Prostate Cancer Peer Support Q & A
I am experiencing anxiety (in all parts of my life). I am post intensity modulated radiation therapy (IMRT) treatment for prostate. I would like to get my mojo back and have my spirits lifted. I am trying to smile and take some medication, but I feel much stress.
Mark, October 2013
Mark, I can only address stress that might have occurred due to your radiation treatment. I don't know what grade cancer you had, but my experience is that many men worry that the radiation did not get all the cancer. There are many, many men for whom the radiation was the cure. What I suggest you do is go to a prostate cancer support group. There is one at UCSF, click here for more information on support groups. Bring your biopsy results and the men there will better be able to relate to your situation.
My PSA reading is about 7. I am 67. I have no noticeable symptoms. My doctor, a urologist, wants to proceed with a biopsy in the near future. Are there any circumstances where it would be inadvisable to have a biopsy at this point?
Pete, July 2013
My experience as a support group leader and patient is that once other causes for a PSA of 7 have been eliminated, such as an infection, an enlarged prostate, and trauma, then a biopsy would be the usual thing to do, as advised by a medical provider.
My boyfriend just got diagnosed with prostate cancer and one of his options is robotic-assisted laparoscopic prostatectomy. Is this safer than regular open surgery or radiation? I'm still trying to understand all this. The doctor told us what will be the best for him in terms of his health and the risks involved. I appreciate your time and information greatly.
Concerned Girlfriend, June 2013
Dear Concerned Girlfriend,
Based on my experience, the most important thing is the skill of the physician, be it robotic surgery, open surgery, or radiation. I know this is a tough time right now. It is good that you are there for this person. The following information really helped me and others learn more about the treatment options: Prostate cancer information
I am not a physician and cannot provide medical advice, but based on my own experience with prostate cancer, I can offer some suggestions.
First of all, I commend you for partnering with and supporting your boyfriend during this difficult decision-making time. That will be a great help to the both of you going forward.
Based on my experience, if the prostate cancer experts that you have confidence in are in agreement that your boyfriend needs treatment, and that a "watch and wait" strategy is not an option, then they may give him treatment options such as surgical intervention and/or external beam radiation treatment. You will want to learn about both of these approaches, especially including their potential side effects. In my case, I was told I needed treatment and that either surgery (prostate removal) or radiation treatments would be equally effective. The choice was mine.
There are many individual factors and biomarkers that go into each recommendation so one cannot easily generalize. And, it is usually a good idea to seek a second opinion on the major treatment decisions. Again, in my case, I found this quite helpful as two different clinics, both with outstanding reputations, agreed on the overall approach.
If your boyfriend is considering surgery, then there is a robot-assisted procedure and there is an "open" procedure. Again, you will want to learn about the differences. At least from what I've read, it seems like neither procedure is considered to be better than the other. Again, you will want to learn and ask about success rates from your medical provider and ask questions about the persistence of side effects (especially urination control and sexual function) with any of these treatments.
Overall, my advice is to learn as much as possible from cancer centers, cancer societies and trusted web sites, so you can ask the right questions and make decisions you are confident with, recognizing that with this disease, there are LOTS of ongoing discussions about the best approaches in general. And the best approach is different depending on each individual patient's situation.
In short, learn a lot and ask a lot of questions, then go forward confidently with YOUR decision!
I had prostate cancer with a PSA of 169. The urologist put me on Lupron. The PSA went down to 1.0 and the cancer went away. After a couple of years, I'm having symptoms again. This time, I don't have insurance. Is there a way that I can get a shot and just pay for it out of pocket? How much is it likely to cost?
Leeks, June 2013
The Abbott Patient Assistance Foundation helps people obtain Lupron medication: https://www.rxhope.com/PAP/pdf/Abbott_PAF_Lupron.pdf
There are organizations that help with finding more affordable medication. Please review NeedyMeds at http://www.needymeds.org/ and the Medicine Program at http://www.themedicineprogram.com/ for more assistance with drug treatments.
You may find helpful information on the following website on CancerCare: http://www.cancercare.org/publications/62-sources_of_financial_assistance.
There are also a number of organizations that help low-income or uninsured patients. Please take a look at the following and check with the organization regarding availability.
