I posted 3 days ago about a large lymph node which was forgotten during surgery.
I wanted to write again after I saw the surgeon today for my post surgery appointment. To put everything in perspective, I was diagnosed in may of prostate cancer with PSA 20, Gleason 8 and one big lymph node lighten on Colhin scan.
I saw 3 urologists before making a decision. The first one was very evasive and asking me what I prefer between RT or RP mainly based on side effects I could expect with long term adjuvant ADT. The second one was a surgeon and offered me a very agressive approach with RP followed by RT then 3 years ADT giving me a 5% chance of complete cure. The last one offered me straight away to participate in a clinical trial called Proteus (phase 3) . The trial is checking the effect of apalutamide associated to Eligard as 6 months neo adjuvant treatment before surgery and then another 6 months. He explained to me that if I was in the apalutamide arm, I had a 20% chance of complete cure. At the beginning I was quite hesitant to jump in a clinical trial since I had just been diagnosed. The way this doctor was talking to me and how comfortable he was making me feel , convinced me to give it a try.
I followed carefully the first 6 months protocol. I had 2 shots of Eligard and was given apalutamide (or placebo tablets) every day. I got my surgery on the 23rd of December, enjoyed Christmas Eve alone in the hospital due to COVID and went home on the 25th. One week later, I was sent for ct scan and bone scan. The bone scan was clear but the scan showed that the only lymph node that lit at the initial exams was still here even though it had shrunk a lot. I was a bit shocked to find out that it was not removed during surgery. The surgeon after surgery asked me to do a PSA one month after surgery and to come to see him for the post surgery follow up and results. First of all I did the PSA 2 days ago and the result was shocking in a good way. It came back as inferior to 0,006! I didn’t even know you could get that kind of number so I went seeing the surgeon thinking that it was a mistake and he would ask me to do another one. When I entered his office, the lab hadn’t sent him the result so he asked me if I had done a PSA. When I told him the number and how much I was surprised, he told me it matched the results he had which was that there were absolutely no trace of cancer in the prostate he removed , and the 8 lymph nodes they checked. No trace of cancer anywhere! I didn’t quite understand why he couldn’t get out the big lymph node I was worried about but he told me that since there was no cancer left anywhere , there was a very low chance of still having cancer in this lymph node. I will see him in 6 months with another PSA and another scan. He definitely confirmed that with that kind of result, I was in the apalutamide arm and the prognosis was definitely better than the first time I saw him.
Sorry to be that long, but I thought my story could be helpful to explain that you really have to see several doctors before you make a decision and that the contact I had with this doctor was very important in my decision. I know this thing will probably come back one day or another but for now, I am a bit more confident about the near future. 6 more months of apalutamide, one more shot of Eligard and I’ll try to stick to my new healthy living style.
And once again thanks to tall Allen for his advices and his blog
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Johnko
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I think you should still consider salvage radiation of your pelvic LNs at some point, perhaps when PSA starts to become detectable (hopefully a long time from now). A recent study at Mayo showed the benefit of area-wide irradiation over singly getting rid of them.
Rather than reprint our response, let me state that both the article and our response are irrelevant now that we have much better data from 3 randomized clinical trials:
Don't get carried away by your success story Dr. Ryan says: cancer is a disease that fights for its life.
The patients in the study you mentioned did not have ADT while you get ADT plus Apalutamide. Also, the Gleason score at diagnosis is an important prognostic factor for biochemical recurrence. The authors of the study write: "....postoperative prostate specific antigen at a 0.01 ng/ml cutoff, pathological stage and Gleason score, and surgical margins were significant independent predictors of biochemical recurrence risk." These authors found that the PSA value is not the only predictor.
I am in a similar study (not proteus but a similar NIH sponsored study). 6 months intensive neoadjuvant adt (4 medicines) then surgery. Psa of 9.3, Gleason 9 (5+4). 3 of 12 core positive w 20% each. Nothing outside prostate by ct and bone scan. Prostatectomy in June 2020 (8 months ago). Results: complete response - eg no cancer found in prostate or lymph’s on disection. I second the idea that this approach (proteus or NIH) is worth looking into though it’s a trial, not soc, and only helps a subset of people. My thoughts on how to decide below:
1. In my case, I had high risk but low volume cancer (about 5% of the prostate). Maybe low volume is an indication for effectiveness
2. 6 months of intensive adt really takes it out of you. And recovery after surgery was slower (another 6 months of low energy). In my case I am retired so it was ok but if you are working actively this might be difficult
3. I was in good shape and relatively young (62). If I was older or in poor shape I might have opted for radiation. Surgery is invasive.
4. Complete response is good but doesn’t mean cure. Time will tell. These studies are too new to have much long term results
So they remove your prostate just for the trial.I guess they could have done a scan before RT and let you with your prostate and no SE like incontinene and impotense, and DRY orgasms.
But that new med seems to be GREAT.
Good luck.
73 y.o. with Lymphoma LNH and many Acute Chronic Diseases. That gave me a Severe Physical Limitation. 2 walks of 0.75 km with a walker, then my Pulmonary Emphesyma Gold Grade 3 kick in and I have to rest and catch my breath.
1994 Had a work accident followed by Discoidectomy L4-L5 and Permanent Acute Lumbalgy, on Fentanyl 87 mcg/hr patches and recently on CBD and THC.
My PSA went from 6.76µg/L to 22.4µg/L in 6 weeks.
Prostate went from 24.7cc to 45.86cc.
I had 6 cores out of 12 positive on the right side at 85% G4, then on a Special pre-RT Scan they found multiple tumors on both sides.
I was in the Ufavorable Intermediate Risk group with a G(4+3=7) Grade 3.
I got and injection of Eligard 45mg/24weeks on April 4th 2020 that was screw-up.
So I have been on Lupron Depot 22.5mg/12weeks X 2 from May 2020 to Nov 2020 and on
VMAT-RT 3Gy X 20Fx in June 2020 and my
PSA = 0.01µg/L and my
Testosterone = 0.3nmol/L or 0.086526µg/L or 86.526ng/L or 8.6526 ng/dL
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Dr. Ryan says: cancer is a disease that fights for its life.
Entering Clinical Trials
Immunotherapy Clinical Trial or Olaparib (Lynparza)?
Getting ready for clinical trial
Estradiol Clinical Trial in UK?
Off clinical trial, on to radiation and chemo
