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Thread: A replacement word for cancer

  1. #1

    A replacement word for cancer

    I posted the following on the ProstateCancerUK forum (I am in the UK) to see what response I would get. It proved interesting as to how some managers support their staff and others either block it out or ignore it. Is it the word Cancer that causes a problem? I wondered how my brothers in the US felt they were treated.

    I was wondering of the word cancer has lost its meaning, tell anyone you have cancer and they seem to have preconceived ideas and prejudices. They often fail to recognise that this is a disease like any other with very variable outcomes.

    My experience is that I was diagnosed with PC and prior & post op not one of my managers at work have asked how I am, and want to really know the answer (you can sense they want to hear "I'm OK now thanks"), however three of my suppliers have called me and wanted to talk, ask questions and listen and 4 colleagues from work show interest. I do not blame my managers or the other work colleagues, as my wife says they probably don't know what to say. This is where we need to either educate people to really ask how we are or if the word cancer is stopping them, we come up with a new one.

    Interestingly I have put two posters up regarding PC and a note from me giving some statistics and saying that if anyone wants to talk then I am always available. There are over 100 men of all ages work in my company and not one person has approached to find out more. Are all men ostriches really?

    Sorry I am rambling a bit now.

    Maybe this is just my flight of fancy, but I wondered how your colleagues, managers and even friends reacted to the word and the disease.


    Tony

  2. #2
    Administrator Top User ChemoMan's Avatar
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    I wondered how my brothers in the US felt they were treated.
    This is an international forum. I am from Australia.
    Is it the word Cancer that causes a problem?
    No it's the disease that carries the stigma not the word. You can change the word to anything you want and the stigma from the disease will follow.

    People really don't know what to say. Your wife is right. To talk to someone with cancer about their disease is really too much for most to bear. Your story is a common one that has been told here many times. The other thing is that a lot of people really don't care after all why should they care about someone they hardly know? This is probably the reason no one responded to your poster. It hurts more when friends or family don't bother to call but as we say around here cancer always finds out who your real friends are, one of the silver linings to the dark cloud that is cancer.

    Anyway welcome to our international forum and good luck
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  3. #3
    Sorry ChemoMan

    I saw so many US responses I assumed it was a US forum, stupid really when I am posting from the UK, Doh.

  4. #4
    Administrator Top User ChemoMan's Avatar
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    No need to say sorry

    While the bulk of our members are from the USA we have a sizable contingent of Australians and Brits. We also have New Zealander's and Europeans as well as people from various Asian counties posting here regularly. My apologies to any nationalities i have missed

    I see you have posted 11 times so my welcome is rather late in coming, but it is genuine none the less. All the best and as we say in Oz catcha ron.
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  5. #5
    Administrator Top User Didee's Avatar
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    I also like to look at it from another angle..when we heard about others with cancer before we had it.
    What were our reactions? Did we want to know the nitty gritty? Did we continue with them as normal or did we back away, not sure what to do so we justified it by thinking that by saying or doing nothing at least we weren't making things worse as we just might add to their misery by talking about it? Did we step up to the plate, maintain normal contact, sit back and hope like heck there would be good news but never instigateing contact?

    Some people can not and do not want to confront their own mortality so they block it out until they, or someone they love faces it. They then and only then can see what needs there really are and how what they perceived to be the right thing either was, or was not right, depending on their outlook.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  6. #6
    Moderator Top User HighlanderCFH's Avatar
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    Didee, you bring up some good points.

    When I'm talking with someone and they mention that they, or someone close to them, have cancer -- the wish to give them some comforting words immediately comes into my mind. But we can never know what the right thing to say might be because everyone reacts differently. Also, some cancers can be dealt with while others are truly bad news -- and, unless we directly ask, there is no way to know what to say.

    If someone has lung cancer, or cancer of the pancreas, etc., it means a very tough road ahead. I found that, in the case of prostate cancer, many people are of the thought that it's only a nuisance disease that can easily be dealt with "these days." Most people do not realize that there are varying types of PC, some of which ARE relatively easily dealt with while others are more difficult.

