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Dad Daignosed with BC

11 years 1 week ago #24639 by Jmema
J
In June of 2006 I was diagnosed with bladder cancer. My urologist sat me down and said you have three options...do nothing, have chemo&radiation or have surgery to remove your bladder. Then he said I strongly recommend the surgery but the final decision will be yours. I found an amazing surgeon and Oct.19,2006 I had my surgery.
When you hear the word cancer your world stops for a while so I am glad you are helping your Dad sort things out.
Had I not had the surgery I think by now I would be in a very bad place and my quality of life would not be good, if in fact, I was still alive. Instead I am sitting at my computer, watching my granddaughter color and watch Oswald on Noggin.
If you read many articles you will see that surgery should be done within 3 months of diagnosis.
Your father is very lucky to have such a caring daughter.
Blessings.....Jean

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11 years 1 week ago #24638 by Engigheve
Thank you so much!! I am going to dig and dig until I have enough information to make sure he is aware of how important this is. I am not going to give up, because he is too young and he does have options! Printing this information is an excellent idea, at least he can know that there are people who are/have gone through the same thing he is going through.

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11 years 1 week ago - 11 years 1 week ago #24637 by Cynthia
J.,

If you like I would be more than happy to talk to your father. If the cancer is invasive he cannot afford to put his head in the sand and not treat it the likelihood of the outcome being grim is exceedingly high if he does. You are right in trying to learn all you can of this disease and for being your fathers advocate, sometimes the caregiver has to take on this role if the person diagnosed with cancer will not or cannot. The truth of the matter is that with cancer of any type ignorance of your own personal situation can be deadly. Obtaining his records in a good move and you will also need his pathology reports as well as the slides of the biopsies taken at the time of his TURB (removal of tumor and biopsy) for a second opinion. If Dr. Bell is your only choice one the question to ask him are how many neobladder he does a year some Dr’s do a lot of RC’s (Radical Cystectomy, removal and reconstruction of the bladder) but only specialize in certain types of diversions, with the neobladder or any type of diversion for that matter experience does count. Your father will also wish to find out about the possibility of nerve sparing techniques. I know as his daughter you may not need to hear this I know my kids would not but your father is a young man and may be concerned about how this will affect his sexuality it is one of the most common reasons men delay blc treatment as well as the fear of incontinence. There are many here that have experienced RC and are doing well living full and meaningful lives. It is not a situation that does not present it challenges but it is doable for most of us and if caught early enough and with the right and timely treatment can allow the person to come out the other side with a great life ahead of them. If your father does not wish to talk to me or another survivor or visit the site directly try to talk to him about his worries and post them here and print them out for him. Know that we are here for you and your family and please do not hesitate to post your questions we are a family here and your family are our newest adoptees.

Cynthia Kinsella
President American Bladder Cancer Society
PO Box 263
Dalton MA 01227
413 684 4240

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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11 years 1 week ago #24636 by britt
JK. Im in a similar position regarding the VA and not having supplemental ins. I do have medicare but as we live month to month on a small VA pension. I have have an Aid& Attendance pension. This means I am considered to be 100% disabled as well as requiring a care giver(my wife in out case). It alos means that all my care is provided by VA with no copays on my part.
I have had sveral bad experiences with being inpatient at both the cinci VA and now Dayton. My last heart attack was handled by UC and when I I was recovering I was sent to VA right away. They decided to fool around and almost killed me. I also contracted MRSA at the Cinci VA.
Please make sure that somebody has his power of attorney and also that he has a living will. They shuffled my records and denied my wife her rights as my power of attorney. Im sorry to worry you, but I cant stress enough that you keep up on every step of his treatment. The VA policy is that once you sign the consent for treatment form, every thing they do is onsidered in YOUR best interst. If something goes bad, good luck getting any legal satisfaction.

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11 years 1 week ago #24635 by Engigheve
Two Weeks Ago:

My dad had blood in his urine for a few months and finally went to the ER after not being able to pass some blood clots. Four days irrigation, he had surgery. The surgery removed the 5 cm tumor he had attached to the wall of his bladder. The doctor told us he took a biopsy and would get back to us ASAP w/ the results.

3.11.09-

2 weeks later and found out that he does have cancer on the wall of his bladder and is invasive. The doctor said he would like to do the neobladder, and didn't mention chemo.The doctor gave him up to 3 months to schedule the surgery.

He was supposed to go back 3.18.09 and decided to cancel his surgery and try to radically change his lifestyle and eat better and try to treat the cause of the cancer. Even though his efforts are positive, it is not going to cure the cancer that is already in his bladder. I am trying to educate myself on bladder cancer and the neobladder, so I can show my dad how important it is to have this surgery. (I am working on obtaining his file, to find out exactly what stage etc. the cancer is)

The next thing is he doens't have insurance, but he is a vet, so he could be treated by the VA and head of Urology at UC (University of Cincinnati). I believe Dr. Bell would be his surgen (I have yet to do research on him).

My first problem is informing my dad how important it is to have the surgery and him agreeing to it. The second is, finding a surgeon who we can trust and with the VA I think Dr. Bell is the only option he has.

I am just seeking solid cases of men who have had the neobladder, so my dad can see that the surgery it what he needs. I am so scared that if he doesn't have the surgery, the cancer will spread and then he has no options. I know that he might be in a state of denial about the cancer, but I am running out of options on how to convince him he needs this surgery.

I am only 24 and my dad is only 57, we have a full life ahead of us and I want my dad to fight this awful disease.

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