Daryl Gates former LAPD Chief dies of bladder cancer

14 years 11 hours ago - 13 years 11 months ago #31474 by Cynthia
The last few days there has been a lot written about bladder cancer advocacy on our forum. This site is done for survivors and the people that care about them by the American Bladder Cancer Society. Providing support through an online community is only a part of our mission. If you have not had a chance read our mission statement.

Our Mission Statement

bladdercancersupport.org/index.php?option=com_content&view=article&id=1&Itemid=87

The American Bladder Cancer was started by a group of survivors and caregivers out of the same frustrations you have voiced. We are still frustrated our resources only allow us to do so much and our first priority was this website. The building and maintainace of this site represents tens of thousands of dollars and is an ongoing endeavor. We are now to the place we can look at the next part of our goals. We are seeking grant money and donation to support advocacy and awareness work. We firmly believe as you do that knowledge of bladder cancer can save lives. If you look at our logo you will see a small flower and the words Forget Us Not for we believe that bladder cancer is the forgotten cancer. Bladder cancer is a very misunderstood cancer by even the majority of the medical community. The only real money going into research for bladder cancer is by medical/pharmaceutical companies. Bladder cancer is the most expensive cancer to treat and as sad as that is it is the only reason there is as much research as there is. It is still one cancer no one wants to talk about and we do not have a famous voice to add to ours. The need for awareness of bladder cancer is critical every day there is more people that are diagnosed at an advanced stage that could have been spared that if they had even basic knowledge of bladder cancer and its symptoms.

As Pat pointed out there is power in numbers and the Komen foundation is indeed a case in point where one voice can grow too many and become heard. The dream of the American Bladder Cancer Society is to become that voice for bladder cancer. We hear your frustration and invite you to join us in your own way to reach our goals. If grant writing is your thing let me know if fundraising is your thing let me know. If you have an idea and need help achieving it let me know. No one wants to hear this but to achieve our goals we need money. If you work for a company who gives to non profits such as our let me know. If someone asks you what they can do to help tell them to do a fundraiser it does not matter if it is a small one or a big one, enough golf tournaments, runs and yard sales will save lives.

We can talk about what should be done forever but it will not get the job done. The American Bladder Cancer Society a 501(c)(3) nonprofit organization has worked had to get the framework in place to go forward and give bladder cancers voice a home. We would like to ask you to move past your frustration and add your voice to ours until there are so many that we have to be heard. My contact information follows or just click the contact us link in the main menu.

Thanks for listening to my rant.

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

Please Log in or Create an account to join the conversation.

14 years 20 hours ago #31462 by Melodie
It would seem to me that a cheap home testing kit could be provided...like when you do the stool test and then send in or bring in the results to the lab...I think the key is education and making testing easier...and good role models like those on the forum. As for my checkup with the urologist, it was less painful than some of my pap smears have been.

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

Please Log in or Create an account to join the conversation.

14 years 21 hours ago #31461 by mmc
You have a good point George. Colon and rectal cancer is way higher on the list but you don't hear much about that either. However, the doc does check for that every year...

Maybe the best investment is good markers or a cheaper cytology test. Then it could be moreroutine.

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...

Please Log in or Create an account to join the conversation.

14 years 22 hours ago #31460 by GKLINE
I know that Bladder cancer does not have a sexy ring to it, but I am with Mike on this one. I would rather have had a "curable" cancer. I think the quick action of my Dr. saved my life.
If people don't immediately know what bladder cancer is, they know about cancer and "most" are glad I survived.

I don't know if Bladder cancer needs a RANT for recognition, but it could use a little bit more of a red flag for doctors. they should be ready to look for the signs and be aware of the disease.
My Dr. gives me a urine test every visit for the past 15 years... mostly looking for sugar, I assume, but he is still looking for small blood content too. So I had an immediate red flag.

I really don't care if bladder cancer gets the advertising award or a red ribbon, worn on my lapel. I just want people to recognize the need for a Dr. visit and the need to be tested.

