BLADDER CANCER SURVIVORS
Vincent Sussman
I am a Bladder cancer survivor. . Several weeks before my 80th birthday, a grade 4 cancer was discovered in the muscle lining of my bladder. My bladder had to be removed and a piece of my intestine would be used to conduct the urine through my abdominal skin into a plastic pouch. This is called an ostomy.
The operation took 6 hours and I was in the hospital for 9 days. The cancer did not spread and I did not need follow up treatment-no chemotherapy. While in the hospital, I decided to document my experiences. I wanted to be a player and not just a patient.
When I came home, my biggest challenge was learning how to care for, clean, and empty the ostomy bag that now was my bladder.
It was a struggle for several weeks. The pouch leaked, and there were many times my wife had to change the bed sheets, and my pajamas in the middle of the night. I had a routine of walking the length of my house and increasing the distance as I became stronger. I was very upbeat during my recovery.
In December 1999 just 2 months after my surgery, I wrote in my diary, “Today is beautiful. The sun is shining. It is 60 degrees. I go for a 2 mile walk and inhale the fresh air, expanding my lungs. I feel great, my life is returning to normal. I have survived cancer and expect to see the arrival of the millennium within a few weeks.
I learned that 55,000 people each year are diagnosed with bladder cancer. It most often occurs in people over 50, men more than women.
I know that when I discovered I had cancer, and would have to live with an ostomy bag, I was scared. But I found that I could live normally and I wanted to help other bladder cancer victims.
I decided to put my story on the Internet. With the help of my grandson, we designed a website. Within a few weeks, I started to receive messages. In less than 6 months, I received over 5000 hits and about 300 Emails, wanting to talk to me. I responded to all, giving support and information. Many were from foreign countries.
Australia, Canada, China, Greece, Iran, Italy, South Africa Trinidad, Scotland, England
My website is https://www.angelfire.com/ct3/survivirorofcancer
Some messages were posted with their Email address
offering to chat. Others were Email
to me, which I keep anonymous.
Excerpts from a number of theses are as follows:
1/14/01 Mr. A USA
Hello and good evening.
“Things are becoming a little more clear for me after reading your diary. Since receiving my biopsy report, I considered doing nothing (and letting nature take its course ) about my newly diagnosed bladder cancer. I couldn’t see myself doing things with the plastic bag, with leaking. I feel differently now that I read how well you coped with it.
Tell me more, if you don’t mind. What was your day like yesterday, the day before, or 5 days ago? Tell me how your life has changed after surgery. Your website has brought me a little closer to making a decision.”
1/14/01 My response and Email to Mr. A answered his questions and told him “Do not let nature take its course”. I am fine. I play golf, swim, drive and am back to normal.
1/28/01 Mr. A USA
Since my last Email to you, I decided to have my entire bladder removed. I would like to tell you I appreciated reading your story. Unless you have corresponded with someone prior to your surgery, and felt the calm reassuring voice, you cannot know what a difference it can make
4/2/01 Mr. A USA
Dear Vincent,
Thank you for your Email. I’m home about 5 weeks now; the first 2 weeks were a little tough. I tried to follow your routine of walking. My strength is returning and I am back behind the wheel of the car. I am slowly getting back to the five or six day routine.
Vincent, I want you to know that you were a major force in my mental outlook with this bladder business. It is not often that one can say that about another person, especially someone who [until a short while ago] was a complete stranger.
1/19/01 A.McEwan Perth Western Australia, Email amcewan@internetty.net.au
I like Vincent am also a Bladder Cancer Survivor. I had my bladder removed in October 1998, and a Neo-bladder constructed from a portion of my stomach. Since then, I have had some Chemo, also some radiation treatment. That is because the Cancer had spread to my lymph system. At the present time, it is dormant. The main downside I have is that I have to rely on the CAT scan results, before I can plan holidays, etc. For the record, I am 73, will be 74 in April. I am very active in community work, and in electronics and building construction.
