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WebCafé home arrow Tales from the Trenches
Cynthia Kinsella PDF Print E-mail

To read some of Cynthia's writing, see Cynthia's Corner

female, diagnosed at 47
Invasive Bladder Cancer Stage II/ grade III diagnosed 8/6/04

I will tell my story not because the treatment path I chose is for everyone. What I would hope you take away is that I want you to know that it is ok not to always feel brave, that you will at times feel down and rained on, that you can feel mad because it isn’t fair. That having a good cry is sometimes not a bad thing. God willing the day will come that the terror will fade and you will learn to laugh again. And maybe like myself you will realize that none of us know our hours and we all should live, love and reach for the joy like there is no tomorrow. Know that you are not alone in this journey; that many have gone before and came out the other side.

My story

I was just to the point in life that my sons where independent and my husband and I could chase each other around the house with out tripping over tennis shoes. I had finally lost that weight and started exercising and I was feeling sexy and healthy. My work as a Realtor was going well if at times consuming and stressful. We planned to travel more and do the things to the house we had talked about for years. We had the normal worries of our age group elderly relatives and such, but life for the most part was good.

April fools day 2004 I woke up wondering if I was getting a bladder infection. It was a Saturday and I was very busy with work, I did not feel great but listed the most expensive property of my carrier so was somewhat distracted by that. By Sunday evening, I knew I had a bladder infection so Monday morning off to my doctor I went. Sure enough, they found bacteria and blood in my urine, so I was prescribed my first antibiotic. A piece of advice, never get cancer in the summer time, everyone goes on vacation, and I was passed from doctor to doctor. Finally, after four antibiotics and a urine test that finally showed no infection but blood present I was able to see my family internist she and I agreed it was past time to see an Urologist. It took two weeks to get into one as I live in a rater-isolated area with few choices. My internist sent me for an ultra sound, it was then that I first heard the C word, there was something there. By the time I had my biopsy on Aug.6 2004, I was feeling some pain in my bladder area and in the front of my legs when sitting and was passing small clots. When I woke up in the recovery room the people that had been joking and laughing with me before hand, did not seem to be able to meet my eyes and where very quiet. I knew….

My husband was waiting for me in my room and he told me and held me while I cried. It seems my Urologist had not bothered to walk out and tell him but rather had called him in the surgical waiting room. He told him that it was cancer and it looked invasive to him and that oh yes he had told me but I would not remember so my husband would have to tell me again. Nevertheless, he did not have time because he was off on vacation, click. I went home and had quite a time of it with bleeding. I was able to keep everything moving and pasted the clots by drinking a lot of water. We would later learn that he did not only do a biopsy as he told us but had removed the tumor.

Shock…...I could not take it in, did not know what to do next. I remember waiting until I was alone in the house and going to the Harvard Medical School website and looking up invasive bladder cancer. Then reading for the first time about the surgery recommended for the condition and the prognosis. I think I started to scream, but there was no air, I could not breathe. Terror such as I had never felt consumed me. I some how ended up sitting on the bathroom floor rocking myself back and forth for what seemed hours. I finally took something that made me sleep. I woke up when the house was quiet about two am. I went to my office and just sat and a thought came to me. It could be one of my boys, this I could handle, that I could not. For some reason that thought gave me the strength I needed at that point. It was about that time I realized that if I did not stop crying so much that the likely hood of dying form dehydration was better than the cancer getting me. I made a decision that I hope I have fulfilled, to do this with as much grace and dignity as I could muster.

I did not know if I had options, but that I owed it to myself to find out. Once I had a purpose, it gave my thoughts direction. By morning, I had found that Massachusetts General Hospital had the John and Clair Bertucci Center for Genitourinary Cancers.
http://www.massgeneral.org/cancer/cancer_genitourinary_home.htm In addition, they had Clinical trials offering a bladder sparing protocol for patients that qualified. Unlike some of the others places that looked promising they where only two hours away form home. Monday morning before Erin who became my angel had a chance to put away her purse her phone was ringing. By the time, I got off the phone I not only had an appointment but also had hope. Once again, I was held up by summer vacations I would see the team in two weeks. Them I would wait for because this time I was going to see the best.

When we arrived at the center, we first meant with Dr. W. Scott McDougal chief of urology. He did a physical and asked questions then we went on to the meeting with the “team”. I was somewhat surprised by the number of people present. Dr. Donald Kaufman Oncologist and head of the center, Dr. Shipley head of Genito-Urinary Oncology the oncology radiologist. Also, present where the clinical research nurse, a social worker, a radiology nurse and Dr. Kaufman’s Nurse Practitioner Erika Barrett.

Dr. McDougal then looked at me and said unexpectedly “you do know this might kill you?”, and I answered yes I did but I was not planning on it. I think it was Dr. Shipley that explained the first priority was to save my life not my bladder. That they had been doing the combined modality for over ten years, they where to the point that survival rate was equal to surgical removal, while bladder retention was well over 80%. That if I qualified that I would be continually monitored for any cancer in the bladder and if they found it, it had to come out. The main draw back being that because of the effects of radiation on the internal organs I could not have reconstruction. I would have to have an ileal conduit and external appliance if it failed. When they where finished and had answered all our questions I looked them all in the eye and told them I would like them as my primary doctors not as a second opinion., and we where off. What followed was Ct scans, bone scans, MRI’s, blood work, chest x-rays, kidney function tests and then the meeting to see if I could qualify for the bladder saving clinical protocol.

