How to choose treatment for prostate cancer?

Posted by irishpat70 @irishpat70, Apr 15 8:54pm

It is too difficult for my husband to decide on treatment for Prostate Cancer. We have sought 2 different opinions from 2 good healthcare systems. We have met with a radiologist and surgeon from each and they all say he falls right in the middle to choose either treatment type. I would like to present his stats and find out if anyone can help. He is 71 years old and had quad bypass surgery 10 years ago. He has a knee and hip replaced but otherwise does quite well. His Gleason score is 3+4=7. Removal was his initial reaction but was presented with more possible side effects than radiation. The radiation choices are very different, One is hormone shots, radiation 5 days a week for 6 weeks. The other is so different with 5 total rad treatments and uses some different prep procedures. There would be more prep to avoid rectum damage and gold markers placed to help exact rad placement. How in the world do we know what is best? We are not doctors and know doctors are not gods but should know far more than we do! At least to point toward one option or the other based on past patient outcomes. I just wish I could help him more. Thanking you in advance for your input!

First off, don’t let anyone rush you to the knife.
You may wish to begin with Genomic Testing which could provide insight as to how aggressive his cancer is which will help with mapping out a pathway for decision making.
Have a second independent read on the pathology to get concurrence on the Gleason score.
Do the research. Vast amounts of information online posted by many great organisations and research hospitals. Stay focused, take notes. Based upon confirmation by an independent reviewer of the pathology, the results of the Genomic Testing, and your research we start moving on that pathway for making an informed risk based decision. Package it all up and get back in front of your oncologist or urologist. Have that deep dive conversation with all of your information in front of you.
(At 66 years of age, The Genomic Test was decisive in my situation as it indicated low risk cancer. Based upon all the information I collected and reviewed with my medical team I opted for Active Surveillance. So, I get checked every 6 months. PSA, 3TMRI, and digital exam).
I have come to understand that we must be our own advocate and not back away from challenging the doctors when there is uncertainty over any aspect of your journey.
I certainly wish you guys all the best.

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Wayne's advise is right on. I'm 76 and was diagnosed with prostrate cancer 2.5 years ago. My Gleason score was 4+4 and was told by my urologist that it was an aggressive form. However, there was no discussion about genomic testing, nor was there any mention of an MRI to determine if the cancer had spread outside of the prostrate. Where I lived the two options were surgery or Photon radiation. I consulted my GP and a friend who was a doctor and neither could help on best option. I felt like you. What am I supposed to do? The decision was being left upto me.

As I was trying to decide, my wife talked to a friend who mentioned that he knew someone with good success with Proton Beam radiation therapy and was cancer free for 17 years. I checked into the research and determined it was a better option than Photon, but it was only available at limited locations, including the Mayo Clinic. I didn't want surgery so chose Proton Beam therapy treatment at the Phoenix Mayo Clinic. At Mayo I talked to other patients who had the same experience and even had doctors put them down for choosing Proton Therapy. They chose it based on their own research and not doctors' recommendations.

When I got to Mayo I learned there's a lot more to doing a thorough diagnosis then a biopsy. The first thing they did was to put me through a number of scans to rule out any progress of the cancer to my bones or other organs. Fortunately, it was contained in the prostrate. I know men who didn't have this check and later found the cancer had progressed to other organs and bones resulting in the need for severe forms of treatment.
My treatment consisted of 3 "hormone" shots over 18 months and 20 sessions of radiation. Two years later my PSA is negligible. I had not heard about the combination of hormone shots and radiation, but it is the recommended treatment for more advanced forms of the cancer. It improves your chance of survival by 20 %. There's now a form of the Antigen Deprivation Therapy that is in pill form that acts faster and the side effects recede faster. It was approved by the FDA last fall. The shot slowed down the progression of the cancer by shutting off the production of testosterone. It also shrinks the prostrate to make radiation easier and kills any stray cancer cells in your system. It's not a picnic but is necessary.

When I was doing my treatment I heard about the 5 treatment option. It's a stronger form of radiation and Mayo was studying the toxicity of the treatment. They concluded it was safe. I believe the number of treatments is based on how well they think the patient can handle different levels of radiation. At Mayo they had patients with 20 upto 48 sessions. They have a group of specialists who recommend the level of treatment. I also learned about the genomic tests after my treatment. They tested me to see if there could be a hereditary link to my cancer. There wasn't but I learned that they have isolated certain gene mutations that can cause the cancer. They have developed remedies to repair these genes to cure the cancer. The same is true for breast cancer.

I hope this isn't too much information, but this was my journey. I wish it was easier, but take Wayne's advise and get as much information as you can. There are other treatments as well that others have used and are documented on the Mayo Connect. This can be a stressful time so stick together and you can make it through it together. At the end of the treatment they have you ring a bell to signify you are cancer free. My wife and I rang it together because we both went through this together. It's like a huge weight has been lifted from your shoulders.

