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I was interested when you posted your August Update when you said that you had been diagnosed with recurrent cancer by way of the Choline Pet-scan at Mayo Clinic,. If I hadn’t been a bit busy I might have dropped you a line for more information. So I’m glad I have the chance to do that now.
I was not aware that any scan could identify a lesion or a nodule as cancer. As I understood it, whilst the scan might identify an unusual structure, a biopsy was essential to ascertain the nature of this. It seems from what you have said that there was no additional biopsy, so presumably your rising PSA and the nodule were regarded as Recurrence on the same basis as 2+2=4? Perhaps you could share what you were told with us.
I am not sure if you subscribe to the Yana E-Letter, but if you don’t you might like to read the piece in the
OCTOBER ISSUE which has an interesting link to the May Scan – with the suggestion that this may show clearly if the disease is still confined within the prostate or not. If it is confined then Casodex, which is a systemic ADT (Androgen Deprivation Therapy) therapy would net be necessary and a focal cryotherapy might be better?
Yo Terry:
I studied and restudied Dr Kwon's C11 Choline Scan tape prior to heading for Mayo Clinic. As I understand it the value of this scan in particular is that it is sensitive only to prostate cancer cells whereever they may occur throughout the body.
Dr Kwon and his associates were convinced the Pet Scan revealed recurrent cancer limited to my prostate gland. A concmmitant MRI with endorectal coil and gadolinium enhancement confirmed this diagnosis.
While at Mayo I consulted with a radiologist who recommended brachytherapy.
While in his office this gentleman provided me with a research report that depicted outcomes using this approach-- outcomes that were unacceptable to me ( for details see my journal entry entitled "Options Considered and Rejected: Reality Sinks In" at http://protondon.blogspot.com/). Interestingly enough Terry this clinician wanted me to have a biopsy prior to the brachytherapy procedure.
As always Terry I appreciate your input and consistent support.
Regards Don O.
Thanks Don. I should have gone to your blog before posting. it certainly makes interesting reading, especially the latest reference to Snuffy Myers and his 1,000 ng/ml PSA comment. (anyone who wants to read more about this should go to Don's blog and specifically the piece titled Point and Counterpoint.
What you record is similar to the kind of conversation I had with myself earlier this year and which I recorded in my July update after a consulation with my new oncologist:
We had a good chat, as we do, and I was struck by his saying that his training was not to ‘follow the numbers’ but to treat each patient. He wondered if the focus on PSA was the best way to go, given the vagaries of the test and my good health and lack of any specific problems or symptoms. That resonated with me. Years ago I ‘met’ a doctor from Netherlands – Henk Scholten - in an Internet Forum. His message was
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He even visited the Yana Forum in March 2010 to repeat his message to a new audience.
I followed Henk’s view for a number of years and as I talked to Lim today, I realized I had been unduly influenced by the focus on PSA and my concern about Nemesis whacking me about the ear because of my hubris.
The biggest problem I have is that I hold the same views as Lim, as Henk, as my previous oncologist (who also said not to worry until you hit the hundreds or thousands in PSA levels, BUT.......can THEY be right and everyone else be wrong?
That was the case when I decided not to have conventional treatment after diagnosis in 1996. EVERYONE said I was nuts and I'd be dead shortly. But I'm not and there are some who now say that maybe I wasn't nuts after all and that my decision may be appropriate for other people. But that's my rational mind talking - emotionally it is something else.
I'll say this though. I have gone off Casodex and I believe I am seeing things more clearly now - I've certainly got more energy (although that may be Spring here down under!)
Oh! And I am sorry to say I don't altogether buy the 'prostate cancer only' choline scan outcome. Interesting though that the experts from UFPTI say it cannot be cancer cells in your gland because they radiated it so thoroughly. Hmmmm...as my dentist said when I asked him to explain how five of my teeth had decayed in a matter of months "That cannot happen." I pointed out that it had happened - he could see for himself. But he just denied it. Truly none so blind as those who will not see.
Good luck in your search for some good answers. I'm more inclined than eve to follow my instincts and try to forget about PSA tests.
Always a pleasure to hear from you Terry, and I do mean ALWAYS.
I suppose I could reread your blog, but I have you here, and others following this string may be interested in your response to the following two questions:
1. Were you on Casodex only for a while?
2. If so, would you not have done so knowing what you now know?
Just like everything else associated with Pca the choline scan is imperfect.
I like your new oncologist's philosophy. It may be worth a trip to Australia for a consult (Just idle chatter of course).
I am a little dence. I do not understand Hank Scholten's
message: %%bbCodeItem_1%%. From the context of your response it seems to mean don't over-focus on PSAs.
Thanks again for your thoughtful feedback.
Regards Don O.
Sorry about the bad coding for Henk's message, Don. I should have picked that up, although the link to the exchange worked! This is what the relevant part of his message was:
Forget about early detection, just wait for symptoms which in the huge majority will never arise and if so can be treated with either hormones or TURP.
Some tumors behave agressive from the early onset and are deadly, they cannot be cured by local therapies
As pointed in the article as well it is impossible with blind random biopsies to separate the tigers from pussycats, since the sample is not representative of whats really in there. Undergrading and overgrading are huge as compared with RP specimens
As to me. The brief summary of relevant issues is:
1. July 2007:PSA over 40. Nuclear bone scan showed an area 'suspicious for metastasis' on my spine. It is near some other old damage and although I thought it may well refer to that, the radiologist was adamant that was not the case and a second MRI some three months later showed, so he said, a signficant change in volume. So I started on Zoladex in Sept 2007. My PSA dropped nicely.
2. August 2008. I got my latest PSA result - 0.17 ng/ml - almost 12 years to the day of my initial diagnosis. I decided to stop Zoladex.
3. April 2010. My PSA had climbed steadily to 8.2 ng/ml - just 1.0 ng/ml more than it was back in 1996!! My oncologist said again "Don't worry - wait at least until it hits 40 again." But I chickened out and started Zoladex again in June 2010.
4. December 2011. My PSA had started to rise in January and was now 15.5. I had another nuclear bone scan (I hate those) which was clear! Was that because it was badly done (my view) or because the lesion had disappeared - doctrs' views!! After discussing a number of options I reluctantly accepted the (new) oncologist's advice to add Casodex to the medication.
5. The Casodex didn't do much - dropped PSA back to about 6 until July when it started rising, hitting 15.5 in October when we agreed to stop Casodex to see what that effect might be - it is a strange thing that stopping Casodex is sometimes associated with a drop in PSA.
With hindsight, would I add Casodex again? I don't think so because it turned out to do nothing really except possibly add marginally to the muddled thinking and other (minor) aspects of the consequences of ADT.
I am moving more to going it alone, as I did for the first ten years and doing what I feel is right for me (which may be supported by SOME doctors - a minority probably) as opposed to what the majority would want me to do. I remember reading years ago a quote that I found amusing "Views held by the majority are almost always wrong." Doesn't that sound hubristic:-)