Financial Assistance for Low-Income or Uninsured Patients
2. Susan G. Komen for the Cure Linking A.R.M.S. Program
3. Patient Services Incorporated
4. Patient Access Network
All the best to you,
Peer Support Team
My husband had a positive blood test for prostate cancer nine months ago. He had an ultrasound and the family doctor said he should check it again later. It has been nine months now and we don't even have an appointment set up. Is there anything we can do to move this along?
Judy, May 2013
If your husband is a UCSF Medical Center client, he can sign up for UCSF's patient portal, UCSF MyChart, if he has not already done so. UCSF MyChart is a way of communicating electronically with your doctor. You can also see many of your lab test results, request appointments and medication refills, and use other services. UCSF MyChart is free, safe and convenient. To sign up, please email firstname.lastname@example.org.
If he is not a UCSF client, it is important to continue making contact with his medical providers and to let them know about your concerns. Also, many people navigating through this have said that pro-action and the communication of needs to the medical team have helped. Good luck with the appointments.
Is there a cancer center near Wasaga Beach, Ontario?
Ernst, May 2013
The Princess Margaret Cancer Center in Toronto also cancer prevention and treatment services.
We hope this information is helpful. All the best to you.
Peer Support Team
Can you recommend any online support groups for a prostate cancer patient and one for his spouse?
Heidi, May 2013
Dear Heidi, online support groups for prostate cancer patients are offered by the Us TOO International Prostate Cancer Education and Support Network, Cancer Support Community and Male Care, a men's cancer survivor organization.
In addition to online information, these resources may help you find support groups in your community.
The UCSF Cancer Peer Support Program also has trained peer volunteers who can offer practical information and emotional support to prostate cancer patients by phone. For more information, see www.ucsfhealth.org/peersupportcancer.
We hope this information is helpful.
Peer Support Team
My doctor told me my PSA reading went up so he put me on avodent for 6 months to see if it would go down. It did not so he said I would need a biopsy. I was a little in shock and never asked enough questions. He said he would phone and that they would call me. My questions are: How long of a wait is it for a biopsy? Is there any other reason my PSA would go up other than cancer? What happens after the biopsy? I'm very nervous. Thank you.
Kurt, April 2013
Dear Kurt, I am a volunteer in the peer support program and can offer you some support and information on my experiences, but I cannot, of course, provide medical information, opinion or advice.
First of all, I urge you to take a deep breath and relax. You are proceeding quite logically to try and understand what the options and risks are with the various pathways now open to you.
As you no doubt know, there has been much news/opinion lately on the use of PSA tests and whether or not they should be used for routine screening. There is not complete agreement on what should be done if PSA is rising, e.g., whether to proceed with a biopsy or not, whether to observe the PSA levels over time and adopt a watchful waiting approach, whether to explore other tests, etc. It is not easy to sort all this out and there is not necessarily one right answer.
I would recommend three courses of action:
1. Learn as much as you can from your medical team and also from support groups and resource centers such as the Cancer Resource Center at UCSF, about how to proceed with a decision on next steps.
2. Work with a urologist you trust and can clearly communicate with and be sure you understand what options they are offering.
3. Obtain a second opinion from a urologist you trust who treats prostate disease.
In my case, I was following a rising PSA for many years and had a number of negative biopsies during that time. Later on, after a continued PSA rise, I did receive a positive biopsy and then proceeded with treatments. I, too, was nervous and scared, but the doctors and nurses helped me calm down. That helped me to relax and, most importantly, enabled me to make an informed decision that was my decision and that I had confidence in.
I am a single 53-year-old man. I have never smoked a day in my life. I checked for prostate cancer in 2007 and then again in May 2012. I am uncertain of what all the results mean. With 8 biopsies in March of this year, I have to wait for more results. I am totally scared and don't know what to expect.
Scott, April 2013
Dear Scott, I understand that you have been checked for prostate cancer a number of times, including the latest tests during March 2013, for which you are awaiting results. I don't know if your prior checks involved biopsies or other indicators.
I cannot give you medical advice but I can pass along some of my experiences with prostate cancer, which included many biopsies over the years. The most important thing to do, in my opinion, is for you to become as informed as possible by using the reputable sites on the Internet, and availing yourself to support centers and support groups in your community. There is a tremendous amount of helpful information out there and much of it is quite readable. It is important to understand that the current protocols for dealing with prostate issues have changed quite a bit over the past few years and there are many options depending on the details of the diagnosis. There is no single path.
