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41 Year Survivor Bladder Cancer

10 months 5 days ago #54736 by sara.anne
As you may have heard, there are “lies, big lies, and statistics” I think that about 5% of all cancers are bladder cancers. It just isn’t a “popular” subject and people do not romanticize a bladder. And it takes a lot of money to really popularize a disease. In the case of breast cancer the Komens were fortunate enough to be able to devote a lot of money and a lot of effort into the fight.

When Cynthia was battling bladder cancer she discovered that there was practically nothing out there for patients. When she and Ed decided to do something about it, they realized that there was no way they could donate or raise enough money to support research, but they COULD offer help and support to patients like Cynthia and could share the knowledge she had learned.

Other patients and family caregivers have joined in the effort. We treasure our volunteer Forum monitors especially including Diane, George, Alan, Catherine, and Anita who try to see that everyone gets a reply and that things do not get out of hand. And some of you may remember Mike who was always ready with solid advice until he lost his battle with this horrid disease. It is people like Mike whose memory keeps us going.

As I mentioned earlier, our support comes entirely from small donations. Our Board has made the difficult decision not to accept or solicit money from commercial organizations which might compromise or bias the information we offer.

There is research going on that is making advances in the treatment of bladder cancer. The use of personalized immunotherapy is just one such area. Cynthia, Ed and I were fortunate to be invited to the National Cancer Institute a little over a year ago where we spent the day with some very impressive and dedicated medical scientists. So there IS lots of hope.

Sorry to have hijacked your thread, but as you can tell you hit a sensitive spot! Just hope that all patients can have 51 years and counting!,

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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10 months 5 days ago - 10 months 5 days ago #54735 by collegea
Isn't bladder cancer the 4th most popular cancer in the USA? There are other forms of cancer which are less popular than bladder cancer and they manage to raise funding close to 1M, such as Thyroid cancer. Ok, maybe it's not fair to compare apples with oranges, but I am still shocked that charitable contributions are this low. Is research at a standstill here? If not, why is funding so low?

Yes, the forum is a beautiful initiative and helpful to others.

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10 months 5 days ago - 10 months 5 days ago #54733 by sara.anne
Your story is fascinating. I have never heard of a bladder cancer referred to as a “cyst.” It usually presents like a mushroom on a small stalk, or in the case of carcinoma in situation (CIS) as a rash on the surface of the bladder.

Chemotherapy and radiation are usually only used when the tumor has metastasized outside the bladder

I really must respond to your comments about our American Bladder Cancer Society funding. We are a very small enterprise which currently focuses on our web presence, presenting answers to the many questions patients have with our information pages and the Forum where patients can share information and concerns. We are totally a volunteer organization with no paid staff. Most of our money goes to pay to keep the website up and running. Ed and Cynthia, our founders donate hours and hours to this as well as lots of $$$. Most of the donations we receive are small
From people who have been helped by the site or memorial donations from families and friends of some of our members who lost the battle,

We are a 501(c)(3) organization and all donations are tax deductible. Yes, we are NOT a huge professionally run organization, but a network of patients and family of patients who feel a need for this community.

Hope that you have found our efforts helpful!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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10 months 5 days ago - 10 months 5 days ago #54732 by collegea
I completely blocked the cancer from my mind and lived my life. My parents and girlfriend cried (now my wife) after they found out I had cancer. But since I never went through Chemo or radiation, I never felt like I went through the ordeal of cancer. I entered graduate school at Columbia University one month after I was told I had cancer and the microscopic cyst was removed from my bladder. I only thought about it every 3 months when I went for the Cisiscope. The Power of forgetfulness saved me. I got married a year later and my first of three children was born 10 months later. I was wrapped up in life. I loved life, my family and trusted Adonai so much I instinctively blocked the cancer out completely. I hardly suffered and only on the days I had to have the cisiscope. I learned to take one day at a time. I learned to smell the roses love and everything around me. Life is so precious. I wasn't going to allow this cancer to take away my innocence and zest for life. I am less than 3 months from my 65th birthday and I know Cancer kills and destroys.

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10 months 5 days ago #54730 by collegea
To be honest, I never even knew until today that chemotherapy and radiation were part of the treatment for bladder cancer. All I know is that I was hitchhiking across the country, climbing mountains and hiking the trails in all the national parks, with a back pack, sleeping bag, tent, fishing rod. The blood in my urine came out at Roaring Springs Campground, about 4 miles from the North Rim of the Grand Canyon. The head of the Urology Department and all the other Urologists couldn't find anything; it was Dr. Desposito, who was a young intern who spotted the microscopic cyst in my bladder. This all took place at Winthrop Hospital in Mineola, NY. All I knew is what they told me, that they took it out through special instruments. They didn't know if they got it all out. My Urologist said I would be going for Cisiscopes for the rest of my life. Well, I stopped those Cisiscopes after 35 years because my Urologist didn't know why I was still having them and to be honest, they hurt real bad, and it took me a couple of days to fully recover. For the first 15 years or so, I took the Sisiscopes without the so-called jell they put in your penis. I use to think when I was having these Sisiscopes, that I was being punished for not being a good person, to have the kind of pain in an area of my body that was designed for pain.
Anyway, I made a deal with Adonai (G-d the Father in Christian terms) that if my life was spared, I would donate half my income each year to charity and I have. And I got initially excited when I saw this site because I still have left over $5,960 from 2017 to give to a charity. I got excited and checked this charity, the American Bladder Cancer out on Charity Navigator. But they didn't rank the charity, since it was way to small. I don;t understand why there are so few revenues here. I try to give to charities that plow at least 92-93% of their money back into their charities. I don't know why the American Bladder Cancer Society takes in so few donations.

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10 months 5 days ago #54729 by cltyxx
Curious whether you were treated correctly or not... Was it really bladder cancer?

No matter what, it is great to be free after such a long time, :)

Good luck!

cltyxx

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