Thanks to everyone who has given me excellent advice regarding my husband’s pca recurrence. Today we met with an MSK uro oncologist for a second opinion. He completely agreed and supported the plan of radiating the high pelvic nodes (including the lower abdominal nodes along the bifurcation) and slightly above. He also agreed with radiating the whole pelvis as an insurance policy even though there is no PSMA avidity that can be seen currently. He said if there was a. need to radiate the pelvic area later, then there could be a risk of radiation crossing over into an upper pelvic field that had already been radiated, so the best is to plan for a full sweep. He said the avid nodes are along the mid line and should not affect any major organs. He also agreed with the doublet therapy he is on (Lupron/Zytiga with pred), and said he would recommend at least two years of this (to my husband’s dismay). He believes that with my husband’s initial high psa (47), and subsequent stage 3b with Gleason 9, that these nodes may have already been positive at dx, but that they were too small for a CT scan or MRI to detect. The neoadjuvant 3 month Lupron put them to sleep. He believes that this current treatment plan may be curative, but if not, at least we are wiping out the playing field for the time being and starting fresh. He agreed with our Yale oncologist, that early chemo is unwarranted. (Thanks for your view on that too Tall_Allen). I feel better about everything overall now,and just wanted to share with you all, I hope you have a great weekend. We are getting ready for our first big snow in more than two years.
Stephanie
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Hi MoonRocket, I read your bio . How are you doing now? It looks like you had a BCR after three years on ADT. I hope everything is under control for you.
Sounds very similar to my husband's original diagnosis and treatment protocol recommendations....he was PSA 46.6, Gleason 9 (5+4)( Gleason 8 per Hopkins second opinion), 40% of cores positive .
He had 28 Proton radiation treatments, just to prostate. I'm unclear why the pelvic lymph nodes were not included. No Space Oar was recommended due to lesion close to rectal wall.
He started Orgovyx in September and added Zytiga generic about three weeks ago with prednisone. Both recommended for two years. He has been experiencing some high blood pressure since starting Zytiga....FU with medical oncology nurse and labs this coming week.
Thanks for sharing! I will follow you closely to see how your husband is doing. It sounds like he is on the right path, and I pray his labs stay stable for many years to come.
I read your other posts..I .didn't realize your husband is post prostatectomy, with BCR and with mets in lymph nodes already...so our guys are similar for PSA and Gleason score....but not in terms of advancement and treatment history... Mine had MRI and PSMA PET in June( PET negative besides two uptakes in ribs ,,,deemed not of concern) ....two and a half months before his biopsy....PSA went up about 7 points between scans and biopsy....doctors assumed advanced disease because of high risk features ....
Yes…that is correct. He likely had micromets at the time of his diagnosis, and they did not appear on the ct or bone scan. Only the PSMA scan found them. Praying that the radiation and ADT will destroy the cancer in the lymph nodes!🙏
Thank you. I am at peace knowing we have researched and are doing everything we can. I do worry for patients who blindly trust and do not research and seek out opinions. This forum is an amazing resource.
Hi, we don’t have the exact number but likely between .16 and .27 My husband’s psa rose from undetectable to .16 within two months, we panicked and our doctor ordered the PSMA scan thinking nothing would show up. So my husband’s psa rose from .16 to .27 in three weeks and the PSMA was done in between those psa tests. The MSK oncologist believes that the nodes that were avid were also avid at original diagnosis, but just unseen. He thinks the 3 month neoadjuvant Lupron he took kept them asleep all this time, and that my husband’s subsequent testosterone rise to 550 is waking them up. They are not enlarged yet, and we are hopeful the ADT and the radiation will wipe the slate at least for a long while.🙏
Thanks, hopefully the radiation will put them back to sleep for a long time. His is still 0.02 for now.... Hoping for the best with everything I feed him 😂
I’m up late tonight anticipating a delayed opening for school tomorrow due to icing. I wouldn’t be worried about the subtle increase. We were counseled that small undetectable rises like that can be small amounts of benign prostatic tissue growing along the prostate bed where the prostate was excised, but I know you will monitor it closely. My husband is doing well…he’s worried, but we have to trust the process will give him a long remission. He responded almost instantaneously to the Casodex then Lupron/Zytiga/Pred combo, yielding a <0.008 in three weeks following the ADT. His Pred has been upped to 7.5 as recommended by his rheumatologist as he had a systemic inflammatory response to the cancer. His germ line genetic testing came back negative for all mutations (phew). I requested Effexor (an SSNRI)for him to help with depression, energy and hot flashes. He is starting out on a baby dose of 37.5 mg, and we will increase as needed. He is getting the CT Stim mapping for EBRT to the pelvis and the avid retroperitoneal lymph nodes., which he will start at the end of February. I will keep you updated . I am worried, but I do believe he is getting excellent care. I will continue to pray that your husband remains in remission!🙏
Hi Izzygirl1, We are in Northeastern Connecticut (Vernon in Tolland County). Please feel free to message me if you ever need to chat or would like my cell number. We have "worried wife syndrome" in common.
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sigh... How's your husband?
Has others received treatment at MSK, how did they do
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