As I understand it from your note, you have not, at this time, been diagnosed with prostate cancer but are awaiting biopsy results. When you receive your results, you will need to make some decisions in full concert with your medical team. You may also wish to contact another physician for a second opinion. Thus, a second piece of advice is to be sure you have a medical team in place that you are confident in and that you can communicate with.
My third recommendation is to try to eliminate your fright and replace it with confidence in your ability to make decisions that you have confidence in. I know this is easier said than done, but my experience is that my fears were greatly reduced when I met with the medical team and was assured that there were treatments that would help me. The team was right!
I am 57 with a PSA of 9.5. Only 5 percent of the length of one specimen had cancer. I have a Gleason score of 6 and an enlarged prostate. The doctor said I have the option of active surveillance, radiation or surgery. I have appointments to meet the surgeon and radiologist but I am currently leaning towards surgery. I simply want to get rid of the cancer. I'm concerned that when I'm older and not quite as strong or healthy, how will my bladder control be affected? Can I expect to be required to have a full-time catheter or required to wear Depends? Any insight would be greatly appreciated.
Allen, April 2013
Dear Allen, I am sorry that you are going through this. Based on the experience of the men in my support group, it seems that incontinence has been temporary for them. I do not know of anyone who has had a permanent catheter. I am sure you are very anxious about this situation. It is best to ask your physician regarding further medical questions and what medical treatment to take. I hope this helps.
I am 52 and have had prostate tests every year since I was 25. Three years ago, my PSA came back higher than normal and then this year, after a 4.9 PSA test, I was sent to the specialist. He suggested a biopsy so I had to have that done and had one section with a 1+3 Gleason score. So, they suggested a second biopsy a month later and now the same section had a 1+3 Gleason score and the area above was 3+4 Gleason score. They say this takes me from active surveillance to either radiation or a full removal. So, I am at odds. Should I leave it alone knowing it won't go away but might also not change much for another few years or go through the full surgery? Not sure which way to go.
Chris, April 2013
I am sorry that you are going through this diagnosis. I run a prostate cancer support group with hundreds of men with prostate cancer and I myself am a prostate cancer survivor. You have not indicated the length of the 3+4 sample. That could make a difference in the treatment you choose. I would be glad to communicate with you some more by phone. The Urology department at UCSF is the most appropriate place I can think of to advise you on appropriate treatment, including whether or not you are still an Active Surveillance candidate.
If the positive portion of the sample is very small, there may be some possibility with Active Surveillance, but usually not if very large. Again, this would have to be confirmed and advised by your provider. The experience in my support group was that for men who chose treatment with similar Gleason scores, which have been deemed to need treatment, we have seen similar results with surgery compared to the two radiation modalities. I hope this information helps.
I am 71 years old and had radiation and hormone therapy. My diagnosis was in 2012. I have put on 20 lbs. which is very uncomfortable. Do you have any advice for getting rid of this excess? I should finish hormone therapy by November or December of this year. Thank you.
Ken, February 2013
I had radiation with the hormone therapy in 2007 at age 66 so it's been a while. The principal side effect for me was the "hot flashes" which were annoying but not a serious problem. I don't recall experiencing significant weight gain. I would ask your medical team if such gain is indeed directly related to the hormones or perhaps something else has changed — exercise, more sedentary lifestyle, overall diet, etc. For me, it was very helpful throughout that I continue on a regular exercise program. This provided physical and most importantly, mental benefits.
I suggest verifying with your medical team to make sure that this is not a medical issue. Good luck on the rest of your treatments.
I am 67 and I am on lupron depot (leuprolide acetate for depot suspension). I have been told this is the only thing that can be done. The tests show cancer in my bones and lymph nodes. My PSA has come down to near zero. My question is: Why won't the doctors give me an estimate of how much time I have left? All I can get is, "You are terminal. We will keep your comfort as the main treatment concern."
Mike, January 2013
Dear Mike, I am so sorry for what you are going through. There are doctors who can tell you more about what can be tried or not, but also, what obviously is very important to you is to know your prognosis; how long you might live. I might suggest a phone consultation with a medical oncologist at UCSF, if this is something you are interested in.
In my support group, there are men who have been on hormone therapy for 10 and more years. And, in my perspective and observation, your low PSA seems encouraging, though I am not a medical provider myself. I highly recommend checking with other oncologists to verify your medical condition and if it is terminal, that you may obtain a proper prognosis.
