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Thread: Important survey

  1. #1
    Join Date
    May 2003
    Location
    liverpool uk
    Age
    40
    Posts
    167

    Important survey

    Hello All,

    If you have time could you try this important survey to help testicular cancer survivors?

    All welcome to have a look.


    http://www.surveymonkey.com/s/JWC8DGF
    remission from july 2003
    BEPx2
    artrail fibulation x2
    stage2 teratoma mixed seminona
    HRT testogel ongoing
    www.checkemlads.com uk testicular cancer

  2. #2
    Join Date
    Mar 2010
    Location
    Northern California
    Posts
    1,397
    I took a look at the survey, but really couldn't figure out how to choose an answer. The way that thing is worded just doesn't make sense to me.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

  3. #3
    Join Date
    Jul 2008
    Location
    Milton Keynes, England
    Age
    57
    Posts
    336
    I agree with Dave. The wording of the questions isn't that clear. I've completed the survey so hope that my answers make some sense. I know there are some issues with data protection in the UK but I would have though it to be useful to gather some information about the survivor if they were completing the survey. I'm sure I would have given different replies if I had been say under 30 or recently\planning to marry, just started a career, etc. Still, let's be positive. At least this shows that some UK research is being carried out which should help with support in the future.
    Jon
    Left orchiectomy May 2008, AFP 1600, βHCG 200and normal after 5 months (AFP4, βHCG<1)
    Non-Seminoma stage 1 - Under surveillance
    3 years on and still all clear

  4. #4
    Join Date
    May 2003
    Location
    liverpool uk
    Age
    40
    Posts
    167
    i struggled a bit!! but that normal for me but its the first time they are actually doing something about helping survivors in the UK so thats for doing it guys/girls
    remission from july 2003
    BEPx2
    artrail fibulation x2
    stage2 teratoma mixed seminona
    HRT testogel ongoing
    www.checkemlads.com uk testicular cancer

  5. #5
    Join Date
    Jul 2008
    Location
    Australia
    Posts
    1,194
    The question and answer selections are a bit odd - does not look like its been put together by a Statistician - I aborted the thing.

    Cheers
    >>>>>>>>>
    TC1: May 2001 / Right orchiectomy / seminoma stage 1 / Radiation
    TC2: July 2008 / Left orchiectomy / seminoma stage 1 / X2 Prostheses / Reandron (long term Testosterone injections)

  6. #6
    Join Date
    Mar 2010
    Location
    Northern California
    Posts
    1,397
    [QUOTE=Kiwi;140189]The question and answer selections are a bit odd - does not look like its been put together by a Statistician - I aborted the thing.

    Cheers[/QUOTE
    Agreed, I could not decide if the survey was just poorly done or carefully designed to produce a certain predetermined outcome. In either case I have no interest in participating.

    Dave
    Jan, 1975: Right I/O, followed by RPLND
    Dec, 2009: Left I/O, followed by 3xBEP

  7. #7
    Join Date
    Aug 2010
    Location
    England
    Posts
    295
    Not wanting to continue the downward trend... (but I think I am going to - sorry!). But I found it near impossible to answer the questions - because they didn't relate to me.

    Straight from the off question one "Testicular cancer survivors do not understand their rights and how to access financial advice/support" I can't answer because I haven't got a clue about (other) TC survivors, I know about me - but that's not what is being asked. At best the question(s) seem to be badly worded generalisation, so can't be sensibly answered.

    And that's a shame for two reasons: 1 - I am (hopefully) a TC survivor, and 2 - many years ago I did my degree at Cov Poly before it became a university (those were the days... sigh).
    http://doublezeroami.blogspot.com

    Feb/Mar 2009: RHS - Seminoma (with Radio Therapy)
    Mar 2010: LHS - Embryonal carcinoma (with Surveillance)
    Aug 2010: Relapse, awaiting 3 BEP
    1st Sep 2010 - 29th Oct: three cycles of BEP.
    6th Dec 2010: Scan results: lymph node shrunk from 2.4 -> 1.2cm
    Dec 2010: Back on surveillance.
    13 June 2011: ALL CLEAR!

  8. #8
    Join Date
    Mar 2006
    Location
    Somerset, England
    Age
    46
    Posts
    2,822
    I too found the questions impossible to answer in a plausible way. I had the same frustration as DZ - the questions are worded to ask about what the attitudes and experiences of 'testicular cancer patients' are. As an individual I can't answer questions that call for knowledge of such a diverse group of people. I started the survey, but didn't complete it.

    Are you able to feed back any comments, Phil? I'd be happy to take part once things are clarified.
    Nick

    Embryonal Carcinoma; Seminoma. Marker negative.
    August 2001: Right I/O .
    August - December 2001: Surveillance .
    December 2001: Relapse - Stage III. Mets in lymph nodes and lung.
    December 2001 - March 2002: 3xBEP .
    Complications: Neutropaenic sepsis during cycles 1 & 3. I/V antibiotics and isolation.

    March 2012 - Ten years since finishing chemo.

    Survivorship Blog is here

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