Failed surgery and radiation since started 6 years ago. Psa is at .51. Trying to get into the clinical trial for the 18 F pet scan at NIH. My question is: is it worth it? What will it do for me if they find something? My MO at MSK wanted me to start ADT when my psa was .36 in August of 2018 and I didn’t listen and kept delaying it untill now. I ALWAYS wonder if these scans has any value aside from trying to do targeted radiation which has toxicity and no definite research if it prolongs survival And some folks here think it might delay the start of ADT which there is also a research if I am not wrong that says starting adt early does not change QOL comparing to starting late. So my thinking is if I am going to start adt anyways if the scan finds or don’t finds why doing the scan anyways? Any thoughts would be greatly appreciated. Thanks.
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StayingOptimistic
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Only 2 years in, but ADT really does work. Had clear scans, so went with prostatectomy. No clear borders and positive lymph nodes. PSA climbed 54 to 64 in first six weeks. I guess you could call that failed surgery? ADT drugs dropped PSA from 64 to 6.5 in 8 weeks. I'd say it works. Chemo. for 5 sessions until PSA started rising. Added Xtamdi and PSA started dropping again. Went 9 cycles and had to stop account combined side effects got to bad to live with. Continued xtandi till it made me an invalid (one of the lucky 5% who suffer excess toxicity) cut dose, cut dose, and cut dose. Now at 86 mg daily average and in remission with PSA stable in 0.135 range for last 9 months.. .Hard fight, but with fast growing, aggressive, invasive, Gleason 9/10 pca and a prognosis of 12-18 mo. I'm looking good now and say "it was worth it."
Will the scan change you treatment?? Probably not. ADT or orchiectomy no mater what they find.
Good luck and I'm sure you will get a lot of other opinions before this posts ink is even dry.
remember u will face ups and downs for years. u will be taking lots of drugs and some will work for awhile and others longer its called being patient. so just roll with it and be happy
i don't think they will put u in a trial when your numbers is only.18. non cancer males runs from .0-4.0 so don't be upset if they don't put u in a trial system. i means there are years of different treatments before u get to the trials
I guess you did not ask: why do a bone scan, I just need Lupron if the PSA value rises. The 18 F pet scan will tell you where you have bone and lymph node mets. You could decide to have these radiated with SBRT and lower the PSA value this way. I think it makes sense to have a good diagnosis.
Lots of tests and data can some times be overwhelming. I prefer as much as possible and then sort out what is most meaningful to me at this point. I am 80 years and counting having lived with this beast for going on nine years. I question each treatment step along the way and weigh how the probable results will impact my life path. Ignorance is not bliss with this disease. If you have information that you can understand then there should be little remorse later. Wishing you good choices and good living.
Is it worth it? Well to answer your question I answered it scientifically, I tossed a coin. Heads you elect to receive or Tails you elect to kick. It came out heads so it looks like you're going to receive.
You are in a good situation. 6 years in, surgery and radiation, PSA 0.5. That was me 10 years ago. Current PSA 0.5. (a few ups in that period) Everyone says: get your PSA as low as possible and try to keep it there. Good advice (but be aware of limitations). What used to be called a "standard operating procedure" is nowadays a "standard of care", which is ADT. It does work. For a while. It has traditionally been the opening step in what my onco calls “the dance of the androgens”, with increasingly sophisticated anti-androgens being applied in response to scans and PSA and other markers. In my case, I waited until PSA about 20 came up. Probably a mistake, should have done it earlier. I now reckon hit it early and hard. But we didn’t know much back then.
Anyway, a scan at your stage will not determine the next treatment. When that treatment fails is the time to take a scan to figure out what to do next. At a PSA of 0.5, odds are that there is nothing to see yet anyway.
However we know a lot more now than we did 10 years ago and early use of the old and low side-effect anti-androgen, bicalutamide may be useful, either with the ADT from the start, or even by itself as a monotherapy. You will need to discuss options with your medical advisers. Another set of repurposed anti-androgens, dutasteride (Avodart) or finasteride in combination with the above are also a consideration. These are all cheap drugs.
By ADT I mean chemical castration (sorry about the brutal language, you need to get used to it) using a gnhr agonist (or antagonist) like Lupron or Zoladex. This lowers blood testosterone with many nasty effects. One school of thought (more evident in Europe I believe) favours first use of bicalutamide and other anti-androgens alone because they do not alter blood testosterone, they only block the cancer’s access to it. Much better for quality of life. However all these fail after a couple of years. Others say chuck the lot at it, others say start on ADT and add anti-androgens when it fails. The latter is what I did at the time but I doubt my doc would see it as simple as that nowadays.
Anyway, these are things you should discuss with your doctors. I invoke the Nalakrats clause: I am not a doctor, only a mere reporter.
Best of luck. This group is a great resource. Trawling through old posts and using the search function is the way to get yourself informed at what is a pretty stressful time.
Thanks, Magnus. You mean you won’t try to find it with one of these fansy accurate 18F pet scan and try to treat it with radiation to postpone the start of ADT?
You had only a Gleason 3/4 did your pathology report show any thing else Just had savage after 6years had a positive margin best of luck to you it can be overwhelming
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