I had robotic surgery done 9 weeks ago to remove my prostate. I was incontinent for 7 weeks but am now continent. I still have ED and it doesn't seem to be improving. I take 50 mg. of Viagra weekly. I'm wondering how long a person suffers through this. I am a healthy, 65-year-old man who never had a problem achieving an erection.
Upham, January 2013
ED is widely known as a possible side effect of prostatectomy. I'm not sure what your M.D.s have told you to expect, but I believe the effect varies widely in seriousness and duration. In general, I believe it usually improves over time.
Here's what my personal experience has been as best as I can remember it. I had open surgery, using nerve-sparing techniques as much as possible. Of course, I did need to regain urine control over a couple of months and that went reasonably well. Erectile function was not returning even with Viagra. An injection protocol that resulted in a full and lasting erection was recommended and I began using that with good results.
As it turned out, I needed further prostate treatment using radiation therapy and anti-androgen meds, so no sexual activity was possible over that 5-month time span. After that, I began to notice that the erectile function seemed to be returning gradually over time, even without Viagra or penile injections. That continued and now at age 71, I have reasonable erectile function some 6 years after surgery without using Viagra.
I realize side effects vary in type and duration so it is difficult to know what lies ahead, but I do encourage you to pursue full function aggressively, using the knowledge base and techniques recommended and provided by your medical providers.
I was recently told that I have prostate cancer. I caught it in time so it is small. I have decided to have surgery but I have second thoughts about it. Because I caught it early, should I change my mind and go with another treatment? What would you suggest?
Glenn, January 2013
Dear Glenn, My case was much more serious and I didn't have any options other than surgery as it had escaped the prostrate capsule. The surgery went very well and most of the medication that I needed after leaving the hospital the next day was only two extra-strength Tylenol. I had a nerve-sparing procedure done. Dealing with the catheter for 10 days was very easy for me. When I had to leave the house, I wore shorts and carried a back pack for the equipment.
As far as sexual ability, I found that instead of using Viagra, the vacuum pump would work much better for me with more satisfaction and with less side effects. Dr. Carroll at UCSF and his surgery team had done such a wonderful job with clean margins that I did not have to experience any radiation. I was told to have the ultra-sensitive PSA tests four times a year, which I had for 10 years. We celebrated every time the results were undetectable. I am now 70 years young and 12 years after my surgery. I go for the test every six months as a preventative measure to catch any possible early detection on recurrence of cancer. I was very blessed to have had Dr. Carroll at UCSF be my surgeon along with his very fine staff. I owe a huge debt of gratitude to them for saving my life, freeing me from cancer and enjoying our nine grandchildren and 46 years of marriage.
Good luck in your decisions and please do consult with your doctors to see what treatments you will do.
My Gleason score is 4 plus 3. My bone scan is normal (no spread of cancer). My CT scan is normal (no spread of cancer). Based on my Gleason score of 4 plus 3, I'm leaning towards surgery based on my understanding that 4 plus 3 shows that I have an aggressive form of prostate cancer. I was wondering if my thinking is correct. I won't meet with my surgeon until mid-January. I'm exploring my options and trying to make sure I'm on the right track. Thanks for your help!
Tim, December 2012
What your options for treatment depend on more than just your Gleason score. For instance, the number and length of positive samples. If there is a support group near you, I suggest that you go to a meeting where other men can tell you what their experiences have been and how they made their choices. You might want to check with your provider regarding other treatment options as well. Why don't you write again after you see your doctor?
How significant is a PSA level of 0.25, ten years after a radical prostatectomy?
Allan, October 2012
Depending on what the last series of PSA tests have registered, 0.25 may not be worrisome. For instance, if the reading has been about 0.25 for years then that might be OK. If it has been steadily rising, perhaps something is going on. In any case, consulting with your doctor would be the best thing to do. All the best.
Should I proceed with radiation treatments given a PSA reading of 17.7?
Brian, October 2012
There are many other considerations such as Gleason score, tumor volume and more. It is my experience that with certain tumors, radiation is called for. An experienced urologist will be the best to say. It is a good idea to explore all these factors with your urologist in order to find the prescribed treatment for you. All the best.
