question. Warm hugs,
I had early breast cancer but I still lost my breast. WHY?
Diane, June 2012
Diane-- I know it may not seem fair, but I think it is a worthwhile sacrifice for me if it means I'm here today living my life. I was also diagnosed with early stage cancer, actually zero stage cancer and lost my breast. I thought that was an extreme measure and wondered why. My diagnosis was given to me in June. I had my mastectomy in August. The pathology on my breast showed that two small tumors had developed in little over two months. Knowing that, I never questioned the prescribed treatment again. I've been cancer-free for 8 years and I would willingly give up my breast again. I hope this helps.
How do you get financial help because I'm so stressed out with the treatments and my husband has to take off from work to help me. I have no one to help with the bills and medicine. I do have health insurance but how can I get more help? Does anyone know?
Rosie, June 2012
Rosie, you might benefit by calling the National Comprehensive Cancer Network (NCCN), a non-profit alliance of leading cancer centers that provides services for health care providers and patients. Its services include assisting patients with treatment decisions; locating financial assistance; helping find insurance plans, and providing information to manage fatigue, manage nutrition, track and maintain medical records and paying for treatment. Please call them at (215) 690-0300 or view their website at www.nccn.com.
In addition, Patient Services Inc. (PSI) is a non-profit organization dedicated to subsidizing the high cost of health insurance premiums and pharmacy co-payments. Please view its website at www.uneedpsi.org.
And, the Patient Advocacy Foundation Co-Pay Relief program offers financial and personal services to cancer patients. Please view its website at www.copays.
We hope this information helps.
Peer Support Team
I have breast cancer. I need help with my bills and rent. Who can I turn to for this kind of help?
Aminah, June 2012
Aminah, please take a look at the websites for the Patient Advocacy Foundation at www.patientadvocate.org and the Patient Access Network at www.panfoundation.org), which offer cancer patients financial assistance.
Peer Support Team
After having 2 lumpectomies last October, should I still be experiencing pain that seems to originate from within the breast?
Marcy, June 2012
What a bummer. Not one, but two lumpectomies and both within a month. I had four lumpectomies but all were done within a year's time. I had some minor complications during two of them. I developed a blood clot and a minor infection but I healed without any additional problems. However, at the time, it was painful. Despite my efforts to save my breast, I ended up with a mastectomy. I still have some random pain that comes from that breast, even though there is no breast tissue there. You said that your lumpectomies were both done almost seven months ago and you are still experiencing some pain. I would probably let my doctor know so I could get an understanding of why it is still bothering me. You may find a very simple answer for your pain. Good luck.
If numerous lumps (two) show up suddenly with intermittent soreness, should you be worried?
Elaine, June 2012
The best answer I can give you is that you should always go check out something new and suspicious. Whether it is sore or not, whether it is a single lump or a few, you should not change the fact that your doctor probably wants you to have new lumps checked out. Some women have lumps show up around menstruation and then disappear later in the cycle.
Personally, I have had to go to my oncologist and have new lumps checked out quite a few times. (I have very lumpy breasts.) I know that I sometimes felt silly going so often. But I would rather feel silly and get any potential cancer caught early rather than not. The doctor or oncologist will be able to tell you very quickly whether it is worth to have any kind of imaging done. Anyhow, try not to worry. It's better to be safe than sorry and have those lumps checked out. All the best to you!
I am going for a needle biopsy tomorrow. Will I be put under for this procedure? I am 68 years old.
Kathy, June 2012
I am near your age and can tell you only of my experience. I did have a needle biopsy without any anesthesia. The procedure took just a short period of time and I was on my way.
Is there any way to get physical help around my house without paying a fortune if I am not on Medicaid? I am a widow and live on a very small pension and social security but with the operations I have had and still need, I am very limited at what I can do. I have 13 acres, horses, dogs and cats.
June, May 2012
You might find some information online at www.eldercare.gov for caregiver services. There are some federal services for seniors on the site, under "Resources." Hope this is helpful.
Peer Support Team
My 77-year-old mother just had a lumpectomy and there is still evidence of cancer so she is scheduling a mastectomy. She is considering reconstructive surgery but is concerned about how many other surgeries it will take to have balanced breasts. The surgeon said the implant will not be as large as the other breast so she is considering reduction on one side. Questions are: how difficult is it to recover from 2 breasts having surgery? Would it be better to take more time and do the changes more gradually? If she has the mastectomy and does not have the expander placed at that time, is it more difficult to do later? Thanks for any insight.
