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PSMA scan - a good idea or not?

User
Posted 06 January 2018 14:10:45(UTC)
Hi all,

I was very interested in reading Ulsterman’s topic on PSMA scan, I had no idea of the different types of scans and only listened to the Urology/Oncology treatment suggestions of bone scan and MRi (both didn’t show anything)

To briefly recap on my experience of this disease, I was diagnosed in 2014, Gleason 7, PSA 8.
Opted for RP, which went well till this summer when my PSA started to rise to 0.1, then to 0.2

Margins clear, lymph node removal - clear of cancer cells also

I have started Bicalutamide 1 month ago and no side effects other than breast / nipple pain and possible tissue growth (seeking tamoxifen for this)

And I will start salvage radiotherapy in the coming month

The oncologist admitted that she didn’t know where the cancer cells are, how could she? But it feels a bit hit and miss to me to just hit the prostate bed anyway
So I’m wondering if a PSMA scan might shed a bit more accuracy?
I don’t think it’s available in Scotland so would likely have to go private - which I would if it in anyway increased my chances with this cancer

Any thoughts/advice welcomed

Bill
User
Posted 06 January 2018 20:44:58(UTC)

That’s why I rejected RT 3 times as it was hit and miss and likely non-curative. However in your case with such low numbers , then RT makes sense as a possible still curative path. Mine was different as PSA so high and rapid post op they suspected advanced. It’s a difficult decision. I did 11 months HT which was Bical and Tamoxifen which lowered the psa , then we all sat round the table and wondered what we were trying to achieve!!! I wouldn’t have scatter-gun RT on a whim , yet HT only was a path to demise. So we stopped and let it grow wherever it was , so that we could see it with scans. And both a Choline and PSMA PET scan found nothing at all with psa approx 3. Yet they can see a clanger fart on the moon. No one knows where my psa is coming from , but it’s too much to be coming from the prostate bed alone , so I’m very chuffed I didn’t let protocol just fry my innards with RT as it’s their chosen standard. I think I’m fully in control of my cancer through informed choice and I wouldn’t have it any other way. I’m not arrogant —- at each stage I’ve clearly asked if I’m being stupid and been told no I’m not. You have time to research and get it right for yourself. Personally I think only the very luck few get it out and are cured. The rest of us get it back. Even with salvage RT 50% fail, but they may buy more time. Personally I had the op against my wishes. I hated the aftermath both physically and mentally and to be honest it’s never ending. But I’m doing it my way with as little time as possible sat in huge hospital queues and risking side-effects and pain and general overwhelming anxiety. Maybe I’m different but I’m happier as I am living a normal life. I’m definitely going to die of PCa without a shadow of doubt ( unless I have a heart attack first ) , but I’m not going to over treat something they can’t see , and they admit that.
Best wishes as ever !




If life gives you lemons , then make lemonade
Thanked 1 time
User
Posted 06 January 2018 21:55:42(UTC)

Hi Bill,

Oncologists often have to use their experience and intuition in concert with PSA patterns etc in deciding where to point the RT shotgun. Your oncologist has been very frank on this. More advanced scans can sometimes highlight cancer cells that lesser scans can miss but there is no guarantee that regardless of the scan used that any, yet alone all cancer cells will be found. Certainly,for salvage RT it is helpful to be able to point the gun at the appropriate area(s) or in some cases a small number of say nodes can be surgically removed. The best results correlate with early diagnosis and early salvage treatment. This is a very good and easily assimilated take on the situation, which I think you and other members may find interesting. https://pcnrv.blogspot.co.uk/2016/12/pet-scans-for-prostate-cancer.html

 

NB.  This article is now a year old and the number one scan mentioned in this evolving area is now licensed by the originators John Hopkins to be distributed in Australia.  Where else it is available outside the US and Canada I have yet to ascertain.

Barry
User
Posted 06 January 2018 22:30:23(UTC)
Bill

My oncologist doesn't know where my cancer is and is keen to get as full a picture as possible. Hence the PSMA scan.

I asked why I wasn't getting any hormone therapy, say for three months before starting radiotherapy and she said I didn't need it, but the PSMA scan might give her a better indication of what to do.

How long will you be on hormone therapy?

Ulsterman
User
Posted 06 January 2018 22:40:15(UTC)
Two years mate
User
Posted 06 January 2018 22:43:28(UTC)
Oh. I thought maybe you'd only be on for a short while.

Hope it goes well.
User
Posted 06 January 2018 23:16:00(UTC)

Hi Bill, the research suggests that if the PSA starts low after RP and then slowly rises over the next few years then in all likelihood it is cells left in or around the prostate bed and salvage RT has a goid chsbce of working. If on the other hand the PSA is high immediately after RP or starts low but rises rapidly then it is modt likrly mets or micromets and RT would not be curative.

It seems that you fall into the first group, as did John. Six years post salvage RT he is holding his own at and around 0.1 so in our case it was worth doing.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 07 January 2018 10:29:25(UTC)
Hi Bill, I agree with Lyn that it would seem you fall into the first group where any recurrence has a high chance of being localised.
Unfortunately I fall into the second group, my PSA remained <0.1 for between 9 months and 11 months then quickly jumped to 0.3 and then to 0.7 with a PSA doubling time of 1.2 months. I decided to go ahead with salvage radiotherapy anyway as enhanced MRI and PET scans picked up areas of recurrence. My oncologist is convinced I have micro metastasis but agreed that evidence suggests high risk recurrences still benefit from salvage radiotherapy. I am going through a phase of worry about this which is difficult to deal with. In your case the PSA is still very low but slowly increasing. If your oncologist is convinced this is a recurrence then hitting it early has a good chance of curing you. Lyn’s John is a good example.
Thanked 1 time
User
Posted 07 January 2018 13:15:35(UTC)
Thanks for your responses folks 👍

Feeling a bit more reassured now with the treatment plan - also saved me from harassing the Oncologist unnecessarily
 
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