I had a radical prostatectomy 5 years ago at Stanford Cancer Center. After the surgery, I was informed that all the cancer was contained in the prostate and after removal, it had not spread. Well, after a year, my PSA started to rise, then it continued to go up. I was advised by my surgeon to get radiation. I did 6 weeks of daily external radiation treatments that did not work because 8 months later, the PSA was the same as before the radiation, at 0.20. Now, a year later, the PSA has gone to 0.34 and I am told to go to an oncologist for further treatment. Since the surgery, I have not been able to get an erection and my sex life ended. At first, I was going to have radiation where they shoot a beam at the prostate but was convinced by family to have surgery. Now, I am damn sorry I had the surgery. I feel like my life has been ruined. Maintaining my sex life is important to me.
Steve, August 2012
Steve, as someone who has experienced some of the issues you brought up, I certainly empathize with you. Let me try to provide an outlook based on my experience. I cannot, of course, provide medical information or advice.
I had a radical prostatectomy some 6 years ago. The following year, there was a small, but measurable increase in my PSA and I was advised to take a course of radiation similar to what you describe. While my sexual function has improved beyond what it was post-surgery and post-radiation, there were periods of time when I had little or no sexual function. During this time, I was advised to try the injection method to generate an erection. Surprisingly, this was actually quite satisfactory, and I have since talked to patients who use this method with success, shortly after their surgery.
For me, I was also initially given a choice between surgery or radiation. In the end, I required both, but I remain confident in the decision-making process that led me to the surgery.
I know you are discouraged by the rising PSA as any of us post-treatment patients in this situation would be, but I do encourage you to gather as much information as you can as to what the options are for treatment, and then meet with a urologic oncologist who has experience with rising PSA after treatments. I might also suggest looking into prostate cancer support groups in your area. I have found it helpful to be able to sit and talk with others who are going through some of the same situations and choices.
All the best,
I have read that a prostate biopsy has the danger of spreading cancer cells to other parts of the body, that there are alternatives such as MRI/ MRI-SPECTROSCOPY which can be used to diagnose cancer, and that UCSF is a pioneering site for this procedure. I am almost 77 years old, with PSA of 4.6 six months ago. It was 3.5 one year ago. And the PSA was 2.8 before that. I am leery about obtaining a biopsy. Any comments, please.
Bige, August 2012
Dear Bige, As a support group leader, your question comes up all the time. From what I have read, there have been numerous studies that have shown no spread with the biopsy. CAN this happen? Who knows.
However, before you consider a biopsy you should ask your doctor about other tests which can help ascertain if a biopsy is even called for. Currently there is the Free-PSA , the PCA-3, and the PHI test, all non-invasive which you may ask your doctor about. Good luck.
Seven years ago, I was treated with external beam radiation. Now, I find myself with normal bone and CAT scans, asymptomatic, in good health, but my PSA has started to gradually go up. Can anybody submit any information on a similar condition?
Thankful, August 2012
Dear Thankful, Without knowing what the velocity (rise in PSA over time) is, it is hard to say. My experience with the men in my support group is that if the PSA keeps rising, doubling in months, not years, then more treatment may be necessary. Treatments are changing and while hormone therapy might have been called for in the past, there are other options. It's important to get more advice from your doctor who knows your medical history best.
A friend has been diagnosed with prostate cancer and we are very scared. The doctor called him 2 days ago. He is supposed to go to the doctor next week. What are the questions that he should ask? The tumor is in the border of the prostate.
T, August 2012
T, First, it is normal to be scared, but in my opinion, there is a lot more to find out. You want to ask the doctor for the details of the biopsy report (getting a copy to take with you is an excellent idea). You will want to know the stage of the cancer, the Gleason grade, how many samples were positive and what percentage of each positive sample had cancer. Ask the doctor if he or she would call the cancer early stage, intermediate stage or late stage. And, ask the doctor what treatments, if any, he or she recommends. Feel free to give us any follow up questions you have. I am a prostate cancer survivor and can tell you about my experiences but cannot offer medical advice.
I recommend a deep breath at this point.
After complete removal of ductal prostate cancer, PSA is still rising. What should be the next course of treatment for my dad?
Shanda, August 2012
Shanda, I'm sorry to hear about your dad. It seems that he may need further consultation with his medical provider due to the rising PSA. Because I have limited experience as a support group leader and I'm not a physician, I suggest he contact his physician about what further options he could take in addition to surgery. I underwent testosterone deprivation treatments that helped me. However, my condition may be different from your dad's, which is why I suggest he contact his medical provider for more information regarding his specific situation.
