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Bad news again (still)
Perhaps you read my story, perhaps not.
Gleason 8, spread to bladder neck 55 years old.
Prostatectomy with bladder lesion cut out.
Recurrence after a year, 39 External Beam with ADT for 6 months
Was undetectable for 8 years with no ADT.
last year PSA .15, and .30 had the PETScan found cancer in a lymph node, VA said your stage 4 and all we got is ADT. ADT and I did not get along previously.
Called Mayo, Great Doc recommended Photon SBRT (single shot), I tolerated that very well.
Now 6 months later PSA .38
I wonder what's next?
Someone said now that I am 66 as opposed to 55, I don't have as much testosterone, and it shouldn't be as bad.
I don't think I have ever had my testosterone level tested before, but they did yesterday. 407 where reference range is 221-870.
This thing that has invaded my body is really fucking me up
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It is time for ADT and you may need an ARSI as well. Something, your doctor will decide.
There is an alternative, it isn’t fully approved, but a lot of doctors will allow you to do it because it is very successful. The change is, you take estradiol patches instead of ADT and it reduces your testosterone but has many fewer side effects. They just finished a patch study that shows it is just as successful as ADT. I know someone who’s been doing it for many years. He now uses a gel, And gets tested regularly to make sure that he’s got the right level of estrogen in his body.
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11 Reactionshttps://www.urotoday.com/categories-media/2101-centers-of-excellence/localized-prostate-cancer-coe/4308-patch-trial-evaluates-transdermal-estradiol-in-non-metastatic-prostate-cancer-duncan-gilbert.html
Best,
Phil
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2 ReactionsHere’s another, https://www.renalandurologynews.com/news/transdermal-estradiol-may-offer-another-option-for-high-risk-prostate-cancer/
Phil
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2 ReactionsYou don't mention going back to the Doc that treated you at Mayo? That would be my first step. A second met may have been too small to spot in your first PSMA. Good to get their input especially as you don't tolerate ADT very well.
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1 ReactionJeff does the PSA drops too?
Zzotte
Usually drops to undetectable (< .1) with 1 or both drugs. Takes 2 to 3 months for most people to hit bottom.
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1 ReactionYup got the news Friday sent Doc a message awaiting his reply.
It feels like you've given me a potential timeline. Gleason 9, diagnosed last summer at age 66, spread to bladder neck and LVI. Surgery 6 months ago. Undetectable at first PSA after 3+ months. Gleason 9 feels like recurrence is most likely, the question is when that will happen.
Had One guy with a Gleason nine came to the Ancan.org Weekly advanced prostate cancer meeting a few weeks ago to discuss how his PSA started rising 30 year after surgery. Lots of other people with Gleason nines’s Come in and have long periods of time between recurrence.
Other people have Come to the meetings with Gleason nine and many metastasis, and therefore have limited overall survival.
Results are all over the place. A Gleason nine is not a death sentence.