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Recurrence Post RALP: Did a second opinion change your plan?
Prostate Cancer | Last Active: Apr 11 10:39am | Replies (58)Comment receiving replies
@surftohealth88 It is. I am at Mayo Rochester. They do not answer what will happen if it does not show on the PSMA, which makes me want to reach out somewhere else. I wanted ultra-sensitive PSA testing, and they said no. I asked for Decipher, they said no. I wanted to get started at .10, They said to wait. Now I am at .17 and told to wait four more weeks. I will see a radiologist at that time but they said it was not time to see an oncologist. Geographically, I am closer to U of Mich and the Cleveland Clinic. I don't want to be a pain in the ass but I feel uneasy and want to know if I am off base.
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@dhasper It RARELY shows up on PET at such low levels, so I wouldn’t use that as your yardstick.
Rising PSA - and the velocity of it - is a much better indicator of cancer growth.
With your pathological features, recurrence is more probable so it is not far fetched to think it might be back.
I insisted on ADT for my SRT and it was not nearly as bad (for ME) as it is portrayed. Lobby for Orgovyx - it is light years ahead of Lupron.
I did 6 months ADT but it’s up to your RO how long you should be on it; however, some recent studies indicate that longer than 6 months (in most cases not genetically mediated) offers no benefit…Best,
Phil
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@dhasper
I agree and I understand your frustration. We were denied MO and RO consultations initially but my husband was very insistent and persistent until he got referral ! He is treated in a big center here on the West Coast. In our experience one has to be a "pest" to get any attention, unfortunately. If we did not get what we asked for we would change provider, that is for sure.
Regarding uPSA , it is a norm in this particular center and it was ordered every 3 mos. We did uPSA "in between months" on our own in local lab. because I just do not trust anybody any more.
I forgot about PSMA - we were told that yes, PSMA will be performed if there is ever BCR but the chance of seeing anything at 0.1 is very small. Regardless, we will proceed with treatment because when BCR happens so fast after RP it is a greater chance that something was left in a prostate bed or is in lymph-nodes than that it is very far away, at least according to some suggestions.
It is completely normal to seek second or even third opinion. We considered going to UCLA for second opinion but one member here had exact situation as we had and he went to that exact RO that we were considering. He shared the info he got and it was the same that we got here in the Bay Area so we did not seek second opinion, but it does not mean that we will not in the future.