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  • How did a popularity contest become a part of cancer survivorship?

    Posted by Cynthia on November 7, 2009 at 12:38 am

    ** This thread discusses the content article: How did a popularity contest become a part of cancer survivorship? **

    As we come out of October I have something to get off my chest. And please note I support breast cancer advocacy and do not begrudge it anything. But it is hard having an unpopular cancer, there I said it. I remember standing in a hotel room in Boston pretty beat up from chemotherapy as I watched a lady on TV a breast cancer survivor with a group of others getting gift baskets and a spa day celebrating bc awareness month. I was having trouble getting good information and forget a support group; I didn’t even know another woman with bladder cancer. And I remember wondering why their tragedy was more important than mine? Was it because my cancer was in an ugly part of the body? Was it because theirs was sexy and mine was about urination and no one wanted to hear about that? Would I be any less dead if it took me? Was I not as good of a person or less worthy of life?Would it leave me with less scars? How dare I get an unfashionable cancer?

    The part that really gets me is not the fact that it has become a commercial event. This year I saw products for blc that did not even bother to claim they were giving anything back to the cause. No the thing that really worries me is have people became cancer fatigued? Are they exposed so much that they look at it but no longer see it? Where does this leave the bladder cancer cause? Here is a cancer killing more woman than cervical cancer every year in the US, and the question is are people listening to the message anymore? If that is the case we have a bigger job ahead of us that the huge one we already know about getting the word out.

    As for myself I will look for the bright side of October. I do not have to wear and look at bladder cancers color orange for a solid month, orange is not my color it does nothing for me. And like a Charlie Brown cartoon I will wait for the great orange pumpkin mobile to arrive someday and to glide me off to a spa day as I look through my gift basket.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
    Cynthia replied 15 years, 1 month ago 11 Members · 20 Replies
  • 20 Replies
  • cynthia's avatar

    cynthia

    Administrator
    December 30, 2009 at 2:37 pm

    That was the point of this blog, there are no “cool cancers”, they all hold the same potential for suffering. I have received some flak for doing this blog some have felt it was insensitive to people with breast cancer. Nothing could be further from the truth I have lost people I love to breast cancer it is a monster as is any cancer there are no good or better cancers. But having said that I am a bladder cancer advocate and you would have to walk in my shoes to understand my frustration. People are dying of ignorance because they do not know the symptoms of bladder cancer and here are a few things I have heard over the years, I can send you more if you like.

    From an advertizing person “Bladder cancer isn’t sexy enough you have to find a hook” (You think you were shocked by cancer being cool try the sexy angle)

    When asking at the top national cancer organization if they had a flyer for bladder cancer I was told “We only do them for the major cancers.” (Imagine the shock when I pointed out that bladder cancer was the fifth most prevalent cancer in men according to their own statistics.)

    We live in a society that spin is all in the press and certain cancers have received the lion’s share of said press for some time now for differing reasons. The good news is that the powers that be have made the realization that because of the weight put on a few cancers that others are now under served. It is our job to see that the facts become heard so that lives will be saved and the day will come that needless suffering is a thing of the past due to ignorance about bladder cancer by the general public. And hopefully with that awareness much needed money will go to more research into bladder cancer treatment and survivors issues.


    Cynthia Kinsella
    T2 g3 CIS 8/04
    Clinical Trial
    Chemotherapy & Radiation 10/04-12/04
    Chemotherapy 3/05-5/05
    BCG 9/05-1-06
    RC w/umbilical Indiana pouch 5/06
    Left Nephrectomy 1/09
    President American Bladder Cancer Society
  • jeff-f's avatar

    jeff-f

    Member
    December 30, 2009 at 6:41 am

    There is ‘cool cancer’ and ‘uncool cancer’. I have now heard everything!


    BC diagnosed 01/2007
    Cystoscopes and Miomyacin in 2007
    R/C ilial conduit 04/27/2008
  • 's avatar

    Guest
    November 22, 2009 at 10:33 pm

    I know what you’re saying Warren but how they have progressed over the past 10yrs. When i was younger i always had a lot of gray areas as they called them as i had lots of fibrous tissue. But the mammogram combined with the ultrasound really picks up the jagged edged cancer suspicious ones..at least they sure picked up mine which was under 1mm. The MRI’s are a waste with the younger gals for the very reason i stated before..the fibrous tissue will also pick up the dye and create a lot of false positives. And only designated breast cancer MRI’s should be used anyway which only a few select university and cancer centers have. Other places use the regular MRI and try to use that…doesn’t work.
    Its really a step backwards as the younger gals who get breast cancer have a much worse prognosis. I’ll bet there will be some flack on this one!
    Pat

  • wsilberstein's avatar

    wsilberstein

    Member
    November 22, 2009 at 8:37 pm

    New guidelines of this sort aim at cutting down on false positives and unnecessary procedures. Unfortunately, the insurance industry jumps on anything that cuts down on paid procedures as a standard of care.


