PSMA scan report is in : (((

Posted by surftohealth88 @surftohealth88, 1 day ago

Ok .... First I want to say that PSMA obviously works at very low PSA, at lest worked for us at 0.14. Tracer used was F-18.

There are 4 nodes with mild uptake in pelvic area and one in the groin area (inguinal) which they think is possibly not PC and will be checked by biopsy or incision. My husband will ask for it to be removed and examined since it is on the surface, and he likes "things removed"in general. Other nodes are 3 iliac and one mesorectal.

So yeah 😔, I wish there was "nothing" but at least we know where the cancer is and it can be targeted. RO thinks that this does not change initial plan but it will be intensified , more Gys to nodes and he will talk to MO regarding ADT. Possibly now a year of ADT with addition of Nubeqa. So far my husband has zero SA from Orgovyx, but only 7 days passed since he started it, so we will see.

Warning to new patients :

1) - INSIST on node sampling during RP (we did but we were ignored) , so I do not know - maybe tell that you will raise the hell if they do not sample nodes (???). I am so angry, I can not even describe the state of me at this moment. We asked numerous times for nodes to be dissected since one was faintly glowing, my husband asked for that even right before he was wheeled in for surgery - and surgeon did not do it "since nodes looked normal" - somebody just sho*t me already !!!! 🤬

2) DO NOT WAIT for uPSA to go to over 0.2 - things will bee seen on PSMA even with mild uptake ! The earlier you start with sRT , the better.

Hugssss to alllll 🤗 and hoping that you are all having much better day.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

melvinw | @melvinw | 1 day ago

I am so sorry to hear of your travails, not only with the cancer but the medical establishment. I have often said to friends that ask about my status that at least half of the anxiety, frustration and anger is from dealing with the medical system. I have ditched two urologists and two oncologists in my 12 years of dealing with prostate cancer. Fortunately, I am in the hands of providers now who collaborate with me, listen to me, and treat me as equals, not just a biological substrate for a disease they want to “cure". I do hope that you and Mr Surf lock in with a similar-minded care team going forward.

And I am another case in point of PSMA PET detecting a cancerous lesion (nodule in my prostate bed) at low PSA (0.11). Wasn’t even subtle or equivocal. Maximum SUV of 13.3. Maybe we are the statistical outliers, but the point is that such outliers do exist. The relationship between PSA and the ability of PSMA PET scans to detect cancer is statistical.

Hoping all the areas of mild uptake are noncancerous.

All My Best,
Mel

edinmaryland | @edinmaryland | 1 day ago

In reply to @surftohealth88 "@edinmaryland Thanks Ed so much for being here for us 🥰🌺 - means a LOT !" + (show)

@surftohealth88
likewise

dhasper | @dhasper | 22 hours ago

Surf. I am finishing my radiation on Monday and 3.5 weeks into Lupron with no side effects yet. I know I am on radiation because my urinary and bowel rhythms are off but the worse I have had is one day of diarrhea. I started on therapy at PSA of .23. I actually envy your husband in that the PSMA showed something. My next move is an online consultation second opinion with U of Michigan on June 9. Like you and your husband this cribiform, IDC combined with early recurrence has me concerned. Mayo has me only set up for 4 months of ADT and I need to make sure that is appropriate in the context of cribiform and IDC. Best wishes to both of you. As always your posts are very informative and helpful.

retireddoc | @retireddoc | 9 hours ago

In reply to @surftohealth88 "@denis76 They ignored our request to take some lymph nodes out during prostatectomy. It is actually..." + (show)

@surftohealth88
Some lymph nodes containing cancer can clearly "look" abnormal. They become enlarged and their shape changes. But some lymph nodes may harbor cancer cells and "look" totally normal. The surgeon can't see cancer cells. Total BS.

bikeman1 | @bikeman1 | 9 hours ago

In reply to @surftohealth88 "@klein505 Awwwwwww Mrs. K 🥰, thanks so much for those words of hope and encouragement !!!..." + (show)

@surftohealth88
I can only imagine how maddening this is for you. We are all with you and your husband as you get through this.
Your post made me go back and check my pathology report post- surgery. I didn't ask for this, but they removed a number of nodes; eight were examined and all were negative (that gives me slight hope that the PET scan this week will not confirm the recent MRI findings of 2 possibly-involved nodes). I didn't ask for it and they did it. You DID ask for it, and they didn't. Crazy.
My one bit of good news lately: genetic testing for mutations for BRAC2 and many other genes was negative. Yay!

shalom7777777 | @shalom7777777 | 4 hours ago

Sorry for all that you are going through dear. Sending hugs and prayers your way.
Wishing you guys a smooth treatment time and complete recovery soon. God bless!

skiagain | @skiguru84 | 4 hours ago

@jeffmark , @heavyphil

Good morning everybody - I apologize - THIS IS SURF WRITING from the new account that I had to make this morning since my "surftohealth88" account is scrambled somehow by Mayo *sigh. I can not log in and also can not even change the password (???). I guess somebody in admin was "checking" my posts and forgot to close the loop afterwards.
Could somebody please contact Collene (moderator) and ask her on my behalf to check what is going on with my account : ((((. I can not send her PM since new accounts can not send PMs for month or two *sigh.

This is the last thing I needed today : ((, not to be able to be in contact with all of my friends here : ((((.

Sending you allll HUGSSSSSSS and hoping that issue will be resolved very soon. : ((

skiagain | @skiguru84 | 4 hours ago

In reply to @bikeman1 "@surftohealth88 I can only imagine how maddening this is for you. We are all with you..." + (show)

@bikeman1

Hey Bikeman : ), sorry for writing from new account, my original got scrambled by Mayo admin. Hopefully it will be resolved soon : (( and I can not contact them via PM because I "have a new account" *sigh.

Yes, removing nodes for examination is standard procedure actually, in Europe it is done in 97% of cases and here about 67% since it adds time to surgery *sigh, what can I tell you, surgeon was in a hurry. With patient who has Decipher 1 with large cribriform and IDC one would think that it would be obligatory procedure even if we did not ask : (((.

I do not know, just mind-boggling things indeed .

Wishing you scan clean as a whistle : ))) and those are great news for genetic test ! *high five

skiagain | @skiguru84 | 4 hours ago

In reply to @retireddoc "@surftohealth88 Some lymph nodes containing cancer can clearly "look" abnormal. They become enlarged and their shape..." + (show)

@retireddoc

Hi retireddoc, sorry for writing from new account , my original got scrambled by Mayo admin and I can not contact them via PM - I have no idea how will this be resolved.

Yes , it is total BS, I agree 100%. I was very upset when I was informed that no nodes were taken out especially since one had faint glow on PSMA scan. Surgeon was in a hurry to close it all up since he was traveling that evening , I have no other explanation.

I do not know how those guys sleep at night ???? : ((((