I Would Like To Talk With People Who Have Bladder Cancer

I am looking to speak to anyone who has bladder cancer. I was diagnosed in May 2001. I am going thru BCG Chemo. I am one year into chemo and 2 more to go. Just would like to meet other people with this disease. I have so many things going on and need to know if a lot of it is normal for this type of cancer. Thank You

My name is Patty Lariviere, I am 53 yrs. old. I was diagnosed with bladder cancer in May 2002. My cancer was a stage 4 tumor,very aggressive and invasive. I went through surgery June 11th where the bladder was removed a portion of intestine was taken and a new bladder constructed. I was lucky in that it had not broke thru the outer bladder wall nor did it effect the urethra. This was an eight hour surgery also a difficult surgery in the recovery department.
Chemotherapy was suggested for 18 weeks using cis-platin which is a very strong chemo to undergo. I have elected to not take the chemo due to much research on cis-platin, side effects, etc. The percentage rate for the cancer returning or not is a 50% chance either way with or without the chemo so I couldn't see putting my body thru any more illness or trauma. Through my illness I had lost 22 pounds in a matter of two months. I was 118 pounds,I have gained back 5 or 6 pounds still only putting me at 104 pounds. My red blood cell count is still very low, it hasn't dropped any lower since the surgery but hasn't come back up therefore chemo for me at this time I feel would do me more harm than good. Hope this helps you some, if you have any other questions please let me know. Good luck to you and take care.
Patty L.

Hi Kathy. Sorry to hear you have been going through the treatments for bladder cancer. You mention BCG treatment, so I'm guessing you had a superficial (To or T1) tumor. Well, that's what I had anyway. Diagnosed March of 2000. Had symtpoms (blood in my urine) few years before but my family doctor chalked it up to an infection. Blood returned much worse in 2000. I did a full round of BCG, then 3 more doses before enrolling in a Celecoxib (cox 2 inhibitor) study with Baylor College of Medicine here in Houston. Didn't stay with it long since I had a small recurrence found in December of same year, so I was taken off the study. Middle of 2001, I had another very tiny recurrence that my uro was able to remove in his office. Last week, my uro found a similar recurrence. But instead of taking it out in the cysto room, he suggested he do it while I'm under general anesthesia, since it's in an odd location. He also ordered another IVP xray (xray of kidneys, and ureters) since I had a high grade bladder tumors. I get the xrays done tomorrow morning.

Oh, a little about myself. I'm 33, married, an engineer, non-smoker, very little alcohol drinker, and an expectant Dad. I live in Houston, grew up in southern Texas (McAllen, near Mexico) and have no family history of cancer that I know of. I don't exactly fit the profile for a bladder cancer patient.

Hope my history helps you understand. Hang in there.

Chuck

My husband was diagnosed with bladder cancer in March of this year. He had two tumors removed (non-invasive Grade 1), spent one night in the hospital and went through what they called "flushing." No other treatment was given. Last Friday he had five more removed (non-invasive Grade 2). He was given a spinal block rather than put to sleep this time. No method of follow-up treatment was mentioned. He was given a catheter and we went home without spending the night.

I would like to take him to a cancer center but his doctor tells me the cancer is not "bad enough" for them to want to treat him. I say any cancer is bad enough...

He is 69, once smoked a pipe, but never cigarettes. He had four by-passes three years ago but otherwise is in good health. There is no history of cancer in his family so we were very surprised at his diagnosis.

I would be interested in knowing the grade of your tumors and why you were given the chemo.

Hello...I was diagnosed in May 2001, with bladder cancer. I am a 42 yr. old woman. I was 41 at the time of the diagnosis. Cancer does not run in my family. I was told I had superficial bladder cancer - non invasive. I had a tumor removed in May 2001. The tumor was there for almost 2 yrs. before being diagnosed. I was told that having BCG chemotherapy for 3 years was part of the treatment. I am now on my 3rd round of chemo. It goes every 6 months for 6 weeks. I also have to do cystos every 3 months and biopsies every 6 months before chemo. I have to do this for life I was told. I was given the clear sign a month ago but I was told after the biopsy that i have abnormal cells growing again. I do not go to an oncologist but i have made an appt. with one. I value my life and any cancer needs to be treated and not ignored. I smoked cigs for 28 years. I quit one year ago this month...and you are right...any cancer needs to be checked and not told that it is not bad enough. You take your husband to an oncologist. If his doctor says he does not need it you take him anyway. It is better to be safe than sorry. Best of luck to you and your husband. Keep in touch with me and let me know how things are going. Good Luck to you...

