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

14 years 4 months ago #29454 by Cynthia
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

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14 years 4 months ago #29445 by Jeff F
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

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14 years 5 months ago #28873 by Patricia
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

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14 years 5 months ago #28869 by wsilberstein
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

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14 years 6 months ago #28852 by Patricia
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

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14 years 6 months ago - 14 years 6 months ago #28772 by GKLINE
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]

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