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • 's avatar

    Guest
    November 19, 2009 at 11:07 pm

    Well i suspect to make a cancer popular you have to do a bit of yelling and screaming…..women are pretty good at that. The guys would rather not discuss it in general.
    An estimated 192,370 new cases of invasive breast cancer will occur among women in the United States during 2009
    and about 45,000 will die of it.
    So good for the women who have made a difference. Or perhaps i should say are trying to make a difference.
    They still don’t know if they have margins when they do a lumpectomy. You can still get breast cancer back even with a mastectomy. Not every surgeon knows how to find the sentenel node. Somehow i think that should be a priority and not pretty pink baskets and makeup and hair…and by the way, i have not received a pink basket yet.
    And new guidelines for mammography have just changed unless its familial
    In a departure from past recommendations on breast cancer screening, new expert advice says that most women should not start mammograms before age 50, and it’s best for the tests to come every two years. These new recommendations come from the U.S. Preventive Services Task Force. This is the most influential group that provides preventive care guidelines for doctors. The new guidelines are the first that this group has issued on breast cancer screening since 2002.
    VERY STUPID!

    Pat

  • gkline's avatar

    gkline

    Member
    November 13, 2009 at 2:26 pm

    Very well said Mike, as usual, you were very thoughtful.

    I did have an interesting talk with a very old friend of the family last week. (He came to see me and ask about my father. Hell, he drove past my fathers house to see me. I said “Why don’t you ask HIM?” It seems that the my fathers generation is embarassed that they are getting older and have health problems. So they sit at home rather than socialize. They don’t want their friends to see them falling apart.)
    During this conversation, ED, told me that having cancer 40 years ago was a family embarassment. His mother died from cancer and his father would never let ANYone speak of it. it was as if the disease was a black mark on the family. ED could not believe I talked about it so publicly, and said my father was quite mortified that the town knew about it.
    From what I can see, there are many form of cancer….They are ALL Ugly. So, Mike, I like the CANCER SCHMANSER idea. Its all bad. We don’t need to pick up sides of the cancer battle. We’re all on the same side.

    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • mmc's avatar

    mmc

    Member
    November 13, 2009 at 12:48 pm

    I certainly agree that it can be frustrating for someone so committed to advocacy of one type of cancer to see how darn successful others have managed to be with a different kind of cancer. Absolutely 100% of my being agrees with this one.
    Somewhere back a billion years ago though people were probably trying to advocate for breast cancer and prostate cancer and they had frustrations because nobody wanted to hear about it. Even now, almost all of the advocacy in breast cancer is all about women. Pink ribbons and what not…

    On the other hand, I’m not sure that anyone who gets a popular cancer as opposed to an unpopular one is any better off.

    Can’t say I’d rather have had breast cancer or prostate cancer instead of bladder cancer.

    Actually, given the choice, I’d probably pick bladder cancer over those others. It’s very treatable if caught early.
    Granted, a lot more work needs to be done to get women diagnosed earlier and a lot of other things.

    Breast cancer has a bit of inverse to bladder cancer with regard to men and women. Men are typically diagnosed very late have a higher statistical chance of dying from it than women. Women certainly get it more (even larger ratio than bladder cancer men/women) but men get it too. Like I said, some of the ads even make it exclusively about the “woman club” and completely leave men out of the picture.

    Getting those mammograms every year for women certainly saves a heck of a lot of lives and it is now typically caught much sooner that days of old. When my mother was diagnosed with breast cancer back some 25 years ago, they said she probably had it for 10 years or so and it was pretty much too late for her. She died at 47. I’m pretty darn glad that they have come a long way and you can bet my daughter gets checked every year (starting at an early age) and that her daughters will as well.

    Advocacy is a tough job and my hat is off to all of you who are out there getting the word out. You have been and ARE saving lives. Whether you realize it or not, you are probably savings lives almost every single day! Just look at the number of guests and views on this site. People are learning and acting on the information they learn here and their lives are being saved because of what you do. What a gift you are giving to the world.

    I’d be willing to bet that no matter what kind of cancer someone gets, they would be frustrated that more research isn’t done yet and that not enough is known yet and better outcomes would be available to them “if only”…

    There are all sorts of diseases out there that kill people and since we have/had bladder cancer, it is certainly top of mind for us. I’ll bet there are a lot less popular diseases though and those folks are feeling the same thing. They are saying things like “Cancer shmancer! Why does the medical research all go to cancer and not to my disease!”.