Lori, May 2012
When reconstructing a breast using implants, an expander is typically put in to place at the time of the mastectomy in order to reduce the number of overall surgeries required. This expander is then expanded with fluid gradually over time until the tissue is prepared to accommodate the final implant. Surgery on the opposite breast to achieve a balanced aesthetic is very common. Your mother's doctor may be considering doing the reduction on the opposite breast at the time he or she performs the surgery to replace the expander with the permanent implant to minimize the number of surgeries. However, there are most certainly options to do the surgeries separately, depending on how your mother feels about having additional surgeries.
Personally for me, I chose to have surgery on the opposite breast at the time the expander was replaced to minimize the number of times I had to undergo surgery. Recovery time was no greater and the pain and discomfort was actually minimal on the side of the mastectomy and a bit more pronounced on the opposite breast due to the fact that the nerves in that breast were intact in comparison. There were restrictions on lifting heavy objects for about a period of 6 weeks, but all in all, recovery was very manageable.
I would recommend a discussion with your mother's doctor to see what all the options are and whether choosing to wait has any impact on the overall final aesthetic.
Alybee, peer support volunteer
I found out I had breast cancer in 2011. I have been on my job for ten years, and now I'm bankrupt. My disability insurance ran out, and I have no money coming in. I can't work. I live alone and I'm about to lose my house. My car was totaled out the week before I found out I had cancer. My question is how do you pay your bills with nothing coming in? How do I keep going?
Gee, May 2012
I am sorry to hear about your financial problems stemming from your breast cancer diagnosis last year. I hope that you can get some help from the social workers at your cancer treatment center. They may be able to help you in securing housing and other life needs as well as helping you cope with your loses.
I was diagnosed 11/2010 with breast cancer with the anti-HER2, underwent a "partial masectomy, lumpectomy", was on chemo for 6-8 months, 7 weeks of "radiation", and a year of "herceptin" (because of the HER2). I just finished all on 4/24/2012 but unfortunately have to be on a 5-year "hormone" therapy to stop all hormones in my body. I have tried 2 out of 3 and have had terrible side affects on my bones, joints, etc.
My question is, has anyone had these same surgeries/treatments and if so, how did you do to the 5-year plan?
Sandy, May 2012
Sandy, I'm sorry to hear about your challenges with hormone therapy. I had a really rough time with tamoxifen. I was also on a 5-year plan, but made a decision that I would stop at 2.5 years due to the side effects. I was miserable. I had severe hot flashes, wasn't/couldn't sleep without Ambien and was incredibly depressed. My doctor and I had several healthy discussions because he was very against the idea of stopping the drug. At that time, a new test was available which could indicate how and/ or if I was metabolizing the drug. It turns out I was not. So I ended my treatment at two years. That was almost 6 years ago and I'm still cancer free. I get checked regularly and am fairly diligent about monitoring my body and health. I'm not sure if this helps. I hope it does. I wish you well.
I would like to help support a family member who is elderly and going through breast cancer. I am torn apart because she is my mom and she's always been the strong shoulder everyone cries on in the family and we love her dearly.
Yvonne, May 2012
You can give your mother support during her illness. I am sure she will appreciate all that you do.
I am an elderly mother with a diagnosis of cancer in 2004. My children provided support to me by letting me live a near normal life as possible. Of course there are good days and bad days. They encouraged me to make plans for the future and take on new projects. They would listen on bad days and be supportive. Everyone used a positive attitude during this journey of my life.
Ask your mother how you might help. Make your mother feel wanted and needed. Help her enjoy her life and family. Every day is precious, whether you have cancer or not.
Hello, I just found out that I have breast cancer and it's been almost a month now and no one has treated me yet and I am scared and don't know what to do.
Tywanda, May 2012
I know waiting is the scariest part of the whole process. I thought that the instant I was diagnosed, I would be rushed to the ER and the cancer would be removed before I even had time to speak to anyone. I was appalled when they told me that I would have to wait 1 week for the first visit and then about a month for the surgery! Was I supposed to just do nothing while the cancer growing is growing inside me?
However, the cancer took many years to grow and I am sure your doctors just want to do all the necessary tests to decide what is the best plan of action, surgery or chemo first?
To feel better, you could always try to get a second opinion and make sure you are comfortable with your treatment plan. I know getting a diagnosis of cancer is beyond scary and all the waiting for results is really hard, however, you will get through it and will feel normal again. I found it very useful to keep busy during that period. I learned more about healthy cooking and prepared lots of nourishing meals. I learned to do yoga and meditate to calm myself down and I spent many hours walking in nature.
I wish you all the very best. Many hugs and healing thoughts.
