Newly Diagnosed: Removal vs Radiation
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.
You really don’t want to only speak to urologists. Urologist are surgeons so their answer to a prostate cancer, problem is surgery. This comment about how radiation has long-term effects has just not been justified. Surgery has many immediate effects, which as you mentioned, you don’t like.
You need to get genetic testing to find out if I could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you.
Prostatecancerpromise.org
Don’t check the box that you want to have your doctor involved or it will greatly delay the test.
The reason you want to get genetic testing is that getting prostate cancer as young as you are could be due to genetics. If you have BRCA2 for example then surgery may be the best place to start.
With a Gleason seven you have a good chance of getting treated and being cured. When it comes to radiation, you can have SBRT which only takes around five sessions, then IMRT 35+ sessions, and BRCA therapy (many ways) but you also have many other non-radiation treatments like HIFU, cryotherapy, TULSA-PRO or more (others here will recommend).
You probably want to consult an oncologist, preferably a Genito urinary oncologist who specializes in prostate cancer. They will set you up with a radiation Oncologist to discuss radiation, and other doctors to recommend other techniques.
Have you had a PSMA pet test? That is essential to find out if your cancer has spread outside the prostate. You should’ve been offered that right away.
One Gleason 7 does make you Gleason 7, more biopsy cores might fine even more 7’s.
Wish you luck in your journey, I started out as a Gleason seven and it is now 15 years later, I can’t be cured, but the medicine keeps me going
I am absolutely meeting with a couple oncologists before I make a decision - but like you said, urologists are surgeons so it shouldn't be the only recommendation I consider. It seems like no matter what path I take, I'll be in for a rough ride for a while. Sometimes it feels like the "cure" is often times worse than the disease.
Survivor 5280,
You need at least two oncologists. One radiation oncologist and one surgical oncologist. At least! Set the urologists aside for now.
There have been advances in radiation oncology that could benefit you.
I would suggest that you consult with someone who is using MIRidian Viewray. Radiation would be five treatments over two weeks.
The side effects can happen with surgery or radiation. With radiation you need smaller margins--the area beyond the tumor.
Radiation is now being done with lower dosage and protection for the vulnerable nerves so important for urinary and sexual function.
Your Decipher score suggests that ADT might advantage you. If that is so, you'll have a couple of months to talk to more oncologists.
I'm glad you found Mayo Connect. I think that this site has some of the very best, most experienced prostate cancer survivors.
I went with surgery. I also had Gleeson 7 (4+3) and I'm 60 years old.
I looked at surgery vs radiation & among other things, it seems that surgery can cause bladder incontinence but radiation could cause bladder AND bowel incontinence.
Bowel incontinence was a hard No for me.
Also, I've read that if you go for radiation & they don't get all of the cancerous cells, surgery later becomes salvage surgery.
My understanding is that the radiation may cause parts of the prostate to turn to mush & the later surgery will then involve scraping the mush from the prostate cavity.
That's probably as accurate & successful as it sounds.
I also wasn't keen on multiple days off work for numerous radiation sessions.
That's my uneducated understanding, anyway.
What do I know... I'm just sitting here peeing myself.
Good luck.
You've come to the right place for guys who understand what you're going through.
All roads lead to misery in this situation it seems. I get what you are saying, if the risk was bowel incontinence then I would be hard pressed to agree to that either. It all makes me just want to curl up into a ball honestly.
No.... neither path leads to misery. Both can lead to victory.
Treating the cancer is never a wrong choice.
Those here who have had radiation can chime in on the side effects of that.
Bladder incontinence sure does suck, but around 33 000 guys per year die from this cancer.
Having said that, it's one of the slowest-growing cancers.
Check on the Gleeson score, though.
3+4 is not the same as 4+3.
The first number is how aggressive the majority of the cancer is.
So 4+3 is *slightly* worse than 3+4
You're young enough to be eligible for surgery & hopefully caught early enough for a good result.
We'll just wait for the radiation guys to check in.
I did five sessions of SBRT radiation and had rectal spacer gel inserted. It pushes the rectum away from the prostate to protect it. I'm now fully four months past radiation. I never had any bowel issues during or since my treatment. During radiation and for about a month afterward, I had weak urinary flow, which Flowmax (a drug) fixed, but that has stopped. I also had tiredness and had to nap in the afternoon for an hour. I took six weeks off work because I had accumulated hundreds of hours of sick leave, but could have worked if I didn't have the time off.
Because I was a Gleason 4+3, I had to have six months of ADT. That's been rough. My effects were more mental than physical but it did put me into a severe depression and mood swings, loss of appetite, and loss of muscle mass. I continued to exercise so I didn't gain weight like many do. When they say six months it really means 9-12 because it takes time for testosterone to return. I take Orgovyx, which is a daily pill, which is supposed to have a much faster recovery period than the injections. We'll see soon enough as this is my last month.
I have sexual function on ADT if I use 100 mg Viagra but four months in lost the ability to have orgasms. I was told this would return a few months after stopping ADT. Again we'll see soon enough. Guys in my support group who had surgery have ED after four months but can have orgasms. So pick your poison I guess.
While it's true that surgery after radiation is rarely done, it's also not a likely scenario. Prostate radiation is pretty thorough.
The main advantage of radiation is that you can continue your normal life for the most part, with just some tiredness and urinary issues. I exercised, walked my dog, etc. I had no urinary incontinence at all.
Surgery gives the advantage of immediate pathology.
My best piece of advice is go to a recognized "cancer center of excellence" if that's an option available to you. Google it and you'll easily find one. I did (Mayo Phoenix) and I was very happy I did. I felt the advice and care was outstanding. Regardless of which treatment you choose, you've got better odds of a favorable outcome at a recognized cancer center of excellence. Also, I'd recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer, Paperback – October 3, 2023. It's on Amazon and it's the best $20 I ever spent. It really helped educate me on some key points in my decision making. In the end my wife and I felt at 70 with my family history and my numbers that surgery was the best option for me and that's what I did in late June 2024 at Mayo Phoenix. I'm essentially 100% continent, but ED is an issue for me and at 4 months it's too early to tell how that will turn out. Other than the ED, everything else is pretty much back to normal and has been for a while. The pathology report on the prostate revealed both Cribiform and IDC (either is bad and together it's worst), so I'm really glad I got the surgery. But don't misunderstand what I'm saying; I'm not a medical professional and I have no idea which treatment path is best for you. Rather, I'm just sharing that my surgery at a cancer center of excellence has exceeded my expectations so far. Best wishes to you and yours.
Mine wasn't as aggressive. But my situation was similar. I am 58 and I had the same concerns.
I had mine removed... after doing research and talking with the urologist at Mayo I decided it was the best route for me. 1) Radiation can have same side effects, just takes longer. 2) My age there is a chance to have a reoccurrence, even with the prostate out. If that happens, I have radiation as a back-up plan. If you do radiation first and it comes back your options are limited.
I have spoken with several people who have done both, either removal or radiation. Several people have had reoccurrence. In fact, a former colleague is headed to the Cleveland Clinic because he had a reoccurrence after radiation 5 years ago. They found cancer both in the prostate and lymph node.
I have had some side effects... but not as bad as others on here. Minor leakage. Surgery was October 3rd... I have had five incidence of leakage. Maybe a tablespoon each time. I had an erection even when I still had the catheter in. Hurt like hell... but was a positive sign. My erection can get to about 80%. But does take a little work. First orgasm wasn't anything to write home about. The second one was better.... so I have hope they will continue to get better.
My best advice... go to a center of excellence. Mayo or something like that. You want a place that does volume and has a great reputation.
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.