Thank you for taking the time to reply to me. I am going through bcg for 3 years. This is year one...I am on the third round. There is no cancer in my family at all. I was 41 when I was diagnosed. I was told I was clear but now now I am told I have blood again and abnormal cells in the bladder. I am going to see an oncologist in a week. I was seeing a urologist, but now I need to know what is going on. I also have been diagnosed with vasculitis in my legs which is caused by cancer but I hope one day to back to normal. Good luck to you. Congrats on the new baby. All we can do is take one day at a time. I know i have a 2 yr old grandaughter I hope to see married. My youngest is 17. Best of luck to you and your family. I will keep you in my prayers...Kathy

I've had bladder cancer since April 1998. T1 grade3. Superficial but very agressive. It was also a large tumor. Over 3 inches in diameter. I had BCG treatments for more than a year. I had to stop them though because of serious side effects which were becoming life threatening. Unfortunately the cancer came back in June 2001. Not being able to use BCG anymore my urologist & I decided to try something fairly new called Intron-A (interferon). I had 6 treatments. One a week for 6 weeks. I don't know the results yet. I'm still waiting for my bladder to heal before my urologist takes a look. I was able to tolerate the intron much better than the BCG. Since this is my second cancer diagnosis & having suffered through BCG, Intron, numerous biopsies, cystoscopies, IVP's, ureter tube washings, a needle punch biopsy of the prostate & anesthesia and with the prospect of losing my bladder & having to wear a bag for the rest of my life I decided to search the internet for info about bladder cancer or any cancer. I came across a book on nutrition & cancer by Patrick Quillin titled "Beating Cancer With Nutrition". It's definitley a book worth reading. I don't know if I'll beat cancer but I feel there have to be more weapons I can use in addition to BCG & Intron & I think what I eat or don't eat can have a very positive or negative impact on cancer & my health. Hope we can all beat the cancers we have.
Rich

Thank you for the info Rich. I am starting my third round of bcg. I get many side effects. I am going to see an oncologist in a week. I need to get a second opinion. But I thank you for the info. Best of luck to you...I wish you the best...Kathy

Hi, I'm a 49 yr. old female. I am a heavy smoker. I've been having some problems w/my bladder. Treated for infection. Next visit was clear, but bloods in my urine. I could not see it, but test found it. Had a abdominal barium test. It looked good, but my Dr. said that wouldn't show cancer in the bladder walls. My mom & sister both had breast cancer. So my chances go up. They are doing a urine culture now. I should know something on this by next week. I'm having burning pain 24/7. My bladder fills up-hurts whether empty or not. Can I ask you what your symstoms were? Thank you, pam

Hi Pam. I will try to explain...I was sick off and on for about a year. I was bleeding all the time...thought it was a period but it wasn't. I was bleeding from my bladder. I spent a month in bed with the flu and pneumonia - fevers of 104, back pain, always having to go to the bathroom but not coming out. The doc saw that I kept having blood in my urine, so he sent me for an IVP dye test. That showed that I had a mass in my bladder. He sent me to see a urologist. She confirmed that it was cancer. Within 3 weeks she removed the tumor and started me on chemo. It has been a year and a half. I just finished my 3rd round of chemo...i get it every 6 months for 6 weeks. It is called BCG Chemotherapy. The only way to see cancer in the bladder lining or walls is to have a bladder biopsy done. It is relatively painless and it is the quickest way to check for cancer cells. Also a cystoscopy will help find tumors. I also smoked for 28 yrs...i quit last September. Bladder cancer is caused by nicotine. I have not had any new tumors but I have cancer still. As long as it does not spread anywhere else I am ecstatic. Please ask your urologist to do a cysto or a bladder biopsy. This will show cancer. I have done a lot of research on this and I also know that quitting smoking increases your chances of surviving this cancer. I know it is hard to do but it is your only choice if you wish to stay alive. I used the patch and it was very hard. I also gained 30 lbs when I quit but the disease did not spread. I will give you my email address...please let me know how all turns out. I will keep you in my thoughts. I was 41 when I was told I had cancer. I thought I was going to die...I am now 43 and I know I am going to live so I try to help someone else get through it. I hope I was of help to you. Good luck to you Pam. I wish you the best. I just came from the docs today. Hoped for good news but not to be. Ok, you take care...Kathy