PSMA scan report is in : (((

Just a quick update :

MRI results in - all looks unremarkable and only 2 nodes seen. One of them is that groin one.

I was thinking - could it be that the 3 that actually had PC mets shrunk so much due to Orgovyx that they are invisible now ? And this one outlier stayed the same size since it is not actually PC but enlarged and avid due to some inflammatory process there ? 🧐

We got note from doctors (urologist and 2 ROs ) that they think that groin node is most probably not PC. 🧿 (*knock the wood) . BUT I do not trust anybody any more *sigh, 😔 we will insist on taking that node out to be examined. It is very easily reachable - just under the skin, actually. I am sick and tiered of guessing games ...

I had had slightly hardened groin lymph nodes. Was advised against removing them because of a 5% Edema risk. I would discuss thst first.

@topf
Thanks Topf for your advice 👍 ! We will ask about that, definitely good to know .
Were they hardened during your preliminary PC diagnosis, or it was unrelated event ?
Thank you in advance for any additional input. We have zoom meeting tomorrow so I am preparing notes *sigh My belly is already churning 🥴, I hate appointments so much : (((

@surftohealth88 Orgovyx will absolutely shrink those nodes - no question. The still avid one is probably not PCa, since it did not shrink.
Instead of biopsy or removal, the RO will probably just treat it along with the rest; or perhaps, you INSIST that they treat it.
I really don’t believe that RO’s pick and choose which nodes to treat; they treat the entire pelvis in general, avoiding critical organs. Best,
Phil

@surftohealth88 They had hardened a few years back. My PCP was concerned after my PCa disgnosis and sent me to a general surgeon. He was not very concerned and mentioned the 5% risk. They would need to take the entire nodes out, not just do a needle biopsy.

@surftohealth88: I too am now in the node world, as my PET scan report confirmed what was seen in the earlier MRI : "0.6 cm right internal iliac lymph node with moderate tracer uptake max SUV 4.8. 5 mm short axis right pelvic sidewall lymph node with low level tracer uptake and SUV max of 1.3." I asked my RO yesterday if the small one might not be cancerous and whether it made a difference in treatment plan. He said the SRT plan is basically the same since they were going to treat both (and other nodes) anyway, now they will just give an extra boost to those 2. SRT starts 6/17; I had the simulation this am.
I finally succeeded in getting a hormone drug--I will start on bicalutamide tonight, which will be the beginning of a likely 2-year stretch. During my 6/16 appointment with my MO, she can switch me to another if she thinks that's what's need (and we can discuss the patch). PSA results available tomorrow; hoping for less than 0.2, but not optimistic.

@topf
Was advised similar, that removing just one inguinal node in a case of a believed cancer like lymphoma for biopsy if your only node removed was generally not an issue, but they would try core needle biopsy first to see if successful biopsy results before going for the whole node removal. Was advised removing the whole node again was typically not an issue, but preferred to do only on possible relapsed case of lymphoma when needle biopsy results were more likely be inconclusive of specific’s. Also going through that now with one inguinal node enlarged, but both oncologist’s, for my PC and lymphoma doubt the inguinal node is tied to prostate. The inguinal nodes are very very rarely tied to PC. They also said removing one node from a chain is usually not a problem, however combining the removal of different nodes from different chains increases chances for lymphedema as regardless all chains are connected if even though they protect and drain from different areas. The more nodes removed over time regardless from different areas increases lymphedema risk and it is still surgery, and you are stuck with lymphedema .My PC surgeon said removing multiple nodes in the case of PC are not usually any concern for lymphedema because the obturator nodes don’t drain down into the legs for lymphedema. My current enlarged node is in a watch and wait monitoring the size with annual CT scans and blood work.

OK - we had ZOOM meeting and we were told the same thing which was said to @topf and @wheel1 - it is VERY rare for PC to go to those nodes , somehow it is almost never there.
He also confirmed that it is risky proposition especially when node is not enlarged to the point to be easily distinguished from bunch of others around so than multiple nodes would be taken out and in that cause edema can start and even become a permanent problem. : /

I asked about needle aspiration and he promised that he will ask specialist about that (person who does needle node biopsies) but still thinks that it will be impossible to guess which node to probe because this node is not enlarged - it just has faint glow under PSMA.

So, we will wait for specialist to tell us if it is even possible *sigh.

Next app. is next week with MO and for that app. we have to prepare arguments for getting Nubeqa instead of Abiraterone monstrosity 😬 *sigh. Keeping our fingers crossed ...

Thanks 🙏 @topf and @wheel1 for sharing your experiences with inguinal nodes - it helps me feel much more calm and confident knowing that your doctors advised against excision too and also that they told you that PC is almost never in those nodes. If 3 independent specialists are saying the same thing in 3 different hospitals, it is probably true (?). I guess I will have to live with one node having rave party in my husband's groin 😋 for no reason !

@heavyphil

Heh, you would guess , right ? BUT, listen to this, since we raised so much dust they have now different ideas - RT can involve the whole region and all nodes and extra boost to "glow worms" but it can also be a newer approach with "PSMA directed" treatment - treating only what glows and keeping Gys in a bank, so to speak, for "tertiary events" . Now I asked them to involve a third RO with assessment and recommendation. We will have consultations with our RO the last , and will ask to hear all pros and cons of every approach, BUT, IMHO it should be all blasted and cleaned once and for all ⚡️ !!! (hopefully 🧿)
PS : still waiting for Stanford and UCLA to call back ....

@bikeman1
Thanks Bikeman for the update 💗 : ))) !

I am so glad to hear that medication part is resolved : ))) and that you already had simulation ! Wow - how it looked like ?

Did you get tattoo markers or gold beads ? I hope it went smooth and now you are ready to roll in June ! 🙌

Organization and coordination of all these steps here goes very, very slow, as usual... : /

Keeping my fingers crossed for less than 0.2 PSA 🍀 !

PS: Will you be using bicalutamide alone or in combo with Orgovyx ?