Need to Make a Decision

CancerKC

New to the community. 53 years old and intermediate favorable. Gleason 3 + 4. Need to make a decision but going through the same struggle as everyone else. Three main comments/questions that I would appreciate any insight or commiseration.

1. Everyone says do your research. I am finding all that does is lead to a circular thought process. The second I start leaning towards a treatment I read something that pulls the rug out and I am more lost than before.
2. I have read from many that salvage radiation is not available after an initial radiation treatment. That is not consistent with what the radiologist told me nor what I have researched yet it seems to be a consistent belief in this chat room. Can anyone elaborate?
3. Surgery vs. Brachytherapy: Cure rates seem similar and side effects appear to benefit brachy. Radiologists and surgeons both shared either option is available. I understand the psychology of surgery but it's advantage does not appear to play out in available data. Would appreciate any references I may be missing.

I understand there is no perfect option but really looking for a tie breaker. I see numerous claims that surgery provides better opportunity for a plan B but there could technically be more Plan B options with Brachy, correct?

Not fun.

fjubier

I am 52 and I was diagnosed 2 years ago with Gleason 3+4 but my cancer was localized in the left. The first year I decided to remain on active surveillance as the % of grade 4 was less than 10%. But the PSA keep going up and new MRI and new targeted Biopsy found a. New tumor with 20% of grade 4. I remember looking at all options including “Focal” Brachy. Last summer I ended up going for a focal treatment with Cryotherapy which is done by a surgeon. I just completed my MRI and my annual biopsy and it is all negative. So far I am pretty pleased with the outcome of this focal treatment since side effects are minimum (only using Cialis). Of course the con’s is that I remain on active surveillance with PSA. The focal treatment like brachy or cryo are still new but this could be an option if you are eligible (cancer on one side). Do you have cancer on both side ?

On_A_Journey

I was 52 when diagnosed, also 3 + 4, with a PSA of 7.0, and I still decided to wait a bit. My next PSA reading a few months later was 10.6 and I decided on surgery, believing that it would result in a cleaner kill of the bandit. One thing my urologist said which helped me to decide was to consider that because I was still relatively young, fit and strong, I would be able to overcome the potential side effects better. He was right, I was capable of intercourse just 6 weeks later and I was virtually 'dry' leakage wise for several years. Things have deteriorated since then, but I don't have any regrets. It is what it is. I'm still here.

Clevelandguy

Hi,

Sounds like you have done the research, time to act? It’s your body and your decision along with your doctor team to put your cancer in remission. Have you considered a second opinion with a different hospital network and doctors? As I have stated before Proton therapy can be used in the same area where radiation was used previously.

Dave 3+4

centralPA

There is LDR and HDR Brachytherapy, which are you considering?

The bad news is that it is hard to make a decision. The good news is the reason it is hard to make a decision is because all of the approaches are pretty good, with the "best" approach depending on how you weight the multiple criteria.

There is a lot of criteria, it is worth trying to list some of them. For example:

• probability of total cure
• Numbers of years suppressing the cancer (how old are you?)
• Immediate side effects
• Long term side effects
• Pain in the **** factor of pursuing the treatment (40 IMRT versus 5 SBRT versus 1 Brachytherapy versus surgery prep, etc.)
• Your willingness to tolerate uncertainty and risk
• Availability of fallback treatments (Plan B) if Plan A fails
• Where and by whom you pursue treatment (local hospital versus distant medical center)

Maybe make up a spreadsheet with the criteria on one axis and treatments on the other. Grade them against the criteria, then multiply the grades by the weight of the criteria and see what you come up with.

You'll ultimately make a gut choice, your goal now is to inform your gut as best as possible. :)

Once you make the choice, don't look back.

swl1956

CancerKC

Yes, The most stressful time of the journey was making an initial treatment selection. Sifting through all the information and disinformation drove me insane. There is no one good choice. Just the one you feel most comfortable with. Once made however, my stress level dropped considerably. Like fjubier above, I too choose a Focal procedure. I went with IRE Nanoknife. Not everyone qualifies for Focal ablation but if you are deemed a good candidate it's worth considering. The side effect profile is much less than than RP or RT. In my case the procedure was successful at eradicating the cancer in the prostate and as advertised the side effects were minimal however six months later a PSMA PET scan determined I had activity in my pelvic lymph nodes. I don't feel like I made a bad choice because recurrence and metastasis can happen no matter which treatment you chose. Since then I've endured about 9 months of ADT and 40 IMRT treatments. Not what I had hoped for, but overall I'm feeling fairly well with a very low PSA of .04 Anyhow what I'm attempting to convey is that no matter which procedure you pick it may or may not be curative, but if not there are lots of tools the professionals have to treat us. Therein lies the biggest caveat; Finding the best professionals! Not sure about Brachy but my Fox Chase radiologist tells me that they perform spot salvage sbrt routinely to pre radiated patients. She said that PSMA PET scans are changing things drastically. Before these newer image modalities they often didn't know where the bandit was hiding.

Old Salt

These are all thoughtful comments from ones that choose a certain path to start their journey.

I concur that making some sort of list (or spreadsheet) with pros and cons (based on real data, not on internet comments) is the way to go. This will take quite some effort, but may be worth it. Then you need to decide which side effects are most relevant to you. Age, of course, is a major determinant. Trust in your specialist doctors is a factor as well. This is not logical, but sometimes a certain option just 'feels' right.

As an aside, and without getting into the clinical details, I did not go with the therapy that was proposed initially (doc too busy to get an appointment to just discuss). Then I found a clinical trial with a great doctor (many published papers and very personable) but at the last moment one of the preliminary tests made me getting thrown out. I recouped and the third possible therapy at a well-known academic cancer center with an experienced radiation oncology group turned out to be the right one for me. I did read some of their papers and was impressed.

When all of that fails, patients on forums such as this often recommend a consultation with an academic center where all specialties (surgery and various radiation therapies) are available. You are (more) likely to get an unbiased recommendation. I hope that such a center is within your geographic reach.

CancerKC

Thanks for the responses. Much appreciated.

Steve1961

I was 56 and I I had 3+4 blah blah blah but then later it was an aggressive type and I I did the radiation route which messed me up messed up my bowels. It took a long time it was stressful scary, and it takes years for your PSA to go down. I regret it now five years later PSA started climbing and it was back Not cured. I was lucky enough though I had salvage surgery and now it’s gone and hopefully for good cancer does not belong in your body. Remove it if you can do not listen to all the horror stories OK even with salvage surgery I’m a little I incontinent but can still get an erection at at 64 I know guys that had the surgery done. All of them are fine. All of them are continent. All of them are still having sex and the best all of them are still cancer free some 10 years later you’re too young. Find a good surgeon get it done and don’t look back. If you do radiation just think about it. You’re putting a poison in your body to kill a poison that might not work the poison you’re putting in your body might cause cancer 10 years down the line you don’t know but if you just take that gland out it and it’s clean there you go you don’t have to wait years and years fir your psa to go down . you have radiation as a back up right now I had radiation and surgery so it does come back. I’m screwed. You can’t do radiation twice. Look up what the gold standard treatment is for prostate cancer. The number one gold standard is still surgery I’m just giving you my opinion. I did the radiation route and I regret it. I highly regret it good luck with your decision.