After a scare about a small birth defect on my liver, we meant. I qualified for the study single tumor not blocking a urethra and not have metastasized being the high points. I was given the paperwork on the research study and it was time to make a choice. My husband and I sat in a hotel room and read but as he said, it was ultimately my choice.

I had done enough research to feel I had a handle on my choices. Cystectomy, removal of the bladder with hysterectomy, trying to save the bladder, or do nothing. Well the last would not work for anyone but my undertaker. I went for a walk up Charles Street and thought. Was it vanity that made me want to get out of surgery, did I worry that it would change who I was as a woman? Alternatively, did I have enough faith in what they had been doing at Ma. General for ten years to chance, that I was as a detracting doctor put it in one article missing the window, allowing spread of the disease? By the time, I returned to the hotel I was at peace with my decision. As I walked in the paper work was on the desk in our room and I signed it with no hesitation.

About two weeks later again a delay for vacation, I went in for the TURBT surgical removal of the tumor. It went much easier than the first because much of the tumor was already removed. They found only a few cancer cells, halleluiah. The next step was radiation mapping. A catheter is inserted a dye administered and e-rays taken. Then it is time to be tattooed. I have to tell you my husband was disappointed they only look like three freckles. I tried to talk them into a four-leaf clover or a heart but no dice.

On
Oct 23 2004, I started on the protocol
For seventeen workdays, three times a week low-level chemo to help the radiation be more effective and twice a day radiation. Chemotherapy drugs used where Cisplatin three times a week and Paclitaxel once a week

Three weeks later another biopsy in addition, new Ct scans and bone scans
(No cancer present)
Time to recover then ten working days of chemo using Cispatin twice a week and Placlitaxel once a week a week and twice a day radiation.
Ten weeks another biopsy in addition, new Ct scans and bone scans
(No Cancer)
Twelve weeks systemic chemo starts adding Gemcitabine, to the Paclitaxel and Cisplatin a twelve-week cycle of two weeks on one week off. The intention of this is to take care of any cancer cells that got lose in the body.
Six weeks off and another biopsy new bone scans and Ct scans
(CIS present)
About eight months from beginning until the end of chemotherapy
What will follow is every three-month biopsy the first year, then every four months for the second, every six months for the third year and annually after. With blood work, Ct scans and bone scans
I hope that some day it will be accepted by all that some well selected invasive cancer patients can save their bladders do to the research being done today at places like MGH. It is now to the place they are being reviewed as being just that. This procedure does not offer better survival rates but it will offer enhanced quality of life. No matter what I face in the future, I am proud I could be a part of that.

And The Story Continues

After the cancer returning again and again and I failed BCG treatment, I finally reached the place in order to survive I underwent Radical Cystectomy on May 4th 2006 at the University of Chicago Hospital. My surgeon is Dr. Gary D. Steinberg who specializes in reconstruction following pelvic radiation. I was able to have an Indiana pouch I use a catheter ever four or so hours, the stoma is located in my naval and can not be seen otherwise.  My life has returned to a new normal l can snorkel, dance and enjoy life to the fullest. I have seen past my fears and have chosen to deal with life as it has unfolded and that is all any of us can do.

I do not regret that I underwent the bladder saving protocol at all it was a sound decision based on what I know then. It is not for everyone it is a long treatment path and patient selection is all important. I have since found research that indicated that  the presence of CIS or a mutated P53 gene are counter indicated in some doctor’s opinion when using the bladder saving protocol. Two things I now know that are true of me that I did not know at the start of the treatment.  I also know that there is research that indicated that surgical complications can be as much as 50% higher for post pelvic radiation patients undergoing RC and can severely limit their type of diversion options. Having said that there are no guarantees in life and certainly not in cancer. There are really no answers as to why one person does will with one treatment and not the next.  I have no way of knowing that if I had gone with RC from the first if I would still be here as the chemo drugs that where part of the protocol I received show great promise and I would have most probably not received them if I had not been part of it.

In conclusion, I want to tell you a few things that I feel are very important. I will assume that if you are reading this you or someone you love has been diagnosed with bladder cancer, if so you are terrified, I know I was. In addition, some of the things I read as I was researching this on the internet gave me heart palpitations. So take a big breath, slow down and know that your job here is to become an informed consumer. First off, you owe it to yourself within your means to find the best doctors in the field, second opinions should not intimidate you present doctor.

Go to newly, diagnosed http://blcwebcafe.org/newlydiagnosed.asp on this website. If you scroll down you will find a list of hospitals. If you do not live near any of them and cannot possibly travel, some of the best and brightest in the country will many times be willing to consult by phone with your health care team to find the best solutions for you. If you face surgery make sure your surgeon and facility specialize in your procedure and do not do only a few a year.

This is not a time to be frugal you cannot take it with you; travel if you at all can if you do not like the answers you get. Many of the bigger hospitals have oncology social workers that can help with lodging and such if money or logistics is a worry. If you do not feel confident in your doctor, find one you do. In addition, reach out for support, friends, online groups such as this and real time local support groups will help many tremendously.

Please feel free to email me if I can at any time be of help. 

Cynthia Kinsella
President and CEO
American Bladder Cancer Society

www.bladdercancersupport.org

413-684-4240

Last Updated ( Thursday, 12 June 2008 )
 
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