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Lorraine is a nurse specialist and sex therapist and volunteers here to answer your...
I have been reading the various posts on the prostate cancer site for some years! I was first diagnosed 10 years ago and I am now 91. I have had various treatments over this time (radiotherapy 18 months ago, but not chemotherapy), and tablets such as bicalutamide and Enzalutamide 120mg and monthly Prostap. PSA was 179.
Everything was stopped (except Prostap) in July last year when the oncologost said the growth had spread outside the prostate and nothing was working anymore and prognosis was a few short months or weeks!! so no further consultations. It is now end of April and, not only am I still here, I am better now than I have been in some considerable time. I have very little pain and take 2 paracetamol 3/4 times in the day, but they are getting less needed. I walk 1 mile in half an hour every day now for exercise but have little energy for much else - no gardening for example. My wife reminds me, however, that I am 91 so no sympathy there!. I do not know what is going on, but I have stopped caring. My own Doctor is "confounded" but tells me whatever I am doing to keep on.
I write this, not to brag, but to try to reassure all who suffer advanced metastatic prostate cancer, like me, that there are many different diagnoses and they are not always right. My advice is Keep Active, Keep Positive - not easy I know, and Keep Smiling. there can be a light at the end of the tunnel.
Just goes to show Ricardo, specialists not always right.
Perhaps your laid back attitude helped.
Hope things continue to go ok for you. I presume that u don't bother with Psa anymore.
Thanks Ricardo for a very encouraging post. We all need to hear good news stories at this time. I hope you keep going for a long time yet.
Keep well and stay safe.
Thanks Grundo. PSA ! What's that? I gave up worrying about the number a couple of years ago as I was told by the Consultant it was not particularly reliable and, in any case, mine was going up and down with the varied treatment I was being given. In fact I do not have anything anymore. No CT Scans, MR Scans and the other bitsof personal intrusion. That is possibly why I feel so much better.
Thanks for this Seamus47. You are much more active than me, but you are still a young man!! Have read your History and can only say,, Been there, Done that. All of it. Only difference for me is that the 3 monthly Prostap played havoc with my system so have settled for a monthly one. Now no side effects, Hot flushes etc. Keep Smiling and win the Regatta, if it ever gets rowed! This virus is creating too much aggro.
When I look back over the last 7 years , the worry of psa tests, sometimes every 3 months, biopsies, MRI etc, etc, I would say that you are in rather a good position Ricardo.
Although I wouldn't advocate this line of thinking for everyone, particularly people newly diagnosed, in your case , ignorance truly is bliss.
I value your post. I would not like everyone to get the impression that I do not value PSA readings. I understand that the Medics use it as a guide line and, certainly in my case, in most patients they use it to help determine the type and level of medication. However having been at 179 last July and now being so much better with no medication except Prostap I cannot help but think that there needs to be better methods. I know there is Gleason and I was very high on that also. One further bit, I have a retired Doctor as a friend and he tells me he has had patients with PSA much much higher than mine was. As you say it is the worry associated with PSA tests on a regular basis that causes patients to have concern. My heart goes out to all those going through it at present.
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