Newly Diagnosed: Removal vs Radiation

Posted by survivor5280 @survivor5280, Oct 28 5:11pm

Hello, I suppose I'm exactly sure where to start this. I'm already a cancer survivor from 9 years ago, only to find out I now have prostate cancer (no metastasis detected, this is new).

My PSA's were off the chart so the biopsy was next, which revealed low Gleason scores in all but one core, which was a 7 (I would have to check if it was 3+4 or 4+3, but it's still 7). The core was sent for a Decipher which came back as high risk 0.68 out of 1.0.

Prior to getting the Decipher results (this morning) my regular urologist recommended removal, as I'm only 54 years old and he felt it was a good fit as I am young enough to recover from it and said that radiation can cause long term effects that I might not see until I'm much older.

In this same topic, my second urologist (long story, I have two at the moment) reviewed with me the Decipher score + my Gleason and also recommended removal.

Of course this terrifies me. The process itself, another robotic removal just like my kidney, isn't nearly as horrifying to me as the side effects of losing your prostate (ED, incontinence, dry orgasms, etc).

The consensus is for a prostatectomy, but I'm curious to hear others experience in this regard and if they felt they chose the right path given the circumstances. I know that there's no way to know exactly how aggressive the cancer is until the whole thing comes out, but I want to believe there are intermediary things that can be done to see if they help first - but I was told that generally once you do the radiation then prostatectomies are generally off the table.

I was hoping to find a support group locally where I could talk to others, but sadly in an area even as large as mine, it's very challenging to find one (for some reason).

Thank you.

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

Tracy | @fwintracy | Oct 30 8:18pm

In reply to @survivor5280 "Thank you for your responses. @bdc1677 and @retireditguy your recommendation for a center of excellence is..." + (show)

@survivor5280

Thank you for your responses. @bdc1677 and @retireditguy your recommendation for a center of excellence is a great one and I will absolutely explore that. I'm encouraged that a man near my age has not had as many complications as I'm very worried about this. I'm really losing my mind on this, between a possible forever reduction in my quality of life as well as a burden to my wife is so much for me to think about, and I finally broke and fell apart tonight - I am lucky that my wife is traveling for work because, well I'm lucky she wasn't here.

Having survived cancer before I don't fear the cancer nor the surgery, I fear the life afterwards. Losing my kidney forced some changes in my life, but none reduced my quality of life at all. This reduces the quality of life. Perhaps I can escape the ED or incontinence but it seems to be asking a lot to dodge two bullets at the same time, add to that the dry and/or painful orgasms and I don't know, I feel like I'm losing an awful lot that makes me a man.

After tonight I am going to try to see a psychologist that specializes in cancer patients, perhaps to help me find where I can accept this, I seem to be struggling. Of course this is day 1 (or day 31 if the original biopsy results count). In one day I went from active surveillance to treatment and it's a lot.

Did you guys go through these kinds of emotions? I assume much of it is fairly normal to feel, this reaction is far worse than the first time and I would think it's easier, but again the quality of life and burden issues were not a factor before.

UPDATE AFTER POSTING
Apparently there is a very good center of excellence cancer center right in my city. Has anyone had success with University of Colorado Anschutz? It also happens to be where my Urologist is, so perhaps this is a good sign that I'm getting the best advice one can get? Of course I need to speak to a couple oncologists now, this is firmly in their realm of expertise.

Jump to this post

My experience with the emotions, mind racing off, etc., are similar to yours. IMO, if you don’t feel these things you really aren’t paying attention. Don’t worry about that but I applaud your reaching out for counseling - never a bad thing.

I was 66 when I had my prostatectomy last Sept. I followed all the docs and surgeon’s recs. I read Patrick Walsh’s and Vanita Gaglani’s books (hers is on “life after prostatectomy”). Both were very helpful to me.

My suggestion is to feel the emotions then move on to your decision making. Once you make your decision about radiation vs surgery, go all in. Don’t look back. Pros and cons to each and nothing is absolute - your results may vary - and all that. My friend here, Michael, advised me when I expressed doubts to go all in with positive thinking and not to look back. Best advice and just what I needed to hear.

One year later, I’m continent with the occasional bout of “stress incontinence” - no bid deal my wife advises 😁. ED was slow (for my preferences) but no biggie. Dry orgasms are the new thing and I sure don’t mind. Having the belief (prayer) that I got the cancer out is worth it to me anyway.

Best of luck to you - whatever you decide is best for you. Keep coming back here for there are amazing souls reading your posts.

chamblee54 | @chamblee54 | Oct 31 10:04am

I can only tell you what I did. After researching and getting 3 opinions, (1 was surgeon , 1 was RO, 1 was Oncologist ) I went with radiation.
My main concern was incontinence and ED. Seemed to me I had a bit better chance with side effects if I stayed away from surgery. I felt surgery was very invasive and was willing to risk radiation.
I’m 2 months post radiation and side effects are minimal. Occasional bowel urgency. I’m only 5 weeks post ADT and so it will be months before I get that out of my system.
It’s a difficult time trying to navigate the decision process. I got three opinions and was glad I did.
I also spent immeasurable time reading and watching podcasts by experienced doctors in the know.
One resource I favored was Prostate Cancer Research Institute. They have some very good videos that I accessed thru YouTube.
Once I chose a treatment, my anxiety went way down as I felt I had done a good job of getting informed. Best wishes on your journey.

kjacko | @kjacko | Nov 1 8:45am

I chose to have a prostectomy without even thinking about radiation. I was told if radiation didn’t work, removal would be very difficult. BTW, I was 71 with two cores of cancer, one at 3+4. Removal went well. However, my pathology report showed cancer was at 4+5 and a high decipher score. Before and after the surgery I did Kegel exercises religiously. I had ZERO incontinence issues. I attribute that to the Kegels and a very skilled surgeon. So far, I have had 4 PSA tests come back at < 0.01. Hoping for more of the same. IMO, I would really consider the pathology results as something to consider when making your choice. Best wishes! PS. Next week will be one year since my surgery.