I have been told I have stage 2 prostate cancer that is contained in the prostate and is not aggressive. It is in five places, mostly on the left side of the prostate, and it's not the type I can watch and wait. Now, I'm going to have a pelvic X-ray. What should I do? Thank you.
Charles, August 2012
Charles, thank you for your inquiry. I was diagnosed and treated some six years ago, but still remember well the moments of uncertainty when I was at a point of "what to do next"? While I cannot, of course, give you medical advice on "what to do," I can relate some of my experiences.
It sounds from your note that you have been positively diagnosed with prostate cancer. Now, the challenge is to understand what the options are and make decisions on what course to proceed.
The first and most important thing that I did was to seek medical advice from the most competent cancer MDs I had access to and to understand from them what the options were. For me, this did involve obtaining a second opinion that was fully independent from the first. Having done this, I found that much of the fear and uncertainty was abated.
It was important for me and my spouse to sit down with the surgeon or radiologist and have them go through the options and risks in a manner that we could understand. I strongly advise having a second person with you at this visit as a second pair of ears to be clear on the information.
After my consults, I was given the choice of one of two treatment plans. I understood the options and their respective risks, and then I made the decision on which way to go. It was important to me that it was first of all my decision, and second that I had full confidence in my decision as it was based on information that I had confidence in.
In short, it was for me not so much, "what should I do" but rather, "what's my overall plan based on the very best medical advice I can obtain."
All the best in your decision making and treatments.
My dad has had both prostate and bone cancer since 2009. Lately, it's getting harder and harder to deal with knowing he's going to be gone one day. Are there any groups I can talk with?
Cowboy, July 2012
If you live near San Francisco, UCSF Medical Center offers a support group for family and friends of cancer patients that is held every second and fourth Thursday of the month from 4 to 5 p.m. Please contact social worker Sarah Hong at (415) 353-7632 to attend. More information about UCSF support groups is available at www.UCSFhealth.org/supportgroups. Nationally, you may find helpful information on the National Comprehensive Cancer Network website at www.nccn.com/cancer-caregiver.html. If you would like more information about resources for family members and caregivers, please contact our peer support program coordinator at (415) 885-7801.
Peer Support Team
I am a 54 y/o white male and was diagnosed with prostate cancer on 6/28/12. I have had a bone scan and cancer is in prostate only. My PSA was 7.1 on 5/22 and 7.27 on 7/12. I was told my cancer is only in the left side of my prostate and pathology report showed 2 of the 6 sections on left are Gleason 9 (both 4+5) and 4 of 6 sections are Gleason 7 (all 4+3). I was told my stage was T2b. I have seen several surgeons and radiology oncologist and am trying to make the decision of which way to go, RP (radical prostatectomy) or hormone/radiation therapy (external beam, I believe it's called). I read the document I found in another Q&A that described the surgery in the most detail I've seen yet. I read all 16 pages and quite frankly was weak while reading it. I'm scared to death of the surgery, mostly the possible long-term side effects. Can anybody give me advice on their experience with surgery or going radiation w/o surgery at this point? It is honestly overwhelming right now trying to learn about something I've never bothered to understand until now and then considering all the different treatment options and their possible issues. Thanks.
JD, July 2012
Dear JD, I am sorry to hear what you are going through. I decided on surgery and had a very easy time of it. I had never had any kind of surgery and frankly was very scared. I took a pre-surgery class and listened to "guided visualization" CD's. Once I got myself to the hospital, my experience was very good. I was sedated and knew/felt nothing until I woke up and was asked by my wife if she could bring me anything and I responded, "a pizza please". I was hungry! Recovery was quick: I was playing singles tennis again in six weeks. This was not robotic surgery and the six weeks was typical. My side effects were twofold. The dripping of urine was a lot at first and then little by little and got better. By 3 months, I was dry. Regarding erection problems, I chose not to have nerve sparing because I had a lot of cancer. I have used vacuum pumps and injection therapy for many years and I am VERY satisfied. My PSA has been undetectable for 14 years now. I am glad I had the surgery.