    In any case, the desire to find some combination of words that makes a person feel better is very strong in me and most others in this forum.

    Hey Tony, welcome to the forum. Glad to have you!

    Some people may ask how a person is doing in hopes of hearing good news. Others may truly care, but do not ask because they are afraid they may be bringing up thoughts that the person may be trying to avoid. It's a tough call either way, I guess.

    Looking forward to hearing from you again,
    Chuck
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Eight annual post-op exams 2012 through 2019: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  7. #7
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    Quote Originally Posted by ChemoMan View Post
    No need to say sorry

    While the bulk of our members are from the USA we have a sizable contingent of Australians and Brits. We also have New Zealander's and Europeans as well as people from various Asian counties posting here regularly. My apologies to any nationalities i have missed

    I see you have posted 11 times so my welcome is rather late in coming, but it is genuine none the less. All the best and as we say in Oz catcha ron.
    Don't forget little old Canada!
    Age 55
    PSA 5.4 (Nov 2012)
    Prostate Biopsy Feb 22/13 11 cores taken 4 positive
    Gleason 3+3
    retropubic Radical Prostatectomy April 23/13
    Post Op Pathology Gleason 3+4 (7) involving 30% of prostate
    29 gram, 4x3.9x3 cm
    6 benign lymph nodes negative for metastatic malignancy
    Post op PSA <.01

  8. #8
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    When I first found out that I had PC, I, of course, first told friends and family, but then I told EVERYONE at work. (We have 20 employees) I was open about my diagnosis, treatment options, and on going "issues", so I have not really experienced people "stepping back". As time goes by, things have got back to "normal" at work, and now it's only occasionally that someone asks about it. I think being proactive, and openly discussing it yourself puts people at ease, let's them know you are approachable, and can show them that it's not a "taboo" subject. A bunch of friends even threw me a pre-surgery dinner a couple of days before my surgery. Great food, lot's of wine and beer..... but I was on a damn liquid diet prior to my surgery!!
    Age 55
    PSA 5.4 (Nov 2012)
    Prostate Biopsy Feb 22/13 11 cores taken 4 positive
    Gleason 3+3
    retropubic Radical Prostatectomy April 23/13
    Post Op Pathology Gleason 3+4 (7) involving 30% of prostate
    29 gram, 4x3.9x3 cm
    6 benign lymph nodes negative for metastatic malignancy
    Post op PSA <.01

  9. #9
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    Being newly diagnosed and having to tell my friends, family and co-workers I can understand, to make matters worse I just started a new, great job 2 months ago.

    My family has been great, my wife's sisters have been great. Friends, the couple true close friends that I have are great, they know me well enough to understand how my twisted brain and sense of humor works. Those friends who are not so close have pulled away a little bit. Most of this I feel is due to my age. Being only 38 and having friends of similar age, it's really hard for them to understand. Most of them have never had to deal with something like this, so I try to cut them some slack.

    Co-workers that I have told (pretty much 6-8 people in my dept) have been OK, they kinda just pretend nothing is wrong, but then again I don't really know these people yet.
    I think, as was mentioned before, that most people just don't know what to say. For many the word "cancer" conjurers up images of chemo patents and they think you are going to die.

    Men as a rule are very hesitant to talk to each other about health issues, so it's of no real surprise to me that people act a little "funny". For me, I am on a mission to get at least my small group of friends and family to start getting at least a PSA done early. If I had not had an issue with urinating and got a PSA test done, I would not have had a chance.
    38 y/o
    Initial PSA of 11.8 on 5/15
    Retest of PSA 9.8 on 6/17
    Biopsy on 7/3 12 of 12 cores positive, Gleason 3+4 with some cores showing 4+3
    CT scan negative
    Bone scan negative
    Surgery scheduled with Dr. William Catalona, Northwestern University Chicago 8/13/13
    Post surgery path report showed tumor went outside prostate on one side, seminal vesticles involved on one side.
    Lymph nodes showed no involvement
    Upgraded to 4+3 Gleason

 

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