Not the news I was hoping for

[PabloK]

Just had my second PSMA/PET scan - the first one was in October and was clear - my PSA had risen to 0.2.

My PSA has been jumping around but has trended up the last two months to 2.5. So I went to Mayo for my scan today.

Impression

1. Worsening of T9 hypermetabolic lesion (miPSMA score 3).

2. New lesion within the right cerebellar fossa suspicious for metastasis to be correlated with the

dedicated brain imaging (miPSMA score 2)

3. Relatively stable nonspecific moderate/borderline prostatic uptake features.

FINDINGS:

Parotid SUV 15.7. Mediastinal blood per SUV 1.9. Liver SUV 10.

New focal abnormal uptake at the superior aspect of the right cerebellar fossa or cerebellum (image

65/SUV 4.6) to be correlated with dedicated brain imaging for potential metastasis.

Enlarging and increasing uptake of the right aspect of T9 crossing the midline (image192/SUV 48.5,

previously 6.4) from increasing bone metastasis.

I meet with my MO next tuesday - so the big question is that i plan on taking my whole family to France in exactly one month so i'm hoping for just being put on ADT/zytiga - any thoughts?

[treedown]

If I am reading your situation right we are in similar stages of progression. How long will you be in France? If I were in your shoes I would get Lupron now and take some casodex on the slight chance of bone pain flare and hope the side effects don't just start kicking in while your on the plane or effect your mood while traveling . That said you may be given the option of waiting until you get home as it only just showed up on PET. But how much will you think about it when your there? I can say that I wasn't thinking dark thoughts that much before I got Lupron but I have a lot after it. Seems like I turned a corner recently on that though and I got my shot March 15 and started Xtandi a little later, just opened my second bottle. Let us know what your MO thinks. France sounds awwwsome.

[PabloK in reply to treedown]

I go in in Tuesday and I think ADT will start then

[treedown in reply to PabloK]

Are you going to talk to your RO about getting the T9 zapped?

[PabloK in reply to treedown]

yup. I'm starting to calm down now - it's always hard when you first get some bad info and it takes time to process it.

I don't have any back pain yet so I want to understand the treatment - and how to work this around our trip - this info reinforces that life is finite and I want to make sure I have a trip with my family (including my 5 yo grandson) that everyone will remember. Life isn't any good if you aren't living it.

I have sent a note to the Dr to get the casodex going - i'm assuming that this will be the first step and don't want to waste any time - and i have a bunch of other puzzling things happening - like my man boobs reappeared after being off ADT for two years. Doesn't make sense but I assume it is all connected some way.

thanks

[treedown in reply to PabloK]

I know and have gone through similar issues. Its our lives from here on out. There's so much available to us now and if they hadn't started using PET/CT we would still have clear scans and being told to wait until something shows I believe. They are having to redevelop new standards for us. TA has mentioned as much and his words come to mind frequently. I breezed through this time and it hit me later, after I started the drugs. Be clear with Dr's that what you what, if I am reading, you right, is best QOL without risk of progression at least until you return from your trip.

Casodex monotherapy (not saying that's what your getting but if it is) is notorious for gynocomastia so the fact yours is kicking in pre new treatment is puzzling. Your options are Tamoxifin and radiation. I am going with radiation but TA prefers Tamoxifin. I know radiation is better before starting treatment (prophylactic). Just a thought if you want to address the moobs. Tamoxifin is more likely to reverse it and TA recommends the patch I understand it may have less side effects.

[PabloK in reply to treedown]

you are correct - there are no guarantees that we will ever be able to take another trip like this - not to mention the $ invested already -

So I used casodex for a week or so before lupron to fight the T surge - so i'm assuming the same this time - but a different doc this time

I've already discussed the moob issue and they were going to look at radiation to just see if it is an option....or is it closing the gate when the horse is already out

[treedown]

Enjoy the trip. Hopefully with all the activity you won't think about PC more than a minute or 2. Grandkids, my son is 16 and I appreciate him everyday. I hope I have the chance to see grandkids but that's a long shot so your lucky in my book. May the luck continue in all things.

My moobs got larger from the first round, even though I lost weight, so I am trying to avoid further growth since I am sure I will be on ADT from here on out. Not sure if my insurance has approved it but my RO seems pretty cautious so doubt he would offer it if he felt it would be a waste 🤞 In a odd way the insurance company approving it puts me at little more ease as well as it shows the don't see it as frivolous or cosmetic.

[j-o-h-n]

I doubt if your tits are going to get bigger in one month....But if they should they may prove to be an advantage in France. BTW if I'm not mistaken (which I usually am) I think Tall_Allen recently wrote that it's not a good idea to Fry those sunny side ups on your chest (do a search to see if I'm right)..... Bon Voyage, a little premature.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/28/2023 3:47 PM DST