No more active surveillance for me

[Adf2529]

65 yr, good physical condition. After 10 years BPH symptoms and a steadily rising PSA, I was diagnosed at Johns Hopkins with low volume G3+3 in 2017. Single core. Recommendation: active surveillance. Re-biopsied in late 2018 at UCLA, G3+4, slightly higher volume but still, single core. PSA around 5. Stayed on active surveillance while obtaining TWO genomic tests. One said low/intermediate risk. The other, high risk. My two MRI’s, btw, did not clearly show a lesion. I had an (expensive) GA 68 PSMA test that turned up false positives for mets.

At the beginning of 2019, I decided that I would get some form of treatment. I visited and talked to many docs; RO’s and urologic surgeons. All highly competent and at the top of their fields. I looked at ALL the options. I might have waited for TOOKAD or Tulsa Pro (both non-radiation alternatives to surgery) but a 2015 UroLift implant (for BPH symptoms) was a cause for anxiety. If I had higher volume prostate ca, I would have considered surgery.

I also considered focal treatment which was recommended by a couple of docs. But the area of my prostate ca and the one genomic test result that I was at high risk for metastasis sent me to whole gland therapy.

I spent quite a long time going back and forth between HDR brachytherapy and finally settled on the 5 course SBRT at UCLA with Dr. Chris King. By this point, my PSA had risen to 7 from 6, in the course of a year.

I’ve learned a lot about prostate ca treatment within radiation and urology departments of major hospitals. I’ve learned, also, about the anxiety of active surveillance. As a 40% volume, single core G 3+4, I was reluctant to continue on AS — especially since major institutions have only reluctantly shifted from the position that G 3+4 is the signal for definitive treatment. The genomics tests are still new, and l had to pay a lot out of pocket because the insurance companies are balking. I had some docs wave their hands and say, don’t worry: the tests aren’t convincing. But the idea that I was at “high risk” was a heavy burden within active surveillance.

[Tall_Allen]

I hope you'll be as happy with SBRT and Chris King as I have been. Next month will be 10 years.

[Sunfire in reply to Tall_Allen]

What was your pathology prior to SBRT? Congrats on 10 yrs clean

[Tall_Allen in reply to Sunfire]

Gleason 3+3 in 9/17 cores, T2a, PSA=7.3 and climbing

[Sunfire in reply to Tall_Allen]

As I understand SBRT monotherapy still show good results for 3+4 of 2 cores and 3+3 of 1 core? PSA 6.60 and climbing

[Tall_Allen in reply to Sunfire]

Yes, it does very well among intermediate risk patients.

pcnrv.blogspot.com/2019/04/...

[Sunfire in reply to Tall_Allen]

Thank you!

[Adf2529 in reply to Tall_Allen]

Thanks for your contributions on this blog and links to technical data. Much appreciated.

[AlanMeyer Moderator]

As to the question of whether to continue active surveillance or to get treatment, I think that AS is still a very reasonable option, but I can understand your desire to treat it and be done with it.

However one question that comes to my mind is, what effect will the SBRT treatment have on your BPH symptoms? Surgery would, I think, end the BPH as well as the cancer problem. Will radiation do that? Have you discussed it with the radiation oncologist?

Best of luck.

Alan

[Adf2529 in reply to AlanMeyer]

Good question. Yes, surgery would end the BHP as well as the cancer problem. For me, the greater risk — after carefully evaluating SBRT side effects through available data — was on the risk of erectile dysfunction through surgery. I can live with BHP symptoms (nighttime urination) if they don’t get worse, and I feel reasonably confident on that. With SBRT I dodge the uncertainty which goes with surgery which can last 12 to 18 months. When one of the top urologic surgeons in the nation, who has done thousands of RP’s, told me that his career goal was to reduce the number of surgeries he performs by 40%: that made a very big impression on me.

[Adf2529 in reply to AlanMeyer]

If my PSA had not continued rising, and if I had not had one genomics test that was concerning, I would have considered staying on AS. I believe that the non-radiation interventions on the near-term horizon in the US, whether TOOKAD or Tulsa Pro, are very promising for treating cancers like mine. The question I asked myself, how long do I wait? And if I wait too long, do I miss the window where the cancer I have is curable? These questions started to occupy too much emotional bandwidth. One of my docs told me in June, don’t worry. Go enjoy yourself. Another doc told me, if you know you are going to get treated, why wait?

[AlanMeyer Moderator in reply to Adf2529]

Of course "Don't worry" is easy for the doctor to say. I remember telling one of my friends that I was being treated for prostate cancer and he said, "That's not serious. Most people get an operation and they're cured. Right?"

The second recommendation, "if you know you are going to get treated, why wait?" has a lot of reason behind it. If treatment is very likely to be required, why not do it when the odds of success are at their highest?

Whatever you do, you're going to have second thoughts. Should I have done this? Would I have done better to do that? Try not to go down that road. You've done much more research than most patients. You've consulted with top doctors and chosen an excellent one for your treatment. You've made a reasoned choice among a very complicated set of alternatives where many of the key determinants of success are simply unknowable. It's the best you could do and, if things don't go exactly as you hoped, you should at least understand that they might very well not have gone as you hoped with any of the other alternatives either.

I wish you the best of luck and a healthy future.

Alan

[Adf2529 in reply to AlanMeyer]

Thank you, Alan. That is exactly how I see things. The advantage of AS is that it gives individuals the chance to understand choices and options. I wanted to be able to tell myself ( and my family) that if things didn’t turn out well, that I had at least explored every avenue based on best available science and the advice of highly skilled medical professionals. To me, anyhow, active surveillance did not mean sitting back for a couple of years and waiting for a physician to tell me what to do. The best physicians, and I met a few of them, will both admit their occupational bias (or at least freely offer options) and also say to the patient, this is not an easy decision AND it is your decision. So prostate ca is complicated, and for the patient complicated too because hundreds of millions, billions, are being thrown at shape shifting problem.

[dentaltwin in reply to AlanMeyer]

"It's difficult to make predictions, especially about the future."

--attributed to Niels Bohr

[TFBUNDY]

No one ever mentions hyperthermia. Mostly only done in private clinics in Germany. The principal is to warm up the prostate to 42.5 degrees C for 2 hours and the Cancer cells die. They do this twice in 5 days, some use vitamin C infusions at the same time. The machine to do the warming is by a Hungarian company called (I think) Oncotherm. I think it looks a great option for lowish risk disease. I think a total of 15000 USD should cover everything. I would have jumped at the chance for this but settled for HIFU as being freely available in the UK. Hyperthermia can be done any number of times Anyone experienced this?