Do men on AS need their own support groups?


Howard Wolinsky is a long-time prostate cancer patient who has been on active surveillance (AS) since his diagnosis in 2010, when one of his doctors described him as a “poster child” for active surveillance.

In his latest article on the MedPage Today web site, Howard argues that AS patients have very different concerns and needs than “traditional” prostate cancer patients, who are dealing with the side effects of treatment or the trauma of knowing that their cancer has progressed to the point at which it is threatening their lives.

What do you think? Howard’s article is entitled, “When living with prostate cancer is the goal“. You can comment below or you can leave comments directly for Howard on the MedPage Today site.

The development of support group systems specifically for men on AS is a work in progress. Prostate Cancer International would like to think that we have taken a leadership position in providing such a service. If you are interested in joining our virtual, monthly AS support group, you just need to e-mail Jan Manarite and leave her a message asking if you can participate.

8 Responses

  1. No question in my mind that those on active surveillance have a very different set of concerns. I would put prostate cancer support groups into four primary categories:

    1. Those who may have prostate cancer and must monitor their status with blood tests, scans, and biopsies before a diagnosis.
    2. Those with low-grade prostate cancer who may qualify and/or opt for AS.
    3. Those who elected treatment, have been treated, presumably have been “cured”, and must/should monitor for a recurrence, but there is no recurrence yet.
    4. Those who have recurrent or advanced disease.

    I cannot think of any reason why there can’t be an infinite number of support groups if it results in a patient receiving needed support.

    Richard

  2. AnCan wholly supports Howard’s observations. For some time we have recognized that our AS/low/intermediate risk group does not fully meet the needs of AS patients.

    We also believe that the more groups that exist, the better we serve the prostate cancer community; we endorse all the other groups Howard cites. We are not in competition with any other virtual meetings; on the contrary, AnCan recognizes that more choices overcome time and logistic hurdles for those who need support.

    AnCan is now in active discussion to establish a monthly (or more often if demand justifies) AS-specific support group. If interested in adding your name to the mailing list, please advise us at info@ancan.org. We will keep you informed.

    In the interim, the AS/low/intermediate group meets on the second and fourth Mondays of each month at 8 pm EST; more info on http://www.ancan.org.

  3. Richard:

    (a) You missed a critical group who often need (and don’t always have anywhere to get it) … spouses/partners.

    (b) I can think of at least one good reason why “an infinite number” of support groups could be problematic. Who is going to run them?

  4. Sitemaster,

    As to your point (b), LOL: that’s why we have a Sitemaster! : – )

    Best regards,

    Richard

  5. Richard:

    And exactly how many hours do you think there are in my day? :O)

  6. Yes I am interested in a men’s support group.

  7. I completely agree that AS patients are a separate group from those who have received definitive treatment.

    I went to some prostate cancer support group meetings after I was first diagnosed with small amounts of Gleason 6 prostate cancer. This was some 10 years ago, before AS had become an accepted approach. The group was really trying to convince me to have a prostatectomy, something that did not make sense to me, and that the side effects were something that I could deal with. Prevailing attitudes toward AS and “the gold standard” of treatment started to change just a few years later. Thank goodness I was not intimidated. I’m still on AS and comfortable with it.

    It was apparent to me that AS and post-operative groups have vastly different needs. One group is trying to avoid side effects, the other trying to deal with them. It’s apples and oranges — plain and simple.

  8. With all Sitemaster provides, and from the number of hours I spend every day in research, it would appear he works a 36-hour day at the very least! My hope for those on AS is that they and their treating physicians are working very closely with each other to insure appropriate tests are administered and as timely needed so that the patient is not suddenly surprised by an elevation of PSA or a metastasis not anticipated. There are so many varieties of issues involved with different patients and their AS that a “support group” might just cause confusion or undue concern from what other AS patients are explaining/experiencing or indicating other AS patients should be following their lead.

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