Maybe because it is an ugly form(affecting a waste area) of cancer, it doesn't get publicised as much as breast cancer. But as I look at the survival rates, I would rather NOT be in that top 10 list, thank you very much.

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]

Please Log in or Create an account to join the conversation.

14 years 1 day ago - 14 years 1 day ago #31441 by mmc
I'm not so sure that the more "famous" cancers have any better outcomes than bladder cancer.

While more fame may bring more money and it may get people to get into a urologist sooner, it is most likely the latter that will save lives. If GPs recognize the signs of bladder cancer and people get into treatment sooner, they have better outcomes.

Breast cancer and prostate cancer have much higher incidences than bladder cancer so it kind of makes sense that they are more well known.

Here are incidence rates (2006):


and here are death rates (2006):


As you can see, bladder cancer is number 6 in the U.S. for incidences but it is not in the top ten for deaths. That's a good thing for us. :)

I'd rather have a not as famous cancer and get cured from it than a famous cancer that still winds up killing me. The fancy ribbons and t-shirts and walkathons, runathons, telethons are not cure-a-thons. I think my RC surgery was a cure-a-thon for me.

Other than support groups such as this one, the best investment with the highest return would be in educating GPs to recognize the signs of bladder cancer and get people to urologists who can then diagnosis it then refer the patients to the top bladder cancer hospitals.

Oh yeah....everyone needs to quit smoking also. That has the potential to reduce the new cases of bladder cancer by 60-70%.


Mike :)

NOTE: If you click on the charts, they get bigger and easier to read.

Here is my source for the charts: apps.nccd.cdc.gov/uscs/toptencancers.aspx

Another note: The source is CDC (a government agency) and the data is only updated to 2006 and it is now 2010. Anybody STILL think government run health care is going to be better????

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...
Attachments:

Please Log in or Create an account to join the conversation.

14 years 2 days ago #31436 by Patricia
Well there's your answer Lori...RANT. Why do you suppose breast cancer finally got the recognition it deserved..it was getting nowhere until the women stood up and RANTED. Figures are still dismal. Funds are great but there are so many grants out there that lead to nowhere. The best thing thats happened for breast cancer is better equipment for imaging..digital along with ultrasound...better training for needle biopsies..and money for women to go into the field. Most of the top cancer surgeons are women now...take a look at Memorial Sloan...all female..one male. But we're still dying.
I have found that the top centers devoted to bladder cancer are so committed to the cause and outcomes are exceptional when caught early. Too many people ignore the symptoms or their GP's don't know the symptoms. How many GP's do a urine test anymore?? Mine sure doesn't. My Ob/GYN does however.
OH yeah..men don't see a ob/gyn.....and my guess is they would rather have a root canal then go for a cystoscopy and probably wait longer. Women on the other hand try to get someones attention and get pretty much ignored...there's where the ranting comes in handy. Gross hematuria they will acknowledge but a few red cells, discolored urine, repeat UTI's you get put on Cipro until you RANT.
So on one hand for the year 2009
The American Cancer Society's most recent estimates for breast cancer in the United States are for 2009:

about 192,370 new cases of invasive breast cancer will be diagnosed in women
about 62,280 new cases of carcinoma in situ (CIS) will be diagnosed (CIS is non-invasive and is the earliest form of breast cancer).
about 40,170 women will die from breast cancer

Now for bladder cancer in 2009 you have
Estimated new cases and deaths from bladder cancer in the United States in 2009:



New cases: 70,980

Deaths: 14,330

So you have 254,650 people with breast cancer and 70,980 for bladder cancer.
I think they should have RANTED don't you. We're a smaller number but we can make some noise...Got any ideas?
Pat...who made it through T2 bladder cancer and am now in that 192,370 with invasive breast cancer that may or may not make it. At least i knew where my odds were best with the bladder cancer whereas i did not have much of a clue with breast cancer.....its still a roll of the dice.

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne