My husband's diagnosis is Grade group 5 Gleason 9 (4+5) Scans, and biopsy indicate T3b, N1, ?M0/M1a, latest PSA 9.6. Lesion present, seminal vesciles and abnormal lymph nodes, bone scan clear.
Waiting for a PSMA pet scan to complete investigations.
Hello again,
Have just been told the results from last weeks PET scan do not show anything - we had braced ourselves for lots of fairy lights - and that there are non-secreting PSA forms of prostate cancer. Team meets next week to discuss this, so for now the waiting goes on.... although treatment pathway of hormone therapy followed by radiotherapy will most likely be the same.
Just wondering if anyone has experience of this, please?
Thank you all
Hi Wayfarer,
My dad was recently diagnosed with prostate cancer - PSA 344, T3b N1 M0, Gleason 8. All bone scans clear.
This sounds very similar to your husbands diagnosis, although with my dads high PSA it doesn’t seem to be a non-secreting Psa cancer.
He started his hormone therapy last week, and is having Radiotherapy in 3 months time. Some people on this forum have tablets and injections, but my dad is on a drug that means he only takes one tablet a day, this has only been approved recently in some health authorities
He was offered to go on a medical trial for some new radiotherapy treatment, but this was in London (we are north west based) and it did mean more scans etc and my dad didn’t want to do the travelling so commenced the usual treatment for his staging.
Depending on the outcome of the meeting about your husband and if the treatment is similar you can probably expect the same timeline as above in terms of radiotherapy starting 3-6 months after commencing hormone therapy.
I hope this helps, and I’m sure someone else with be able to help with experience of non-secreting PSA cancers.
thanks.
Thank you for replying. So did your Dad's PET scan also not show any cancer? We know there cancer in the prostate and beyond, but even these didn't show up with the radioactive tracer.
It seems very strange, and we're wondering if there could have been a fault with the scanner...not likely I know! Just another set back on this pc journey.....
Hi,
yes he had a PET scan and a CT scan after MRI, because of the high PSA they were convinced it had spread. But both negative. In fact the oncologist said the CT scan didn’t even pick up the cancer in his Lymph nodes in his pelvis! Whereas the MRI and PET scan did. So the cancer is only just in the lymph nodes.
my dad is on a curative pathway, the oncologist said even with high grade cancers, everyone’s cancer behaves differently.
If your husbands scans don’t show spread it will be right, which is really good news.
Hope this helps.
x
Hi. My prostate was removed a few years ago and I have being hoping that was it over but with my psa rising again I was given a CT scan which came back all clear. I still wasn't convinced I was OK so I pushed for a PET scan and I had 3 lymph node's light up red so I am now on HT till it stops working and then it will be RT.
Hello Wayfarer
I am in a similar situation - PSA rising and I had a CT scan with contrast just over a month ago - no sign of any cancer.
I am told it takes 9 million cancer cells to show up on a scan, trust me to have 8.5 million!! Back in 2 months for another PSA and scan.
I would treat your results with a positive attitude and bring on the HT/RT - let's put this to sleep and then kill it off.
Best wishes - Brian.
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What we, and the prostate nurse who rang, finds strange is that the PSMA Pet scan has not even picked up the cancer known to be in the prostate confirmed by the biopsy (16 of 25). Waiting for the decision after the team discussion, but yes really want treatment to start....
Hi Wayfarer it is a very worrying time but with his diagnosis I am confused as to why he is not on HT now. Having said that, PCa is very slow growing, so a few weeks isn’t going to matter. Hopefully he will be started on tablets next week. It is very good that the PSMA PET hasn’t picked up anything but as others have said, rogue cells can be hiding anywhere. HT will put everything into hibernation. Then it’s a bit of a waiting game, but treatments are improving all the time. Hopefully RT will zap the main culprits and you may get years before they raise their heads again, by which time, new treatments will no doubt be around. Have a read of my bio (by clicking on my name or avatar). Please ask any questions.
Best wishes, David
Please remember that I am not medically trained and the above are my personal views.
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