Choose between robotic surgery and proton therapy.

Posted by popkovas @popkovas, Oct 2, 2023

Hello!
I am looking for help for my relative who has prostate cancer (3+4), not spread. He has been given choice between surgery and proton therapy. Would like to hear stories of the patients or some opinions. He is afraid of the surgery side effects, but on the other hand not sure about effectiveness of proton therapy.
Thanks

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I did not have proton therapy but elected to do HDR Brachytherapy at Mayo /Rochester which is not offered in many of the clinics. I chose this because my research showed it has one of the lowest rates of recurrence for low to intermediate risk prostate cancer and I could complete the treatment with just 2 treatments. Proton treatment at Mayo is down to 5 treatments over 2 weeks. Comments on this forum that I have seen from those that had proton therapy are very positive with the recovery time and side effects being minimal compared to surgery. You will find many comments regarding incontience following surgery on this forum, this does not occur with radiation. Radiation therapy including proton may or maynot cause a need for a short term course of Flomax.

All urologists will say that following radiation you cannot have surgery. I have yet to see any posts in this forum regarding a low or intermediate risk prostate cancer that had a recurrence with radiation. They are probably here but I have not seen them. I have seen a number of comments from individuals who had a recurrence following surgery and were treated with radiation and hormone treatments. I am assuming that this would be the same for those who had a recurrence following radiation. My question is if the treatment following a recurrence is the same reagardless if you had radiation or surgery, why is not having the option of surgery following radiation an issue?

One of the surgeons that I talked with encouraged surgery so a full pathology report could be done on the gland to determine the risk of recurrence. I had genetic testing done which gave me the same information.

I

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@kenhorse

Continence is slowly getting better but still no life on the other side of things.....

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it was nerve sparing surgery ?

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@popkovas

it was nerve sparing surgery ?

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Partially, yes. My urologist said a 50/50 chance of recovery.

As I am 69, my attitude is still better alive than... well you know...

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From my reading and the post from my fellow cancer sufferers, I believe that with a gleason score7 or more, cancer will most probably return, no matter what treatment you got. For a guy under 70, I think that an aggressive treatment, at an excellent facility, subject to the doctors recommendations, is the best strategy for prolonging a quality life. It is very important to be frequently tested, after treatment, to promptly discover when the cancer returns. Good luck to you all!

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After my diagnosis in November 2023, we looked into both robotic surgery and radiation. My urologist only suggested surgery but I needed more information and we went to work, We consulted with multiple highly regarded cancer centers and were given quite a bit of information, but also confusing information. Based on our research, my wife (a nurse) and I took surgery out of the equation for a few reasons. Long-term data suggested similar long-term outcomes and we focused on "least invasive" and "least chance for collateral damage". We learned about the differences between Photon and Proton radiation. We were given some confusing treatment plans: start with ADT, or not; ADT after radiation, or not, and asked, what would you like to do? This was both confusing and actually extremely frustrating. At the last center, a treatment plan was proposed and we directly asked the doctor "what would you do if this was your father" and received a direct answer. HE firmly stated this is the treatment he would suggest for his dad and for himself! We decided then that this was the cancer center where I would receive treatment.
I chose to get Proton radiation based on what we learned about how it is more focused and does not radiate extraneous areas of the body (it stops at the target point). After my 29 treatments, I started taking Orgovyx, which was no fun, but necessary per my trusted physician. My initial Gleason scores were 4+3 and 3+4, contained to my prostate. My most recent PSA was 0.02 and testosterone < 12 which is what they need to see - I so miss the testosterone!

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@kjacko

My situation is very similar to yours. After consulting with two different urologists, I will be having the surgery next month. They both agreed that this was the best option. To avoid repeating, the responses you have above pretty much summarize mine as well. One of my relatives had his removed 15 years ago and has had no problems at all. When I talked to him he recommended I get it removed. He said the possibility of wearing a diaper for years if that happens is better than dying. Hard to argue that point. My doctor said I’ll be good as new in 6-8 weeks. 🤞🙏The most important thing is to have a really good feeling about the doctor you choose. Best of luck.

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Most people seem to recover from incontinence and have problems again around 80. I assume exercising, kiegels, and sit-ups will delay further inton 80s

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@pieperfarm

Most people seem to recover from incontinence and have problems again around 80. I assume exercising, kiegels, and sit-ups will delay further inton 80s

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My urologist emphasizes Kegel exercises. I told him I do lots of sit ups and he said they didn’t help. You have to focus on other muscles. I practice Kegel everyday until my November surgery. I see and feel the difference doing those compared to my sit-ups. Hope this helps.

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@popkovas

Hello!
How was continence and erection after the surgery and now?

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As with most things discussed here, "your results may vary," but I found that there are too little success stories on here and, for months, I found it discouraging. At 66 yrs, my RALP was 3 weeks ago yesterday. I continue to do the work on both continence (I found Vanita Gaglani's book, Life After Prostatectomy, very helpful with continence issues) and ED (viagra, as prescribed by my surgeon/urologist, has helped to restore blood flow). I'm seeing nice progress only 3 weeks in. I experience only minor leakage from time to time - to the point that I'm comfortable going out without even a pad. Erections are back too but still a work in progress in terms of strength.

From the perspective of the other side of a RALP, I'm so very glad I chose the route I did and I admit my continence and ED concerns were overblown. I've no concerns that both will be just fine in a few more weeks.

Stay positive, work diligently, and make it happen. Good luck to you, whatever you choose to do.

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I’m a 71 year old whom is a BIG PROPONENT of Proton Radiation. Had Gleason 8 aggressive cancer and after researching everything chose proton at UFHTPI in JAX. Just finished 40 treatments - great experience and no side effects from the radiation. PSA went from 11 to 0.25 during the 8 weeks of treatments. I’m still on Orgovyx (ADT) which has been VERY tolerable.
Very glad I chose Proton.
Good luck on your relatives Choice.

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@michael219

After my diagnosis in November 2023, we looked into both robotic surgery and radiation. My urologist only suggested surgery but I needed more information and we went to work, We consulted with multiple highly regarded cancer centers and were given quite a bit of information, but also confusing information. Based on our research, my wife (a nurse) and I took surgery out of the equation for a few reasons. Long-term data suggested similar long-term outcomes and we focused on "least invasive" and "least chance for collateral damage". We learned about the differences between Photon and Proton radiation. We were given some confusing treatment plans: start with ADT, or not; ADT after radiation, or not, and asked, what would you like to do? This was both confusing and actually extremely frustrating. At the last center, a treatment plan was proposed and we directly asked the doctor "what would you do if this was your father" and received a direct answer. HE firmly stated this is the treatment he would suggest for his dad and for himself! We decided then that this was the cancer center where I would receive treatment.
I chose to get Proton radiation based on what we learned about how it is more focused and does not radiate extraneous areas of the body (it stops at the target point). After my 29 treatments, I started taking Orgovyx, which was no fun, but necessary per my trusted physician. My initial Gleason scores were 4+3 and 3+4, contained to my prostate. My most recent PSA was 0.02 and testosterone < 12 which is what they need to see - I so miss the testosterone!

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I too like the idea of Proton treatment and wondering if you could tell me where you ended up doing the procedure? Also about how old were you when you had treatment? What did the Orgovyx do to you and how long will you take that? I didn't know they varied from 40 treatments unless you do 5 treatments over 2 weeks! Feel free to private message me if that is preferred. I hope all is well now!

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