2/11/01 S.Rodriguez Riverside, California Email sr9414@aol.com
I am a bladder cancer survivor. My bladder was removed on Sept 1997 and a new bladder was formed using part of my small intestine. Everything works real well. My last tests showed NO evidence of cancer. Also my prostate, lymph nodes and my appendix were removed. When my cancer was discovered, it was stage 4. After my surgery, I went through Chemo just to be sure that all the cancer had been removed. Today I almost back to functioning at 100%. I am a male, 63 years of age.
3/6/01 Barry Parker 3/6/01 Ontario, Canada Email barryparker42@hotmail
I had a bladder cancer operation to remove my bladder and prostate but had a replacement bladder constructed from part of my small intestine so I don’t have a bag. All I have is a big scar and everything works really well. That was Jan 1999 and in 2 weeks I am running a 5K race, it took weeks to recover from the surgery but almost a year to recover from 4 months chemotherapy. This whole ordeal has changed my attitude towards life, as anyone who survives cancer will agree. I will talk to anyone who wants to ask. I was 56 when this happened and have always been healthy, eating right and keeping fit and trim so this was a real shock. I now love life and want to enjoy every day so if anybody wants to talk you have my Email address.
4/8/01 Ms B of St Helens, England
Dear Vincent
My mother is currently in the hospital after having her bladder removed because of cancer. When she was first told she had bladder cancer, I looked through the Internet and found your article. I showed it to her, to see what was to happen from an individuals’ perspective in a positive way. She has read your article many times and in particular day two, after her operation when she complained of being cold and feeling depressed. I read the corresponding part of the article to her to remind her that this was what happened to you and what might happen tomorrow. It did help. It is now day five after her operation and the difference is incredible. She also had her operation on a Tuesday so it is easy to give a day by day account of what to expect. She has asked me to thank you for your article as it is amazing how similar the experiences are and she says it helped so far in preparing her for what to expect.
4/11/01 Paolo Raggi Rome. Italy Email p_raggi@tin.it
I too, had a bladder cancer operation during June 2000 to remove bladder and prostate and now I’ve a new one made with the cecum and no extra hole in my body. All is going well and I’m recovering from 4 months of chemotherapy ended in November 2000. I’m 57 years old and I hope to talk to anybody who wants to ask for many, many years.
Greetings to all bladder cancer warriors.
6/16/01 Rosanne California Email gypsyroz3@aol.com
Thank you so very much for taking the time and having the thoughtfulness of presenting your website. My husband was just told yesterday he needs his bladder, prostate and lymph nodes removed in three weeks. My daughter sent us your website and my husband and I found it very encouraging. I have sent several Emails to others that have registered on your site. Their input was also very helpful and encouraging. Your website provided exactly what we were looking for. All the best to you and yours.
7/10/01 Daniel USA
Like you, I am a cancer survivor. I, however, was diagnosed when I was 3 years old. I am now 35. I have had a urostomy for 32 years. I hate waking up with the pouch leaking. I wish I knew how it felt like to urinate. I can never have children because of the operation.
I was recently married. My wife is a wonderful woman. I, too, play golf. Do you still play? Thank you for sharing your experiences with all of us in cyber-space . Write to me if you have the time. I would enjoy a message from you. Good luck.
Daniel
Dear Daniel,
It is unusual for a 3 year old to have bladder cancer. Bladder cancer comes from exposure to many chemicals as well as poor environmental conditions and smoking. I, like you, now, have a pouch. I have solved the leaking problem by using Uni-Solve TM, a solvent wipe, to dissolve the old adhesive on the skin and Skin-Prep TM, a wipe to offer better adhesion. I am now 81 years young and feel great. I golf, swim, drive and carry on normally.
Best of luck to you.
