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9 years 8 months ago #34643 by Cynthia
Peri,

Please let everyone know that if they are a male they have a 1 in 28 and if female a 1 in 84 chance or having bladder cancer in their life times. It is the 4th most common cancer in men and this year in the USA as many woman will die of bladder cancer as cervical cancer. There is no cheap reliable test for it as yet and more research is needed but it is an undeserved cancer in need of resources. Knowing the signs and symptoms of bladder cancer can be truly a life saver. Also make them aware that smoking is linked to bladder cancer in many cases giving them another very good reason not to start or to stop.

I am a six year survivor of stage T2 gr3/4 bladder cancer diagnosed at 47. I was part of a clinical trial that tried to save my bladder using radiation and chemotherapy instead of surgery. It failed and I had a Radical Cystectomy and have a content diversion with a stoma in my naval known as an Indiana pouch that I use a catheter six to eight times a day to drain. I have some metabolic damage from the chemotherapy that leaves me with some chronic problems and have lost a kidney to scar tissue caused by the radiation. Having said that I have a very normal life for the most part with some adjustment. My husband and I plan to be certified for scuba diving this winter.

Another thing you might wish to share with your class mates is that that surviving cancer is not a case of being brave it is being smart. You just have to learn as much as you can about your cancer, seek the best treatment and do what you have to do to get through it.

I think it is wonderful that you were given this assignment and are taking so seriously. When you complete it if you would like we would love it if you would share it by posting it here if not we understand.

If you have not found it there is more information that might help you on our resource page.

http://www.bladdercancersupport.org/index.php?option=com_weblinks&view=categories&Itemid=103

Good luck with your assignment!

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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9 years 8 months ago #34636 by jj803
Hi Peri,

Mike did a great job on explaining the treatment for pT2 bladder cancer. In most of the world the treatment of choice is a radical cystectomy with extended pelvic lymph node dissection. For men this usually involves removal of the prostate as well and for women the female reproductive organs (uterus, fallopian tubes, and ovaries). Even with this treatment of those who undergo RC there is about a 50% 5 year survival, with most of the failures coming within the first two years. A fairly large percentage who are thought to be pT2 turn out to have a higher stage disease once their cystectomy is completed. As you may already know, bladder cancer is on average a disease of older men (3:1 M:F) and the most common risk factor is cigarette smoking. As far as life after cystectomy, it is definitely changed; but most of us find that we are capable of doing pretty much anything we could before and what we want to do. Most of us have periodic tests to make sure we remain cancer free for at least 5 years with the schedule and testing being somewhat variable. Those of us with "continent diversions" (neobladders and Indiana pouches) find that we must make sure that we completely empty our diversions periodically, including at night so many of us must set an alarm for every four hours. This is a small price to pay for your life, however. A fairly high percentage find that their sexual function is greatly altered as many men will have erectile dysfunction and ladies also can experience various difficulties after this surgery. As for myself, I am very physically active; including riding a bicycle 100-150 miles per week so my neobladder of 2-3 years hasn't held me back much. You may find some additional factual information at cancer.gov that is bladder cancer specific. Good luck with your project and we hope you will raise the awareness of your classmates.

jj

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9 years 8 months ago #34634 by GKLINE
Peri

Bladder cancer is such a nasty little thing. It creeps up so quietly and packs a big punch, It isn't a "cute" cancer, and it needs to be treated with aggressive tactics.
Many of my family and friends have no idea how invasive the surgery was. They almost think it was cancer "lite" I even had a friend stop to tell me her brother had bladder cancer and was extremely worried about him because the RC Surgery was so invasive. She started by saying how much worse his cancer was than mine. But as she started to break down describing his situation, I laid out the path he would take, and she was familiar with some of the procedures. After describing the path he would take, she said "I bet you are glad you didn't have to go through all of that!" I said, "I am truly glad for that," even though I had first hand knowledge of every step.

I guess it would be hard to have show and tell with Bladder cancer. It is almost impossible to garner any sympathy for such an ugly part of the anatomy. cancer finds itself in the filters of the body. And it is hard to feel sympathy for these things.

I'm thinking that we all need reassurance that we can "get back into Life" so maybe a "get back on the horse" theme would be a positive spin.