Best of luck.

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I am 79, my PSA is 5.1, GS 7(3+4), my urologist said his experience with older people having surgery is not the best and he always hesitated when his older patients request surgery. I just completed 44 session of proton beam therapy at Mayo Clinic in Arizona. I had carbon fiduciary markers, no SpaceOAR gel. The experience was very good. I had severe urine blockage after the second week of treatment. I began taking 400 mg ibuprofen + 0.4 mg Flomax and 2 AZO urinary track relief twice a day, which managed the blockage. It had been one week since my last treatment and I am still on the prescriptions mentioned above and will likely be on it for one month total. Urinating is an issue however because I often need to go every hour to hour and a half so I always have to take that into consideration when going somewhere.

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@irishpat70, I can totally understand your and your husband's concern about having to choose treatment. Shouldn't the doctors know what's best? Sometimes I think that the question is put incorrectly to patients – men correct me if I'm wrong. The doctors are giving you the best treatment options right for your husband. No matter which treatment you choose, they are all good and effective treatments specific for your husband's cancer and health status.

Your choice is about the potential side effects of treatment. All treatments (surgery, radiation, hormonal therapy, etc.) have potential side effects. The side effects will vary from person to person, but there are typical side effects for each treatment. Depending on your husband's lifestyle and preferences, he (and you) may be more willing to live with some side effects over others. It's not easy to choose between incontinence, lack of sex desire, hot flashes, etc. But different people find some harder to imagine living with than others.

So, consider not only the treatments, but their associated side effects to help guide your research, the questions you'd like to ask members here and your husband's cancer team, and decisions you and your husband make.

Have you and your husband talked about the side effects?

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Yes treatment is a real quandary. I went through it al in 2014 when I was diagnosed. I did allot of research and chose Focal laser Ablation it is much less invasive and minimal side effects. I now maintain with hormone and marijuana oil therapy. I saw Dr Sperling in Florida. Sperling Prostate clinic.

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@colleenyoung

@irishpat70, I can totally understand your and your husband's concern about having to choose treatment. Shouldn't the doctors know what's best? Sometimes I think that the question is put incorrectly to patients – men correct me if I'm wrong. The doctors are giving you the best treatment options right for your husband. No matter which treatment you choose, they are all good and effective treatments specific for your husband's cancer and health status.

Your choice is about the potential side effects of treatment. All treatments (surgery, radiation, hormonal therapy, etc.) have potential side effects. The side effects will vary from person to person, but there are typical side effects for each treatment. Depending on your husband's lifestyle and preferences, he (and you) may be more willing to live with some side effects over others. It's not easy to choose between incontinence, lack of sex desire, hot flashes, etc. But different people find some harder to imagine living with than others.

So, consider not only the treatments, but their associated side effects to help guide your research, the questions you'd like to ask members here and your husband's cancer team, and decisions you and your husband make.

Have you and your husband talked about the side effects?

Jump to this post

I also had the decipher genomic test, which said 9.9% chance of dying in 10 years, 13% chance of metastasis in 5 years, but a 32% chance it could be worse and received a low high risk total score. My cancer was all on the right side with no spreading indication after two MRIs. Other information very thorough particularly getting as much information as you can.

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@waynen

Wayne's advise is right on. I'm 76 and was diagnosed with prostrate cancer 2.5 years ago. My Gleason score was 4+4 and was told by my urologist that it was an aggressive form. However, there was no discussion about genomic testing, nor was there any mention of an MRI to determine if the cancer had spread outside of the prostrate. Where I lived the two options were surgery or Photon radiation. I consulted my GP and a friend who was a doctor and neither could help on best option. I felt like you. What am I supposed to do? The decision was being left upto me.

As I was trying to decide, my wife talked to a friend who mentioned that he knew someone with good success with Proton Beam radiation therapy and was cancer free for 17 years. I checked into the research and determined it was a better option than Photon, but it was only available at limited locations, including the Mayo Clinic. I didn't want surgery so chose Proton Beam therapy treatment at the Phoenix Mayo Clinic. At Mayo I talked to other patients who had the same experience and even had doctors put them down for choosing Proton Therapy. They chose it based on their own research and not doctors' recommendations.

When I got to Mayo I learned there's a lot more to doing a thorough diagnosis then a biopsy. The first thing they did was to put me through a number of scans to rule out any progress of the cancer to my bones or other organs. Fortunately, it was contained in the prostrate. I know men who didn't have this check and later found the cancer had progressed to other organs and bones resulting in the need for severe forms of treatment.
My treatment consisted of 3 "hormone" shots over 18 months and 20 sessions of radiation. Two years later my PSA is negligible. I had not heard about the combination of hormone shots and radiation, but it is the recommended treatment for more advanced forms of the cancer. It improves your chance of survival by 20 %. There's now a form of the Antigen Deprivation Therapy that is in pill form that acts faster and the side effects recede faster. It was approved by the FDA last fall. The shot slowed down the progression of the cancer by shutting off the production of testosterone. It also shrinks the prostrate to make radiation easier and kills any stray cancer cells in your system. It's not a picnic but is necessary.