Vincent
8/1/01 Tracy USA
My father, a smoker for many years, had polyps removed from his bladder 2 weeks ago, and was told after an MRI that cancer was found and his best chance of survival is complete removal of his bladder. I have printed out your story and will share it with him at an appropriate time. You share a few things with my dad. Like you, his initial surgery was 2 weeks before his 80th birthday. His career was in engineering, and until recently he enjoyed golfing very much. He is keeping a brave face, but I am sure he is very frightened about the future. Once again, thank you. I was deeply moved by your courage and humor throughout your ordeal. I am grateful to have found a real person (with a picture, no less) after hours of tedious medical information.
Dear Tracy,
Your Email was very interesting especially that your father had much in common with me. It is almost 2 years since my surgery and I still golf, swim, drive and engage in my normal activitie. Bladder cancer is curable and he should take a positive attitude.
A friend,
Vincent
8/14/01 Jeri USA
My father has to have the same operation you did. His cancer is similar to yours. He is 79 years old and we want him around for a whole lot longer. My father’s doctor also said that there would not be any further treatment needed in his case. I am having my brother print your story for my dad. I am sure he will enjoy reading it. Thank you again
Jeri
8/22/01 Email cathy.mumford@ah.novartis.com
Just surfed in Johannesburg
Hi there. Have just read your story. Well done for managing to keep that journal and also
for being so positive. I recently had my bladder removed due to cancer and I was given a reconstructed bladder made up from part of my bowel. Went through some pretty torrid times with chemotherapy both before and after the operation, but feel pretty confident now as subsequent CAT scans show no lesions. Another CAT scan due in November but I’m positive it will be clear.
God bless you.
9/3/01 Pat USA
Hello, my name is Pat. I just finished reading your remarkable story. My dad just had the same surgery done at the VA hospital in south Florida. He had his bladder removed on May 22 of this year. He is doing great. He spent about 2 months in the hospital. The first 6 weeks was really hard. It took a while before he could get his stretch back.. Now there is no stopping him. He is very involved in his church and went back to being an usher. All the things I read in your story, fit my dad to a tee. He will be celebrating his 80th birthday on Sept 16, also being from Brooklyn, N.Y. Your story touches home. Stay well and I will tell my dad your story. He will like that from South Florida.
Dear Pat,
Give my best regards to your dad and wish him many more good and healthy years.
Vincent
7 /16/01 Mr F, Montreal, Canada
I was very moved by your story about your personal experience with bladder cancer. I am 71 years old and a survivor of the holocaust and I have recently been diagnosed with bladder cancer and would like to speak to you concerning my options. I have been given the alternatives of surgical removal of my bladder or Chemotherapy and radiotherapy. I am extremely confused and would greatly appreciate your counseling.
Dear Mr. F,
Thank you for your Email. My bladder cancer was a grade 4, the most severe type and removal of my bladder was necessary. Less severe forms may be treated with Chemo or Radiation. Your urologist should recommend the best procedure for you.
9/19/01 Mr F Montreal
It has now been several weeks since I had my bladder and prostate removed surgically and am just now beginning to "see light at the end of the tunnel". I can't thank you enough for giving me the right advice and confidence to go ahead with the operation. I was being pulled in all directions and didn't really know whom to believe. Your story and advice helped calm me down and make one of the most important decisions of my life. You inspired me. You encouraged me to have confidence in my surgeons, who have done an excellent job. Please continue to help others as you have helped me and both they and I will be eternally grateful to you.
10/9/01 Ed USA
Dear Vincent,
Your Emails to me helped a great deal to relieve the mental tension I was going through prior to my operation I have had six operations through the penis for removal of bladder cancers. I started having problems urinating in March of this year and was operated on April 9th to ream out the prostate On August 16, another operation was performed to remove still another bladder tumor. This tumor penetrated the wall of the bladder and the doctor indicated that the bladder would have to be removed. That was probably one of the worst weeks of my life. The final operation took place on September 17 and lasted for six hours. They removed the entire bladder, the prostate and all the lymph nodes in the area. I stayed in the hospital for ten days and then went home. I have been walking a lot and am working in my home office as an engineering consultant. We have a home nurse twice a week but I think that will stop at the end of the week as my wife is the best nurse I could possibly have. Vincent, you were right. I came through without any significant problems. The pouch doesn't bother me in the least and I will never again miss part of a movie because I had to go pee. By the way, I went the same route as you and had a 10 inch section of intestine removed to become the reservoir to the pouch.