Either that, or wear pants wit an eternal "wet spot" as this disease leaves us with new plumbing that, sometimes leaks.
:laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh: :laugh:

I don't think that last bit is going to fly.


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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9 years 8 months ago #34631 by mmc
Well, with stage 2, you hopefully would not need the bald wig. :)

Maybe someone else can come up with a creative thing to show you understand... I can't think of anything right now.

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...

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9 years 8 months ago #34630 by student11
Thank you guys all so much for the help you've given me so far! There is a lot to learn about bladder cancer! With your guy's help and the help of the internet I think I'll easily be able to do the writing section of my project, but there is another section too. We are supposed to do something creative and personalized so show that we understand at least a little bit what it would be like to be in your situation. For example, in the past people doing a cancer project would wear a bald cap to school one day, or someone doing a different project made a cane for themselves and personalized it. Other people have even written short stories and then gone to hospitals and read it to people suffering for their disease. Let me know if you can think of anything that would be creative and fun. Really anyway that bladder cancer has changed your life that I could attempt to emulate for my project. Let me know! Thanks again for all of your help so far!
Peri

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9 years 8 months ago #34619 by mmc
Peri,

This link is a good resource for understanding the basics about bladder cancer and the symptoms. http://www.emedicinehealth.com/bladder_cancer/article_em.htm

The primary symptoms are: Blood in the urine (sometimes so little that it can't be seen but is discovered in a urine test), burning or pain during urination, changes in bladder habits (frequency, urgency), multiple UTIs (Urinary Tract Infections) in a year.

Since women can have other reasons for blood to be present, they must be especially diligent. If they think blood is not related to periods, they must INSIST on a referall to a urologist from their general doctor. Women are often diagnosed in later stages than men because blood in urine gets written off as being related to menstruation when it is not.

Now, to the situation of diagnosis. Typically, when told one has bladder cancer (as with many cancers) the initial reaction is shock. Once the doctor says the words, you only hear about every fifth word of what he or she says after that. Your head is spinning and your thinking "Oh crap! I'm gonna die!". Being diagnosed with stage 2, typically means the surgery so the urologist is probably babbling on about the surgery and what that means. Of course, you are not hearing much of this because you're still thinking "What am I going to do, why me, how did this happen, I'm gonna die, what about my family". Then the urologist might even start explaining the surgery and that for men they remove the prostate at the same time as the bladder and for women they remove part of the vagina and also remove the uterus. So, for a younger person, male or female, you're thinking "But, I wanted kids. How the heck am I going to have kids? What about sex?"

Once you recover from the initial shock of the diagnosis, one typically starts searching for information. Common searches people first do are on prognosis. You want to know if it is even worth doing anything about if you're going to die in a couple years anyway. Luckily, when caught early, bladder cancer is very treatable. It takes a while to find this out though so it is a nerve racking time. Telling family and friends is hard and you want to have information as soon as possible so you can explain things to them. I'm not sure if you've already learned about the stages of grief, but this is something many people go through when first diagnosed. That's denial, anger, acceptance, etc. You can google "stages of grief" for more on that.

Just a note. While not all people who get bladder cancer smoked, it does greatly increase the chances. The reason is that the body filters carcinogens just like it filters other things. Those carcinogens sit in the bladder in the urine exposing the bladder wall to prolonged contact. This might also be helpful information to share with your class. There are other risk factors that you will read about if you look at the links I gave you, but smoking is the biggest one. Men get it more than women but a higher percentage of women die from it because of later diagnosis, a thinner bladder wall (which means it can penetrate the bladder layers faster in women even if the cancer is spreading at the same rate), and potentially other reasons they haven't figured out yet.

I think this may be enough to get you started on your project. Let us know any other questions that you have as you go along.

Read through some of the forum threads on this site, especially the newly diagnosed. That is where real live people who truly facing the situation described post questions and fears and concerns. Try to get into the head of the person you are reading about, feel the feelings if you can. Convince yourself, for only a moment that you truly were diagnosed with stage 2 cancer. Let a tear well up in your eyes. Feel the shock and disbelief. Then...tell the story.

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...

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