When I was doing my treatment I heard about the 5 treatment option. It's a stronger form of radiation and Mayo was studying the toxicity of the treatment. They concluded it was safe. I believe the number of treatments is based on how well they think the patient can handle different levels of radiation. At Mayo they had patients with 20 upto 48 sessions. They have a group of specialists who recommend the level of treatment. I also learned about the genomic tests after my treatment. They tested me to see if there could be a hereditary link to my cancer. There wasn't but I learned that they have isolated certain gene mutations that can cause the cancer. They have developed remedies to repair these genes to cure the cancer. The same is true for breast cancer.

I hope this isn't too much information, but this was my journey. I wish it was easier, but take Wayne's advise and get as much information as you can. There are other treatments as well that others have used and are documented on the Mayo Connect. This can be a stressful time so stick together and you can make it through it together. At the end of the treatment they have you ring a bell to signify you are cancer free. My wife and I rang it together because we both went through this together. It's like a huge weight has been lifted from your shoulders.

Best of luck.

Jump to this post

There is also a urine test called Exosome that tests for cancer markers. You might add that test to your decision list

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I was diagnosed three years ago. I chose removal since my enlarged prostate was causing me to urinate every hour or two plus we thought it was confined to prostate. After surgery we found out it had jumped to the lymph nodes. I then started hormone treatments with three month injections of Lupron. I had 44 intensive modified photon radiation treatments. I took the Lupron injections for two years. I am weak and tired, my muscles have left me, I have no libido. The worst part is that each treatment shortened my penis and shrank my testicles. My tumor markers are the PSA and testosterone levels. Both are at next to zero. So is my energy level. Cancer is gross, embarrassing, and creates humorous moments if you look for it. Stay as strong as you can, laugh as much as possible, and enjoy wearing depends for rest of your life. I still pee every hour or so.

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@ken1946

I was diagnosed three years ago. I chose removal since my enlarged prostate was causing me to urinate every hour or two plus we thought it was confined to prostate. After surgery we found out it had jumped to the lymph nodes. I then started hormone treatments with three month injections of Lupron. I had 44 intensive modified photon radiation treatments. I took the Lupron injections for two years. I am weak and tired, my muscles have left me, I have no libido. The worst part is that each treatment shortened my penis and shrank my testicles. My tumor markers are the PSA and testosterone levels. Both are at next to zero. So is my energy level. Cancer is gross, embarrassing, and creates humorous moments if you look for it. Stay as strong as you can, laugh as much as possible, and enjoy wearing depends for rest of your life. I still pee every hour or so.

Jump to this post

In reply to Irishpat. There is a lot of information in the above replies to your question and even more to sort out than you had when you initially requested help. I think the theme is that the decision is based on having solid information from reliable sources. The reliable sources are those who specialize in the type /severity/spread of the cancer you are currently dealing with and the efficacy of successful treatment approaches tha can be used. I'm a prostate patient who had my Prostate removed 10 years ago but there was some residual cancer left behind. Today, I'm now 79, I am still being treated and seemingly being managed well with only slight side effects and my health is very good, but of course there are some side effects. My oncologist, however, says I will never be cancer free. More info and treatments are available today and I might go different route today but that is behind me. My short answer to your husband's quandary is do your best to find that reliable source who has current information in dealing with your husbands symptoms and turn to them for help. There are some top cancer clinics in our country. You can find listings of those who have been identified as the best. Get an appointment with one of them and you'll be put on the proper treatment path. Mayo, MD Anderson, Cleveland and Sloan Kettering are some of the best. You have time but start the process now. I, by the way, did not use any of the above.

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When I was diagnosed for prostrate cancer 2.5 years ago I thought a PSA test and a biopsy was all that was needed. However, there are a lot more tools to help diagnose the extent of the cancer to guide treatments. The American Cancer Society has a good discussion of the latest diagnostic tools.
A friend recently had a Multivariate MRI at Mayo to determine the possible level of cancer before he had a biopsy, which was guided by the MRI. He's now waiting for his results. This option wasn't available to me when I started. Getting the best information depends on the tools available to you. As was mentioned above a good cancer center will likely have the best options.

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I urge you to read Robert Marckini's book (2nd edition): "You Can Beat Prostate Cancer …". Amazon link:
https://www.amazon.com/Beat-Prostate-Cancer-Dont-Surgery/dp/1734202203/ref=sr_1_1?dchild=1&keywords=marckini&qid=1618843397&s=books&sr=1-1

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@irishpat70, just checking in. How are you and your husband doing?

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