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
Dr. Ryan says: cancer is a disease that fights for its life.
Blood work before radiation and elevated liver enzymes
First PSA result after treatment 
Update: results of a recent PSMA PETscan
If cancer has spread beyond the prostate, is RP best first treatment option?
Right treatment path? 