Dear Ed, 10/12/01
I was happy to hear that you are doing well. It will take you a little longer to get your full strength. Like me, you are lucky your cancer did not spread beyond your bladder. You will be O.K. and with your wife's support you will be back to normal.
11/13/01 Mr. J USA
I am 68 years old and just had my bladder removed on September 27. I am progressing well, still weak and tired, but do some small jobs around the house. Now the oncologist has suggested 3 or 4 months of chemotherapy with possible side effects that sound ominous. This despite the fact that the pathology report after surgery indicated they got all the cancer. They also removed the prostate and 2 lymph nodes where no cancer was found. Was chemotherapy recommended to you after surgery? The oncologist says without chemo there is a 50% chance the cancer will come back in the lungs, liver, or somewhere else. Yet if I have chemo, there is no assurance it will have a significant effect. He says there are very few studies of bladder cancer and the beneficial effects.
The decision as to whether to have chemo is mine to make. I was wondering what you decided. Any thoughts or advice will be welcome and helpful.
11/3/01 Dear Mr. J
I am glad I could offer you support. My urologist and oncologist did not recommend chemo or any other treatment. I did undergo a CA T scan and no cancer spread.
Several other bladder cancer survivors who have contacted me did not require further treatment-no chemo. I suggest you get another opinion from a specialist. My urologist has me taking CAT scans on a regular basis and after 2 years, everything is OK. I believe vitamins have helped me. I take a senior multivitamin, vitamin E 400IU, and Vitamin C 1000mg daily. These contain antioxidants and offer protection. I am doing very well.
Vincent
11/2/01Diana USA
Hi there Vincent.
I wrote to you about a month ago regarding my father's operation (the same operation you had-bladder removal for bladder cancer). Coincidentally, he went into the hospital and had the same operation on the same day as you, only this year. He'll be 80 this month. This of course was a major operation and he was still working part time, but I think he's getting discouraged and a little depressed. My mother is being supportive. He was operated on October 5th. He's been home and seen the doctor and the doctor said he could do anything he wants (and he's going for walks}, but he has some concerns. I would like to know how long it took you to feel normal. His appetite is still coming and going. How long did it take to get your appetite back? He says he feels cold and is still not 100% and is still tired. Can you tell me anything that I can tell him that would help him right now? (It has not even been a month since he was operated on} .He's always used to be working and doing what he wants and feeling pretty good. I think this is now hard on him, mentally and emotionally, too. Did you go through this? I did read your story that you went to support groups. Please answer me soon.
11/2/01 Dear Diana,
Just received your Emai1. It took me about 2 months to get back to normal. Your dad’s case seems to be similar to mine. I hope, as with me, the cancer did not spread beyond the bladder. If you had not done it, please print out my story for him so he could follow my progress since the time line was so similar. The hospital ostomy department should be able to give info on support groups m your area.
1/1/02 Bernice USA
I,too, am a survivor of bladder cancer. My symptom was also blood in the urine. I was diagnosed on 12/20/01 and had surgery on 12/21/01. It was to have been an overnight stay. However, my bladder ruptured during surgery. I had a reconstructured bladder. I got out on 12/24/01 and had 30 people to dinner on Christmas day 12/25/01 at home. The bag I had to during the next 10 days was the worst part. The good part was that it had not spread.
The Internet has enabled me to disseminate my message that bladder cancer is curable. I want to salute the many bladder cancer survivors who offered support and comfort to bladder cancer victims as well as the urologists, oncologists and other professional warriors who are fighting this cancer and winning the battle.
For a copy of this story please click below.
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