First post. 57yo male, had radical prostatectomy 5.5 years ago. I know that is considered young, but there is a deep family history of prostate cancer. Follow up radiation therapy was required and my PSA fell to its lowest level 2.5 years ago. Since then it has been rising exponentially. The reading itself is still very low (0.16) but it has gone up by the same amount in the past 6 months as in the previous 12 months. It only went up 50% in the 12 months preceding that. I have another follow up in 3 months and my radiotherapy oncologist and I agree that the reading will probably then be over 0.2, warranting a PET scan to see where the cells are. I am symptom free, but I do have the typical residual side effects of the original surgery and follow up treatment.
My reason for joining this community is to search for similar journeys that others have experienced, and to try and understand what might be in store for me.
I get that the next phase of my treatment will probably involve hormone treatment and I'm actually OK with the physical changes to my body that might occur as a result, but it would still be good to learn about other peoples experiences who have gone along a similar path.
G'day sch, thanks for replying.
I've never actually felt unwell! I'm still hoping to hear of other members experiences of hormone therapy for recurrent prostate cancer, to try and get my head around what might be in store for me.
So, I had a follow up appointment with my oncologist today after yet another blood test. My PSA has risen again, albeit marginally, from 0.16 to 0.19 over the past three months. Still going in the wrong direction! It is pretty obvious however that there are some residual cancer cells lurking somewhere.
I will now undergo a PET scan, even though at this low level there is still only a 50/50 chance of anything being detected, and have another follow up appointment within the next 3 weeks.
I had been preparing myself mentally for hormone therapy but apparently that is not something that might actually be happening soon. If cells are detected from the PET scan and it is confined to nodes, radiation to that area will be the applicable treatment. If nothing is detected, treatment will not begin yet. If cells are detected anywhere else, hormone treatment will probably begin.
I have done plenty of research over the past few months and even though I ended up realising that I had probably got way too far ahead of myself, my oncologist seemed to appreciate that we could talk in the same language regarding future treatment. I am a bit disappointed however that if the day comes that I do need hormone therapy, my preferred regime (based on the side effects that I most want to avoid) was dismissed as something "not normally done" and left at that. Interestingly though, he stated that PSA level is not the holus bolus when dealing with someone in my position - with a biochemical recurrence of prostate cancer.
My PET scan results came back as 'all clear' which is awesome news, but it doesn't satisfy me. I know that there are still some cancer cells doing their thing in their host/my body so it is only a matter of time before they are actually found and I can do something about it. In the meantime I will get 3-monthly blood tests for PSA and see how long it takes for my reading to double. Then I will go through the whole process again.
G'day folks, I didn't realise how long it had been since the last update!
My PSA is now up to 0.38, I had another PET scan in March that still didn't reveal anything, and I am getting closer and closer to hormone therapy, which is making me angry because of what is in store for me. I get a PSA blood test and see my oncologist every three months, but the appointment to discuss the results of the PET scan was an extra. It was with a stand-in and he gave the impression that hormone treatment was imminent. He even named the drug - Zoladex 10.8mg subcutaneous injections every 12 weeks. This annoyed me, not because it was going to be necessary, but because of the known side effects. Out of all the possible options, this is the one I most want to avoid.
I have seen my regular oncologist since then and because of the very small rise in PSA since my last blood test, he is comfortable with not starting treatment. Seems like he and his offsider are not on the same page. I understand that he is wanting to hold off with androgen deprivation hormone therapy for as long as possible because of the nasty side effects, but he is unwilling to consider alternatives such as anti-androgen monotherapy (which is common in other countries) that don't come with those side effects! That's the bit that makes me angry.
I hope I don't sound disparaging here, but it seems like because most victims of recurrent or advanced prostate cancer are elderly gentlemen sitting at home wearing cardigans and fluffy slippers and they are able to mitigate hot flushes and don't care about loss of libido, treatment with LHRH agonists such as Zoladex is used universally here even though it doesn't suit younger victims like myself who are still working full time in blue collar jobs, where it is not possible to mitigate hot flushes for example. Not to mention loss of libido. It also angers me that any side effects from ADT that I find intolerable, are expected to be dealt with by my GP. Handball!
Sorry for the rant.
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