Prostate Cancer Survivors

 

YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

 

 

This forum is for the discussion of anything to do with Prostate Cancer.
There are only four rules:

  • No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
  • No harvesting e-mail addresses for Spam;
  • No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
  • Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making

Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.

Since this is an International Forum, please specify your location in your post.

General Forum
Start a New Topic 
Author
Comment
View Entire Thread
Re: Re: Re: Re: Turp followed by radiation therapy, especially proton?

Hello from Indiana Terry,

Your different gleason scores of your pathology is interesting. Were these based off of the same slides or different biopsy's? Would you consider these reputable pathology labs where they were read? Here at home I actually have found out that there can be some variance even amongst the "best" labs.

I recently had three labs of reputation read my slides and now have three different opinions.

IU medical center Indianapolis, 3+3=6 2 of 10 cores cancer

Ourlabs, "Atypical" cells suspicious but not deformed enough for cancer diagnosis.

John Hopkins, 3+3=6 3 of ten cores sites cancer.

I have a feeling I am on the edge of PIN to cancer.

Basically IU Med and John Hopkins are in agreement.

Do you think another opinion would hurt?

I know we are amateurs at this game but I can tell you I have gotten some good "down to earth" information off of this wonderful site.

All the best,
Van

--- --- --- --- --- --- --- --- ---

Replying to:

William you say:

Yes I have thought about active surveillance but because of my age (52) I have not found a doctor who thought that it was a good idea.

I was 54 when I was diagnosed and it took me quite a while (and about 12 DREs) to find an oncologist who was honest enough to admit that ever day he learned something new about prostate cancer and in the circumstances he could find no real objection to my taking the WW route (as it was then known).

My circumstances were somewhat different to yours in that no one thought I had anything other than adenocarcinoma cells – no atypical cells for me - although there was a degree of difference of opinion as to the Gleason Score (I had four opinions with scores of 3+2=5: 3+3=6: 3+3=6: and 3+4=7). All of the first 12 doctors said I should have immediate treatment – usually surgery (failing which I might be expected to live 3 – 5 years: not much pressure there then!!).

What didn’t make sense to me then – and still doesn’t make sense is the fact that the majority of men who die from this disease are over 80 years of age. Of course there are some deaths at younger ages and it is very sad to read of them, but they are in the minority and are almost always associated with a diagnosis that didn’t match mine – or yours – very high Gleason Scores, rapid PSA doubling times and so on.

With this in mind, I reckoned that the chances of my dying of something else in the 30 years or so after diagnosis to the median age for prostate death was very much higher than the chances of my dying from PCa - bearing in mind that overall only about 3% of male deaths are from PCa. I almost demonstrated this theory a couple of years back when I hit the ER with a heart failure episode.

I’m not saying that everyone should agree with my view of the world, but I think it is a valid one to consider.

As to your urinary problems, there was a post on December 8 last year that might be useful for you to review. It refers to the three options, with links to appropriate information:

1. the surgical TURP (Trans Urethral Resection of the Prostate) – the most common of the procedures that is often referred to as a rotor rooter job

2. TUMT (transurethral microwave thermotherapy of the prostate)

3. TUNA (transurethral needle ablation of the prostate)

The issue is a complex one that needs the advice of a well qualified professional rather than from us amateurs.

All the best

Terry in Australia

Re: Re: Re: Re: Re: Turp followed by radiation therapy, especially proton?

Indiana, huh. That’s one of the few US States I haven’t visited yet – hope I’ll make it one of these days.

As to your specific questions:

Were these based off of the same slides or different biopsy's? Same slides, same biopsy

Would you consider these reputable pathology labs where they were read? Initially they were read by the two best labs in Cape Town, South Africa, where I was living at the time. The third reading was from a recognised lab here in Australia and the final one from a so-called Centre of Excellence in the US. (Mind you they sent back another man’s slides to me – and never found mine, so I was never too sure that the score was mine or his.)

You say Here at home I actually have found out that there can be some variance even amongst the "best" labs. The ascertaining of the grades of atypical cells in the prostate is indeed a process which is subjective and therefore produces variable results.

Do you think another opinion would hurt? No, but it might confuse!

One of the issues about this disease is the labelling of a wide variety of conditions as “prostate cancer” What a number of well known doctors have said is that some of the 'cancers' diagnosed at present are not 'cancer' if we mean by that word a disease that will, untreated, continue to progress until it kills us. Dr Jonathan Oppenheimer says it better than I can on his BLOG In part he says:

It is time to reconcile the discrepancy of the term that pathologists assign to a microscopic finding to the historical and practical significance of that term. The most common significant finding made by contemporary pathologists on prostate biopsies cannot be adequately described by “tumor” (Greek: swelling), “cancer” (from the crab-like extension), or “malignant” (threatening to life or tending to metastasize). I propose the terms “prostatic tubular neogenesis” (creation of new epithelial tubes or acini) and “potentially malignant” to better describe the microscopic findings that we have in the past labeled “adenocarcinoma” “cancer” “tumor” and “malignant.”

Dr Christopher Logothetis put it this way in a talk to US-Too: One of the problems with prostate cancer is definition. They label it as a cancer, and they force us all to behave in a way that introduces us to a cascade of events that sends us to very morbid therapy. It's sort of like once that cancer label is put on there we are obligated to behave in a certain way, and its driven by physician beliefs and patient beliefs and frequently they don't have anything to do with reality.

Some time back cells with a Gleason Grade of 1 and 2 were labelled ‘prostate cancer” but this is no longer the case in the US, which is why you don’t see any Gleason Scores below 6. But of course in the period since that decision was made, there has been a so-called ‘migration’ of Gleason Grades and what would have been a Gleason Score of 5 (and not labelled as cancer ) previously is now a 6 (and labelled as a cancer). Similarly, of course the rather common or garden GS 6 tumours that were invariably associated with indolent disease are now labelled as GS 7 or even 8, making them appear to be much more dangerous and in need of immediate attention.

All of which makes for some confusion in the Strange Place that is the PCa World.

All the best

Terry in Australia

Re: Turp followed by radiation therapy, especially proton?

William, please read Terry's posts very carefully. His prognosis was far worse than yours, or mine was, and he watched and waited for many years.

I had TURP at age 60 during which a biopsy was done and small (insignificant?) cancer was found in approximately similar amounts to yours. I later had robotic prostatectomy which was not completely successful because of the prior TURP.

The TURP itself was expertly done and actually improved my sex life because it removed all inflamation caused by obstruction and the surgeon preserved ejaculation. But however good the TURP was it fouled up later surgery.

If, I stress IF, you do decide on treatment, you should seek a second opinion other than from a radiologist, since it MIGHT be better in that case to have the prostate removed, rather than first have it bored out and then have it hit with other treatment.

But my opinion is that if I were you I would explore every medical way of improving my flow rate without any intervention to treat the cancer yet (which might not even be cancer!) and without having a TURP yet. I would actively watch things by having DRE and sophisticated MRI and Ultra Sound scans and watching the PSA movement and trajectory.

I am a guy who has had a TURP and a prostatectomy, yet still has enough prostate left to produce 0.42 PSA. So after all that - I am actually still doing watchful waiting! My new uro, who is a leading HIFU expert in the UK, says he thinks this is what I could have been doing all along.

Good luck and take your time.

Ted from England

RETURN TO HOME PAGE LINKS