MSK Consult Today: Thanks to everyone... - Advanced Prostate...

Advanced Prostate Cancer

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MSK Consult Today

103532 profile image
23 Replies

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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tn12 profile image
tn12

Ugh snow. Where are you from? We are in Canada!

103532 profile image
103532 in reply totn12

Connecticut! I wish it was during the work week though. As an educator, I live for snow days!😀

MoonRocket profile image
MoonRocket

I completed the same treatment plan back in 2019. 2 years goes fast.

103532 profile image
103532 in reply toMoonRocket

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.

CancerConcierge profile image
CancerConcierge

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.

Best of luck!

103532 profile image
103532 in reply toCancerConcierge

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.

CancerConcierge profile image
CancerConcierge in reply to103532

Thanks ....me too:)

CancerConcierge profile image
CancerConcierge in reply to103532

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 ....

103532 profile image
103532 in reply toCancerConcierge

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!🙏

CancerConcierge profile image
CancerConcierge in reply to103532

Sounds like you’ve had expert consultations, and his treatment plan has every possibility of being curative!

Always scary, but good to know you will be kicking his cancer to the curb with aggressive treatment!

103532 profile image
103532 in reply toCancerConcierge

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.

tn12 profile image
tn12 in reply to103532

Hi Stephanie, what was his PSA when the PSMA found the micromets that CT/Bone Scan didn't?

103532 profile image
103532 in reply totn12

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.🙏

tn12 profile image
tn12 in reply to103532

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 😂

103532 profile image
103532 in reply totn12

The fact that your psa has remained undetectable for two years without intervention speaks volumes. That is very reassuring.

tn12 profile image
tn12 in reply to103532

PSA test yesterday after 25 months RP is now 0.04 from 0.02 :( sigh... How's your husband?

103532 profile image
103532 in reply totn12

Hi tn12,

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!🙏

Stephanie

podsart profile image
podsart

i would like to ask who was the MSK onc you consulted?

103532 profile image
103532 in reply topodsart

Hi Podsart,

Our second opinion consult was with Dr. Min Yuen Teo at the West Harrison office.

podsart profile image
podsart in reply to103532

thanks

Izzygirl1 profile image
Izzygirl1 in reply to103532

That’s who we met with last month also for a second opinion. I’m in northern CT.

103532 profile image
103532 in reply toIzzygirl1

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.

Stephanie

Izzygirl1 profile image
Izzygirl1 in reply to103532

OMG. I would love to connect!

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