prostate cancer message boards vs. the doctor. who ya gonna listen to?


A question (slightly amended for privacy) from a message board.

I am so happy to report that my husband’s bone scan, x-ray and cat scan all came back negative and the doctor feels the cancer is contained to him prostate.  I understand it could actually be a bit outside which won’t show up on any of these tests, but still this is great news for us.  Have been sitting on pins and needles til these results were it.

He will start treatment in Georgia the end of this month, likely hormone therapy and radiation.

I’ve read some bad side effects from hormone therapy, anyone do the radiation without it?

Gleason 9 (5+4) psa 1.54 T2c

Good question but is it best asked of other patients on a prostate cancer message board or of this person’s doctor who recommended this form of therapy? Use all the arrows in your quiver my friend.

Here’s a google I did on this question and I got several good articles, not the least of which from the PCF’s blog that addressed the very subject. Imagine that!

6 Replies to “prostate cancer message boards vs. the doctor. who ya gonna listen to?”

  1. Dr. McHugh,
    The internet message boards do, in the end, play a positive role – often raising questions average patients would never think of, often helping organize tangential thoughts – but they are not gospel and should never be taken at face value without additional verification. That said, one point that bears repeating over and over to any newly diagnosed prostate cancer patient is the extreme importance of “homework.” Before they were committing to any treatment plan, along with Dr. McHugh’s essential book, I would — were I a urologist — demand that my patients also purchased or borrowed the individual books by other leading doctors and professors i.e. Walsh, Scardino, Katz, and Chodak, to name but a few. Ideally, I would have each of my patients set aside several weeks to digest the pertinent information in these volumes before again meeting with me to arrive at final plan. After each patient has had a few weeks to do their own independent study true benefits can also be had from discussions with other who have already had their prostate cancer treated, as well as from reading the internet discussion boards. Yes, ignorance is bliss, but knowledge is power. It would seem wise for each urologist to have a solid reading list available, as well as perhaps a research “flow sheet” for their newly diagnosed cancer patients. Your thoughts?
    Jack Brown

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    1. I do agree and I like the idea of an research flow sheet. I use the term “use all the arrows in your quiver” and this I think makes your point. All men diagnosed with this cancer should be a “proactive prostate cancer patient.” Thanks for commenting. Ps…when I first started the social media thing and made a comment on a message board and they found out I was a doctor with a book and commented (as they barred me from the site), “another money grubbing doctor trying to get rich off of sick prostate cancer patients.” It was an eye opening experience for me. I do however see the benefit, just as you mentioned, of peer to peer discussions.

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  2. My flow sheet would be:-

    The first aim is to understand how aggressive cancer cells occur.

    The second aim is to cure cancer.

    The third aim is to cure the cancer patients mind.

    The real aim is to stop cancer occuring in the first place so progress should be measured by how close to or beyond this we get.

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  3. Keith and Dr. McHugh, thanks for reply, nice to know someone is listening. Keith if you ever start bottling whatever you have, sign me up for a couple of gallons! What an affirmation of life! I truly envy your zest for life- I find myself still in the gray gloomy atmosphere of diagnosis. After suffering from dysthymia for the better part of my life, that gray place is a place I need to avoid.
    Dr. McHugh, if I understand you correctly you’ll be speaking to Dr. Peters about gay sexual issues. If I’m wrong please disregard the following. I’ve researched the internet- I know sex changes after treatment. I know that there are no guaranties dealing with ED. It is a matter of wait and see, not only about recovery, but also,the amount of damage to internal tissue and nerves. I am aware that surgery affects you immediately and radiation takes longer. Know that libido diminishes with age. It is frustrating not being able to find information specific for gay men and their sex lives after treatment. Going behind the bedroom door is never easy, and I apologize to those of you who find this post upsetting and indelicate. I’m almost certain that this was a “difficult” area for all of you.( Not only to ask about, but to relearn. )

    I am trying to prepare for the wild and crazy trip that waits for me. I’m asking for directions and no one seems know where I’m going, how to get there or if I have even pack what I need. What I do know is that this is a one step at a time journey and I need to keep doing the next right thing.

    Thanks for help
    ken

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  4. I am responding to Ken.
    There is pentrative sex ‘Intercourse’ and non penetrative sex ‘Outercourse.’ When there is no possibility of intercourse irrespective of whether it is as a result of Erectile Dysfunction or other physical issues then the option is Outercourse.
    Outercourse could be masturbation, mutual masterbation and oral sex, to name a few options.
    In our online survey a response to one of the questions strongly indicated that orgasms were important to both parties with a mere 8% feeling it wasn’t important.
    Given that libidio isn’t an issue and the fact that orgasms are possible without an erection or without ejaculate it is completely feasible to maintain a vital, satisfactory sexual relationship. It means we go back to the early experimental days of our youth and have some fun.
    It is a matter of acceptance and not bringing negativity into the picture.
    We all need to start smelling the roses again and have some fun.

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