Your history sounds very similar to mine, with exception of age. At the time of my diagnosis, I was 74 (not 54) but was in good health otherwise. I, too, had the very difficult dilemma of trying to decide between surgery versus radiation with seed implantation and hormone therapy. Because of my age, I was guided to the non-operative treatment. This consisted of 5 weeks of daily radiation therapy and 2 years of hormone therapy, which consisted of an injection every 3 months. A few weeks after I completed the radiation therapy I had radioactive seed implantation, which was carried out under general anesthesia. The procedure was painless and I went home the same day. When I was taking hormones (Lupron), I had occasional “hot flashes.” I gained a few pounds over the 2 years, which I lost within 6 months after therapy ended. I also took high doses of calcium and had a yearly bone scan to watch for osteopenia. My main complaint has been impotence, which was already becoming a problem prior to treatment.
In my mind, the question is which treatment has the best long-term results considering the PSA and Gleason scores. I personally can’t advise you on that question. I do remember that reading about the surgery was intimidating. Therefore, it’s probably best to speak with your surgeon and with a patient of your approximate age who has undergone a surgical procedure. Good luck with the decision-making . . . It’s the hardest part of the entire treatment.
I received prostate cancer diagnosis about 2 weeks ago. I'm educating myself about possible treatments. Basic questions: Do I need a second opinion and from who? Is there anyone who could help me navigate the choices I must make about the treatment? Thank you.
Harry, July 2012
Harry, it is good that you are being proactive about your treatment process. We recommend that you obtain all the necessary information from your doctor first. Then, after you know your doctor's proposed treatment plan, you may want to seek a second opinion. That is a personal decision. A conversation with a peer support volunteer online or over the phone also might be helpful after you know the treatment proposed for you. If you have any questions or would like further assistance, please call the peer support program coordinator at (415) 885-7801.
Peer Support Team
How significant is a PSA rise from .03 to .05? The .05 was 6 months after RRP (robotic radical prostatectomy) and 3 months after .03 PSA.
Jerry, June 2012
I suggest you ask your doctor. It is important to look at the whole clinical picture including PSA history, type of tumor and other factors. It is always best to have a more thorough conversation with a medical provider to see if treatment is necessary.
I would like feedback from men who have had radiation therapy after prostate removal.
Vernon, June 2012
Vernon, I had prostate surgery in November 2006. Somewhere about mid-year in 2007 I had a slight increase in PSA from a previous undetectable level. After further confirming that, the physicians recommended a course of external modulated beam radiation therapy. My treatment was accompanied by anti-androgen hormone treatments via long term injection. If I recall, the hormone treatments were 2 months before the radiation, during the radiation and 2 months after the radiation. The radiation was about 7 weeks, with a short appointment each weekday.
You can find information online about the side effects from either or both of these treatments. Fatigue was a factor for me in the later stages of the radiation treatments and I had some digestive problems, although these were quite mild in my case.
Since the completion of the radiation and hormone treatments, my PSA has stayed at an undetectable level.
Hope this helps.
My husband had prostate cancer 7 years ago. They did surgery and claimed they removed it all. They performed PSA testing and because it fluctuates no higher than 40 down to 5, they have been giving him hormone therapy. We requested all scans and tests and all came back normal. But, they continue to do the injections. Is this normal, especially with the controversy about PSA testing? I don't feel this is normal but I'm not a doctor. Can anyone help me understand this decision? Please help. I am worried his body is going to get used to the hormones and then if cancer is detected then there will be little left to do.
Silvia, June 2012
Hi Silvia. I am responding as a volunteer support person based on my personal experience with prostate cancer some time ago. I am not a physician, so the advice I am able to give you is not medical advice but suggestions on how to proceed. You have raised some important questions regarding testing and treatments.
I know that having been treated surgically and later on having to start hormone therapy is a concern. The issues you raise are important and first of all, you need clarification of your husband's medical situation and options for going forward. I strongly urge you to make an appointment with a prostate cancer specialist and ask for clarifications, explanations and alternatives while you sit with the doctor together with your husband. Ask for clarification when necessary.
What is the risk when the lymph nodes are touched in a prostate cancer?
Mike, June 2012
Mike, assuming "touched" means found to have prostate cancer cells, then the cancer has spread from the prostate to the lymph nodes and consideration will be made if or when to treat. Please consult with your provider regarding this issue.
My 52-year-old dad was diagnosed with non-aggressive prostate cancer. The doctors told him that they will be monitoring it closely but they are not going to start any treatment. I am his 23-year-old daughter and I feel very nervous about this decision. What are some helpful ways I can support my dad? Is there anyone that can reassure me out there?