I have had a tumour removed from my breast as well as lymph nodes removed from my left side, followed by 6 chemo treatment. I thought that I had recovered from the lymph surgery quite well since I had regained full mobility in my left arm. Now 3 weeks after my third treatment with taxol my left arm and left breast is now sore and hurting right down to my hands (just like when I first had the surgery. There is also a tight banding (squeezing) right along my chest. Is this unusual?
Joy, April 2012
First, it's best to check with your physician or provider regarding these issues. What you are telling me sounds like my experience with "cording", which is not unusual after a lymph node dissection, but this needs to be diagnosed properly by a physician. My physician referred me to occupational or physical therapy to treat it. An OT or PT (with lymphatic training) broke them up for me, as well as showed me how to minimize them in the future with specific exercises. I first experienced it during radiation. In my experience with cording, treatment reduced them within a couple of sessions and they were gone within 6 weeks. Again, check with your physician for a diagnosis and referral. In general, speaking to a trained lymphedema therapist before you have too many issues can be very helpful. It helped me to hear the "do's and don'ts," get fitted for a compression sleeve, how to measure my arm on a regular basis, and how to do manual massage.
It has been a year since my mastectomy. Did 4a/c, 12taxol, 28 radiation. Started tamoxifen February 1st. There are days that I can hardly go. Low temp and my BP goes up and down. Have a screaming headache. First diagnostic mammo was today and that was clear. I feel so yucky that its hard to be happy about it. I also have these shaking/shivering spells in the night (at least one per night) It wakes me up but my onc has no explanation for it.
I don't think that I am cold because I am usually having a hot flash. Hate to ignore it if it is something serious. Also have had a tooth ache the past couple weeks and am on an antibiotic.
How long before feeling better kicks in?
CindyLou, April 2012
I am sorry to hear that you are having such a hard time, but very glad to hear that your one-year follow-up screening was negative. You have had a very hard year with a mastectomy, chemo and radiation; all that was a huge assault on your body and it takes time to recover. It took me over a year after my surgery, chemo and radiation to feel like I was back to my normal.
Although I did not take tamoxifen, I have heard from friends that it often causes a variety of symptoms like the ones you describe. Perhaps you can talk with your health care provider about the side effects of tamoxifen to see whether the drug might be causing some of your symptoms.
I hope that you will soon start to feel better.
Where is the best place to go for chemo?
Peggy, April 2012
That is a very good question! I really believe it depends on your circumstances. I am wondering if you mean chemo specifically, or treatment in general. I ask that because, if you already have a trusted oncologist, that's a good place to start. Who does he/she recommend? Your oncologist prescribes chemotherapy treatment and the facility will administer it. Many facilities offer other support and integrative services and these may also influence your decision. Check with your doctor or clinic for information about support services. You never know what might come up and it's helpful if you know ahead of time about what is available.
I had several good options and will share how I made my decision. First, I wanted a doctor who was familiar with my kind of cancer. I chose a teaching/research hospital, as my cancer was a bit rare. I wanted a doctor who was familiar with the research and had resources. It was important to me that my doctor was comfortable with my questions and respected my interest in understanding my treatment options. It's okay to ask what experience they have with your cancer and to ask about their outcomes. And you can choose how much information you want; it can be overwhelming!
A very important consideration, in my opinion, is matching your support system with available resources. I wanted to know that my medical insurance was contracted with the facility. I didn't want any surprises. It was also reassuring to me that I had a team who all worked together. They were all knowledgeable, compassionate and familiar with me, and each other. All my treatment was in one place. But, my treatment was 40 miles away. I decided that was doable as I had a number of friends and relatives who were available to help with transportation. Infusion days were very long days and I was grateful for the support of friends and family. Infusion days sometimes lasted 8 hours due to blood draws and meetings with my doctor. And, in addition to the chemo for the cancer, it's not unusual to receive other medications that can make you a bit sleepy. It was nice to let someone else do the driving!
To sum it all up, it is important to take all of your needs into consideration. That, I think, will provide the best chemo. Choose a team that you have confidence in. You may want to visit the facility you are considering to get a feel for it. You will spend a lot of time there! Again, choosing someone who you believe you can work with is important. And finally, considering your resources and support system is a must.
Chemo can be anxiety provoking. A little footwork up front can be helpful and reduce the stress in the long run. My clinic provided a class prior to chemo that also addressed my questions and relieved a lot of the anxiety, as I just felt more prepared.
A friend who had lumpectomy for stage almost-zero breast cancer last year has several lumps in the other breast now that they are watching. Should I be concerned?
May, April 2012
It is always frightening when someone we care about runs the risk of developing cancer. In your email, you say your friend is being monitored for additional lumps in her other breast which leads me to believe her doctor will take appropriate action if deemed necessary.
