41 Year Survivor Bladder Cancer

3 years 4 months ago #54726 by collegea
41 Year Survivor Bladder Cancer was created by collegea
I was diagnosed with bladder cancer 41 years ago when I was 23 years old. I was hiking in the Grand Canyon in Arizona and when I woke up one morning I had a drip of blood come out of my urine. It happened two mornings in a row. I called my parents in NYC and they told me to come home immediately. I was checked into a hospital and they ran tests. Last thing they did was give me a cystoscope. No one saw anything except a young intern. I had a microscopic cyst which they took out through special instruments without being cut up. It was a malignant cyst. I was cystoscoped every 3 months for 3 years, then every 4 months for the next 2 years. Year 5-10 I was cystoscoped every 6 months. Year 10 to year 15 I was cystoscoped once a year. After year 15, I was cystoscoped once every 2 years. After 35 years, I asked my Urologist why was I still being cystoscoped, and he said, " he didn't know why either." After that comment, I stopped being cystoscoped. It's been 6 years since I have been cystoscoped. I figured after 35 years of being checked with no recurrence, I was as safe as could be. They never gave me any medication, chemo or radiation. I was told at the age of 23 that my chances of non-recurrence we're less than one tenth of one percent. I was to young and to stupid at the time to worry. I lived my life carefree but dreaded the day I got cystoscoped. Deep down I wonder if I did the right thing after 35 years of not getting cystoscoped. Only G-d knows, I suppose. Wishing all of you a recovery like me. I didn't suffer because I was in the hospital one day and out the next making love to my girlfriend, who is now my wife.
The following user(s) said Thank You: Joanne2, DonnaD

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3 years 4 months ago #54729 by cltyxx
Replied by cltyxx on topic 41 Year Survivor Bladder Cancer
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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3 years 4 months ago #54730 by collegea
Replied by collegea on topic 41 Year Survivor Bladder Cancer
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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3 years 4 months ago - 3 years 4 months ago #54732 by collegea
Replied by collegea on topic 41 Year Survivor Bladder Cancer
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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3 years 4 months ago - 3 years 4 months ago #54733 by sara.anne
Replied by sara.anne on topic 41 Year Survivor Bladder Cancer
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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3 years 4 months ago - 3 years 4 months ago #54735 by collegea
Replied by collegea on topic 41 Year Survivor Bladder Cancer
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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