Katy, May 2012
Katy, I am not a doctor and cannot provide medical advice. I do know that many prostate cancer specialists continually monitor their patients who have been diagnosed with less aggressive prostate cancer. They do NOT jump to immediate aggressive treatment, e.g. surgery or radiation. Overtreatment can be a serious issue as it can lead to side effects that present major quality of life issues for someone of your father's young age. So a "watch and wait" approach is often the best alternative. It is a matter of risk management.
I would say the key is to hook up with an experienced and respected urological oncologist and have them manage this over time with regular evaluations that may involve lab tests or other diagnostics to assess and manage risk.
As for you, I would try to learn more at the layperson's level via reliable websites such as those of the National Institutes of Health and also learn more about current discussions of this prostate cancer treatment dilemma by searching major news sites such as those of the New York Times.
All the best to you and your father.
How can I alleviate the soreness caused by urinary dribbling? I had robotic surgery.
Steve, May 2012
I had surgery by the "open" procedure at UCSF some 6 years ago. I'm not sure how the robotic procedure differs in terms of post-surgery urinary function, but I had the following experience. After surgery about a week or so when the catheter was removed, I didn't have much sense of the urinary function at all and definitely needed pads to absorb the urine. That resolved quickly at first and then more gradually over a period of a couple of months. While I experienced many wet moments when the pad was wet and needed to be changed, I do not recall experiencing any soreness or irritation due to the dribbling you describe. This much time later I now and then experience a slight "dribble" but it is not enough to require use of a pad.
I presume the medical folks can advise as to use of a topical ointment of some sort to help out.
I am scheduled for the removal of my prostrate due to cancer. What can I expect after surgery: pain, time to heal, what drugs, etc.?
Len, April 2012
The answer to this is very detailed and Dr. Peter Carroll, a prostate cancer specialist, and I have answered it very well at http://urology.ucsf.edu/patientGuides/pdf/uroOnc/Radical_Prostectomy.pdf. So, my recommendation is to read this friendly document. I hope this helps.
Is radiation therapy the most logical next step for a Gleason 7, psa 22.4 (pre-surgery) and Gleason 9 T2cNoMo (after surgery) patient positive at the apical margins, clear seminal vesicles and lymph, perineural invasion, age 67?
Jeff, April 2012
The experience of virtually all the men in my support group who have been where you are is to, yes, have external beam radiation.
How did you choose your course of treatment?
Anonymous, March 2012
I was offered two different treatments and I had to choose one. I educated myself, used support groups and gathered second opinions with the doctor's guidance.
I understand that anti-androgen drug therapy usually accompanies radiation therapy and that the side effects are quite strong. What was your experience?
Anonymous, March 2012
A course of drug therapy did accompany my radiation treatments -- two months prior, during and two months after. For me, the drug removed any sexual desire, but there are other effects which no doubt vary from patient to patient. The one I recall was the occasional "hot flashes," an entirely new experience, annoying but not serious.
Side effective reversed a month or so after drug therapy was completed.
What treatment did you have? What side effects can I expect?
Anonymous, March 2012
I received hormone therapy and radiation therapy, including radioactive seed implantation. I experienced some side effects as a result of treatment, including slight weight gain, anxiety and mild fatigue.
If I have to go on hormone therapy will I ever have my libido again?
Anonymous, March 2012
Yes, it should come back when your testosterone comes back.
Can you recommend a support group near me.
Anonymous, March 2012
I am 70 years old and have just been diagnosed with 1 mm of Gleason 3+3 prostate cancer. Do I need invasive treatment?
Anonymous, March 2012
Not necessarily. Talk to your physician about active surveillance. You can get the UCSF publication on active surveillance online, and at the Cancer Resource Center at 1600 Divisidero St. in San Francisco. You can also listen to an audio interview with Dr. Peter Carroll from UCSF and read about prostate cancer treatments in general on the UCSF Medical Center website.
If I decide to go on active surveillance, how often should I measure my PSA?
Anonymous, March 2012
What are the advantages and disadvantages of radiation and surgery?
Anonymous, March 2012
I would suggest to discuss surgery and radiation with an oncologist and a surgeon. Treatment depends on individual needs and age is a factor too. For me , I chose radiation because I felt most comfortable with the outcomes.
What are the side effects of hormone therapy?
Anonymous, March 2012
I had fatigue and anxiety. Talk with an oncologist about what to expect. Always ask the advantages and try to get percentages for success rates.