I was diagnosed with early stage breast cancer (DCIS) in 2000 and have been cancer free since my treatment. I do understand the feelings of anxiety that you both may be feeling.
It is easy for me to say not to worry about your friend. I can say however, that she is lucky to have someone like you supporting her. Hopefully these lumps will prove to be nothing serious and she will require nothing more then monitoring.
Good luck to you both.
Find more information about ductal carcinoma in situ (DCIS) in our Taking Charge patient guide on breast and ovarian cancer.
I have a family history of breast cancer. Should I be tested for BRCA1 or BRCA2?
(BRCA1 and BRCA2 are genetic mutations associated with the development of inherited breast and ovarian cancers.)
Anonymous, March 2012
I would suggest talking to a genetic risk counselor. They would look at your family history and be able to advise you on whether or not to move forward. And, depending on your family history, medical insurance may be eligible for the testing. A genetic risk counselor can be very helpful in weighing the pros and cons of testing.
How difficult is chemotherapy?
Anonymous, March 2012
The side effects of chemotherapy can be challenging, but they can be managed. I experienced nausea the first week after my infusion, so I learned to eat lightly, take it easy and take my anti-nausea medication as needed. However, some people experience very little nausea. People's bodies respond differently, so you may or may not experience what I did. It's important to take care of yourself and give yourself plenty of rest during this time.
Alybee, peer support volunteer
I have been diagnosed with DCIS and the doctor suggests a lumpectomy. Will it be painful after the surgery, and will I have a scar?
(Ductal carcinoma in situ (DCIS) is the most common non-invasive breast cancer. Ductal means the cancer started inside the milk ducts. In situ means "in its original place." DCIS is called "non-invasive" because it hasn't spread beyond the milk duct. DCIS isn't life-threatening, but it can increase the risk of developing invasive breast cancer in the future.)
Anonymous, March 2012
I had minimal pain after the procedure and only needed over-the-counter pain medication for a few days. In addition, I bought a couple of sports bras that I wore day and night that also helped. Your scar will be as long as the incision, but should heal and fade somewhat over time. Your doctor can give you more information about scarring.
Do you recommend alternative treatments, such as Chinese herbs and acupuncture in addition to physician-prescribed medications?
Anonymous, March 2012
Following instructions and prescribed medications from your doctor is best. It's also good to discuss alternative treatments with your doctor first to see if they will be good for you. I did acupuncture, yoga and meditation in consultation with my oncologist before and after radiation treatment, and found these methods to be beneficial for me.
Kathy, peer support volunteer
I have a choice whether to receive a lumpectomy, then radiation and possibly chemotherapy. The oncologist said I could also consider a mastectomy. I'm confused and would like to know why you chose a mastectomy over a lumpectomy?
Anonymous, March 2012
I chose a mastectomy for several reasons. One, I wanted to get it over with as soon as possible, and radiation and chemotherapy can go on for months. Also, I felt (and this is not a proven medical statistic) that there was less chance of metastasis or recurrence with a radical mastectomy. While my recovery was not exactly a piece of cake, I never regretted my decision.
Sarah M., peer support volunteer
I have young children and worry about being very sick and possibly dying from this cancer. What should I tell my children so that I won't make them worry too much?
Anonymous, March 2012
My child was 11 when I was diagnosed, so I understand your concerns. I waited until I had as much understanding of my disease and the treatments as I could until I told my child. I reassured her that I trusted my health care providers and that I expected to get through my treatments well.
How did you discover your invasive lobular cancer?
Anonymous, March 2012
My regular physician discovered a lump in my breast during my annual physical. The California Pacific Medical Center Breast Center performed multiple tests to determine if the lump was cancerous and then assessed the type, size and location of the cancer.
What helped you most while you were going through chemotherapy?
Anonymous, March 2012
I pretty much followed what the doctors and nurses told me to do. I took my medication as needed, drank as much water as possible and kept very quiet and still so my body could manage and rest. The worst side effect only lasted a couple of days and by your second round, you know what to expect, so it's easier to deal with.
I was so strong and optimistic during treatment but now that I am done, everything seems so hard. Shouldn't I just be happy that I am done?
Anonymous, March 2012
For many women, the part after active treatment is the hardest. All your friends and relatives think you should put everything behind and get back to normal life, not realizing that this is the hardest time. All that is going through your head is "Did I choose the right treatment? Am I just supposed to wait and do nothing? Will it come back? Why am I so sad?"
This phase will pass but realize that this is the first time you get to think after a battle period. Seek support from other women who understand what you went through. Eventually, those fears and doubts will fade (most of the time).