    I kind of wonder sometimes if people who do advocacy for different kinds of cancers (or other diseases) shouldn’t get together at some big conference and share what works and what doesn’t. Seems like a lot of the same kinds of things are done for each and sharing that knowledge would benefit everyone.

    Thank you from the bottom of my heart for all you advocates do!!!

    Mike


    Age 54
    10/31/06 dx CIS (TisG3) non-invasive (at 47)
    9/19/08 TURB/TUIP dx Invasive T2G3
    10/8/08 RC neobladder(at 49)
    2/15/13 T4G3N3M1 distant metastases(at 53)
    9/2013 finished chemo -cancer free again
    1/2014 ct scan results….distant mets
    2/2014 ct result…spread to liver, kidneys, and lymph system

    My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
  • gkline's avatar

    gkline

    Member
    November 12, 2009 at 10:32 pm

    Ok I am severly and rightly Shamed :( :(


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • wsilberstein's avatar

    wsilberstein

    Member
    November 11, 2009 at 11:14 pm

    Dear Evil Twin:
    Thank goodness my twin isn’t evil since he’s my best friend… but on to the subject matter of your letter, which I realize was just musing out loud
    I’m sure there are some people working under grants who do anything they can to keep a grant going even when it doesn’t appear to be leading to answers; however, even these people realize that success leads to more grants.
    Much of the research is funded by companies looking to make a profit. If the researchers don’t come up with a big selling drug, there’s no profit in it for them. That’s hardly a perfect solution since it leads to rushing medications to market with incomplete analysis of the data.
    Finally, if a patient of mine needs 3 visits to my office to get better rather than 1, it does generate more income, but if that was my goal, it would be pretty transparent. There’s a reason my patients trust me. Just as I went into pediatrics with a genuine desire to take care of kids, most researchers want to make great discoveries. Every one of them would rather win the Nobel Prize than squeeze a few extra $$$ out of a grant.


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • gkline's avatar

    gkline

    Member
    November 11, 2009 at 10:08 pm

    My hope is; cancer research will FINALLY reach a conclusion and we will see a REAL cure for this. I wonder why the research goes on and cancer seems to find new ways of mutating.
    The cynic in me wonders if the money made in research is hindering the actual discovery. Think of the people who would be unemployed if a cure was found. Just one of the things that makes me go hmmmmmmmm.

    The evil twin of George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • thewifeagain's avatar

    thewifeagain

    Member
    November 10, 2009 at 1:31 am

    I was super suprised when I found a cancer awareness site earlier that sells a wide range of Cancer items and Bladder Cancer was about equally represented.


    Age 53 Currently
    Bladder Cancer Diagnosis October 2006 T1G3
    2011 Finally made it 6 month between Cystos
    8/22/2011 Cysto in the OR
    (BCG and BCG Maintenance over the years)
    Graduated to yearly Cystos
    Tumor found at first one year Cysto – TURBT 4/26/2013
    Kidney pain – CT scan 5/1/2013
  • wsilberstein's avatar

    wsilberstein

    Member
    November 9, 2009 at 12:54 pm

    If memory serves me, Hubert Humphrey had bladder cancer. And back then they were pinning the blame on artificial sweeteners. I remember thinking,”How can a person get bladder cancer?” Never heard of anyone since who had bladder cancer until I had it.


    -Warren
    TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
    Urethral stricture, urethroplasty 10/2009
    CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
    T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
    Incontinent. AUS implant 2/2014. AUS explant 5/2014
    Pediatrician
  • vgau's avatar

    vgau

    Member
    November 9, 2009 at 1:32 am

    It’s interesting because I have often just walked by when someone was collecting for cancer or said no when the clerk at the grocery store asked if I wanted to donate. This week I did both and thought of Pat as well.


    Dx 10/5 Non Invasive Papillary
  • melodie's avatar

    melodie

    Member
    November 9, 2009 at 12:41 am

    I wouldn’t wish cancer on anyone but you know, if someone famous got it that was willing to talk about it, like Oprah, all of a sudden everyone would know about it. Reminds me of when someone famous dies…it’s all over the news but when its one of us, little is published, and then it’s only by family or friends. Is any one life more or less signifcant than another’s?

    I don’t usually make a contribution to breast cancer but this week I did…in honor of you, dear Pat. Wishing you the best.


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • blb's avatar

    blb

    Member
    November 8, 2009 at 8:39 pm

    I too find it frustrating that so much “attention” is given to breast cancer. My workplace has always been very supportive of ANY cancer and survivors and for that I am very proud. However, I think most people don’t realize that women even get bladder cancer. After I was diagnosed, my first thought was “isn’t this what old men get” shows you how uneducated I was. I talk about my bladder cancer often and alot – I want to people to realize that we are out here fighting and will continue to fight until we are heard! :cheer: I love this site! Bobbi

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