Treatment Decision - Radical Prostatectomy versus Radiation Therapy
Recently diagnosed and now stuck in that frustrating "no man's land" between surgery and radiation therapy. Diagnosed after an increase in my PSA to 5.2 and concerns about family history of disease (father). Particulars are as follow: MRI showed 2 lesions, PI-RADS 5, with no evidence of seminal or lymph node involvement. Follow-up perneaural biopsy showed Gleason - 3+4 from biopsy; Biopsy showed positive in 9 out of 22 cores with perineural invasion present in one biopsy sample. Surgeon indicated that I was not a candidate for AS and recommended surgery (robotic). The surgery, however, would be somewhat challenging due to the location of one of the tumors near the apex of the prostate and based upon this he gave me a clinical staging of cT3a. This would require a wide dissection to maximize the probability of negative margins which might have a negative impact on the ureal sphincter. The imaging was inconclusive for extraprostatic extension, but suggest there might be local extension. Surgery would probably include a partial nerve dissection with nerve sparing on one side.
Due to these complications, the surgeon suggested that I also consult with a radiation oncologist. Radiation oncologist confirmed the diagnosis and also felt that the EPE would be rated at 1 - 2. No surprise, the oncologist recommended radiotherapy over surgery. This would be IMRT or SBRT with or without ADT (informed by Decipher test results). A sample of my biopsy tissue was sent out for a Decipher test to assess the genetic aggressiveness of the cancer. This would also inform my eligibility to participate in a clinical trial relating to RT with or without ADT.
So there I am...learned much more about PC than I ever thought I would have to. My doctors are at Mayo Clinic - Phoenix and they really seem to know their stuff. I am a retired Engineer with a background in statistics so I have reviewed at least 15 study results at this time. The survivability is relatively easy to quantify. The difficult part is the quality of life impact. I am 66, in good health (I cycle more than 100 miles/week) so discussions that sort of put an "end date" to your survivability are a bit unnerving. The difficult part of this process is the "joint decision making" with your providers when you are stuck in the middle between two choices with very similar statistical outcomes, but potential divergent and uncertain QOL impacts.
My initial thought going into this was that surgery would be my path. The idea of removing the "source" was appealing. The challenges with my specific presentation, however, gave me second thoughts and after exploring the RT options, I began to rethink the surgery approach. I am stuck in that state and looking for any insight that might help me move forward...
Thanks!!!!
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
Here's a different way to think of it. My radiation oncologist says that the purpose of Decipher is actually to avoid overtreating — in the past, they would have treated all cancers as if they were more serious, just to be safe, but Decipher lets them know when a patient doesn't need to go through all that.
I know it still comes out to the same, but maybe think of your Decipher score as confirmation that you really do need this treatment, and you're not putting yourself through it for nothing. It might save a lot of second-guessing if the side-effects get a bit rough along the way.
Best of luck!
Well, from what you were saying before, this high decipher score will result in you having to be on ADT after having radiation. Might make sense to do it now, that would stop your cancer from spreading and growing and usually shrinks it a little before radiation. Usually the RO wants that before radiation. Was it mentioned?
Did you do something about genetic testing, or ask the doctor about it? That would also be a factor in what you should do surgery vs radiation.
Just realize that there are a lot of things that can be done in your future. Prostate cancer is not usually a death sentence. There are many drugs and treatments that you can take that stop it from growing and can give you a long life. My Gleason was 3+4 after biopsy, but I had surgery and they found it was actually 4+3, that was 14 years ago , and two years ago, I found out through the genetic test that I have BRCA2 which prevents the DNA from making corrections when there are errors, that’s what causes my cancer to keep coming back, but I’m still around after almost 15 years. Gleason number changes are not unusual your 3+4 may not be a 3+4, I know a lot of people that found out higher numbers after prostate surgery.
There is a long future ahead for you, don’t think you only have a short time left. Many of us worried about that and are around a long time after diagnosis.
Here you go engineer..
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
And, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Many of them are more dangerous than the cancer.
Can you explain what the circles mean a little bit more? The chart goes up to 120, so it's obviously not showing a percentage. Thanks
It's great that this site exists, but as I've mentioned before, use with extreme caution, because it can give you a false sense of confidence.
Combining and comparing data from multiple studies taken at different times with different participants and methodologies massively reduces the accuracy and precision, and it also can't account for other personal factors that your care team would take into accout.
The best way to use it is not as a way to decide, but as a source of informed questions to ask your care team. And pay attention only to large differences; smaller ones are likely just statistical noise.
It also looks like
https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/
doesn't include the ARSI "-lutamides" like Apalutamide (Erleada), Enzalutamide (Xtandi), or Darolutamide (Nubeqa) among the treatment options. They're probably the biggest advance in recent years for keeping those of us with advanced or aggressive prostate cancer alive.
If the site just bundles them in with "ADT", then the results wouldn't be too useful, because studies like TITAN have shown a huge overall survival difference between ADT alone and ADT + ARSI.
Just as an aside to all bike riders: various companies make seats with NO horn and the part that contacts your butt is much narrower front to back.
It places NO pressure on the perineum and your body is supported by your ‘sit bones’ and glutes. Worked wonders for me! Just be sure you get whatever adapter/coupling is necessary for the post on your particular cycle.
Probably get them on Amazon
Thanks, will certainly do.
I was doing 25 miles on my route and was trying not to irritate the prostate. I will look into the shorts for bicycling.
I think everyone's experience, condition and situation is different so I strongly urge everyone to find experts they trust and ask these questions of them. But for your reference on #1 I was told this by 3 urologists including a surgeon and radiation specialist. My brother experienced this and will wear two drainage bags for the rest of his life. On #2 I was told this by 3 urologists also and while the "scraping" terminology may not be common this is a very common procedure that must be done before radiation according these three highly regarded doctors. Regarding #3 I cannot speak from experience but I was told by two radiation specialists at different locations that a surgeon be required . . . however it is outpatient and I understand you not fully anesthetized. Every doctor has described this as surgery which is why I referred to as minor surgery.
I appreciate your response in that everyone should get as much information from people actually going through the experience as possible. My biggest concern with your response that because you have not heard of healing well you assume it is not a critical issue in making a decision on treatment. Not attributing blame as my first 3 doctors did not mention it when discussing treatment options. My suggestion is that you investigate further and ask experts the question and you will find that this is a critical factor everyone should consider in making their decision . . . not saying radiation treatment is not the right solution for yourself and many but it should be part of an informed decision. I hope you take my response in the positive manner intended. I spent many weeks bedside with my brother in hospitals of the last 10 years because of this issue so it gets me a bit wound up.
@jeffmarc, all,
I should clarify the healing issue I am referring to is not healing from radiation treatment so fortunately it has not been an issue for you and probably/hopefully never will. The issue is that the tissues ability heal is greatly degraded when exposed to strong radiation treatments. So the concern is that if you have radiation treatment on your prostate and later have to cut into it may not heal properly. Of the degree tissue degradation will be a function of the treatment type and strength. But it should be a factor of consideration. In my case I could have chosen radiation but as stated I would need to get any surgery and healing in advance of the radiation to avoid high risk of serious complications as serious as ending up with a colostomy bag. Hope this clarification is helpful.