I read a lot on here about other experiences, so wanted to post on update on my situation. Gleason 9, low PSA, already had TURP, spread to local lymph nodes in left side of pelvis. After many opinions, have decided on a treatment plan and will be treated by a team at Memorial Sloan Kettering. The plan is not SOC. I will start on Firmagon + Zytiga for 6 months. After 6 months I will have surgery to remove the prostate and lymph nodes. Hormone therapy will stop, and I will have another PSMA scan. Results of that scan will determine if radiation is required (after I fully heal from surgery). I was told Brachytherapy was not an option due to previous TURP. I have my first Firmagon injection tomorrow - any tips to prepare? My goal over the next 6 months is to try and exercise as much as possible, eat a healthy diet and Kegel, Kegel, Kegel!
Gleason 9 - spread to lymph nodes, up... - Advanced Prostate...
Gleason 9 - spread to lymph nodes, update on treatment plan.
It sounds like you have a great team and plan. It sounds like you have learned a great deal in a short time. Best luck
The first firmagon injection are two injections! Make sure you get two.
A PSMA scan is very sensitive, the usal CT/bone scan would have been negative probably. They will usually not be able to remove all affected lymph nodes during surgery. So after the six months of ADT you will probably get salvage radiation.
I believe I read it is very sensitive for metastatic sites larger than 4-5 mm..still a limitation?
Yes, a PSMA scan will detect mets from about 4 mm and larger. What I wanted to say is that if he had a CT/bone scan the result would be "clear". Nothing detected. However if he does a PSMA scan at the same time you will often detect lymph node mets. But the patient is not in a worse oncological situation just because he got a more sensitive imaging than CT/bone scan.
I like your plans, except why stop zytiga and firmagon after six months? You are only giving new cancer cell lines a chance to find a work around to those drugs.
In order to get as clear as possible picture from PSMA scan that isn't impacted by hormone therapy. I have a cancer that is low PSA producing, so monitoring PSA isn't a good measure.
Got ya.
Did you i have a PSMA PET./CT already?
yes
Have had PSMA, CT, Bone and MRI - plus a regular PET scan. Have had every possible imaging technique possible at this point.
Glad to know you have been very well studied. Excellent.
What is the logic to do surgery and then plan for possible radiation therapy/ Why is that better than radiation to the prostate and SBRT boosters to the know tumors in the prostate plus whole pelvis radiation with boosters to the positive lymph nodes plus 2 years of ADT and zytiga which has show to reduce BCR ?
I ask because you are been treated by leading experts in PC and I just want to know where my understanding of these situations went wrong.
I was heavily against surgery, and really didn't want to do it because of side effects. However, given my age (54) doctors want to treat as aggressively as possible. And surgery after radiation isn't really an option.
Thanks.
In this study they found better results for surgery than for radiation for high-risk patients.
I was in your exact situation at 46 yrs old. Gleason 9. Wondering why they don’t have you doing chemo?
I believe because Zytiga is thought to be as effective, but less toxic and more tolerable.
But I thought hormones mask where as chemo kills?
I think hormones starve, and shrink...and then surgery to remove
Firmagon is an Antagonist type drug for ADT, but the injections I found very painful for several days and it created a kind of a mini potbelly for me. Has your doctor looked at the other Antagonist drug? Relugolix is a pill form of an Antagonist drug, so works the same way. It was a major game-changer for me to be able to switch to a pill.
FYIIn 2012, I was dx with PC with a few tumors (4-5) and a Gkeason 9. I was otherwise in good health. My MO at the time, Dr. Scher, from MSKCC in NYC was a world renowned leader in the field. Because of my young(ish) age and fitness he offered/suggested that I be his 13th patient to undergo prostate removal surgery. I went forward with it even though he fully explained to me that surgery when the cancer had spread is novel and unproven. In addition, the 2 other experts in NYC who I consulted with basically felt surgery was inappropriate. I had it done. I went n 3 "vacations" during the first 5 years and I am still responding to Lupron and Zytiga (although my PSA is now measurable and has risen very slightly over the ast 2 readings).
I HAVE NO IDEA WHETHER THE SURGERY BENEFITTED ME OR THE OTHER 12 PATIENTS WHO HAD IT BEFORE ME. They also removed about 34 lymph nodes from my stomach area, one of which tested positive.
I don't BELIEVE there is any evidence demonstrating that surgery for metPC is helpful.
But- MAYBE there isn't sufficient info to make a valid determination, yet.
Maybe you will help add to the data.
My prostate surgery was performed by Dr. Scardino, who was a leader in nerve-sparing surgery. Another surgeon performed the lymph node removal from the stomach area. Dr. Scardino was NOT schooled in robotic surgery, so he did it "open"- the old school way. I don't recall the pain following surgery but I do recall basically sitting on my couch or recliner for 2 weeks.
Side Effects: I did need to wear a diaper for a few days, maybe 2 weeks (hard to recall). I think I had a catheter for a week or 2. I think I was on painkillers for a week or so.
I can still get an erection, although Lupron has shrunk my pens and killed my sex-drive. And- Fortunately, I don't leak urine, except for maybe a teaspoon amount on RARE occasions when I have a Big belly laugh, a BIG cough or I am "pushing" out a fart.
Despite still not knowing if the surgery helped fight the cancer, I am still happy I had it done because I wanted to do everything I possibly could to be live life, spend time with my wife and most importantly, to see my 3 boys grow up. Again- I have NO IDEA if I benefitted from the surgery but- WHO KNOWS- maybe I did.
Your MSKCC so you are probably in great hands.
The one piece of advice I would offer is to make sure your surgeon (robotic or not) has LOTS of experience with sparing the nerves that help you urinate and get an erection.
I wish you the best!!!
You and I have exact same history except that my seminal v's were invaded as well as nerve bundles. They removed, as I remember, 30 lymphs, with one infected. I had to get an implant.
Survivor1965- I just read your bio and see the many similarities you referred to.Best of luck to both of us that we continue responding wellto treatment.
Thanks so much for sharing your experience. Its helps reaffirm the treatment choice.
I hope I didn't come off suggesting that you do, or don't, have the surgery. I was only trying to provide you with information that would assist you in making a well-informed and intelligent choice.
No, not at all. Sharing your experience is very helpful - thank you!
I had very similar path report, except for lymph nodes, but a different age category. I am 73. I elected surgery. Pre surgery psa was 8.6. post surgery it was undetectable. I opted for RP and adjuvant radiation. During RP only one lymph node was sampled and it was negative. Here is the link to a summary article referencing a research paper that convinced me to do adjuvant radiation. My radiation included 40 sessions. 28 with lymph nodes and pelvis and 12 with pelvis only. Last radiation is this week. Also did Casodex and Lupron for 6 months. ascopost.com/news/june-2021...
After the scans, is the plan to do more ADT? I don't believe 6 months of ADT + zytiga is enough treatment for very high risk prostate cancer.
Need advice - radiation to inguinal lymph nodes and rib
Mets to lungs and lymph nodes need some advice 
Treatment after RP with affected lymph nodes
What would you do?
