I was diagnosed in March 2004 at the age of 36, with T1, G3 papillary tumor (2cm) with CIS.
There is no history of cancer in my family. I have two brothers, who are close in age, and they are both healthy. My parents are still alive and both are very active. Three of my four granFdparents lived happy lives well into their 80’s.
I have always been pretty active and healthy. I have never smoked. I played sports in high school, took up cycling while I was in school pursuing my undergraduate degree. I served 5 yrs active duty in the US Army (1989-1994). I was stationed in Germany and also served during the first Gulf-War (1991) as a Lieutenant in the Field Artillery branch. That is the closest that I think that I may have come to overexposure to carcinogens. I slept many a night under the clouds of the burning oil wells. In 1994, I got left the military at the rank of Captain, had a career change and went back to school. I obtained my MBA in Dec 1996 and have since been working as a consultant in the Health Care Insurance industry. I have remained active and healthy. I became an avid runner. I have run in various 5ks and 10ks. I had the opportunity to run in the Providian relay in November 2003. It was a blast. It is a 199 mile relay race with 12 people to a team. The course winds from Calistoga to Santa Cruz, CA. We finished in 29 hrs. I also ran my first marathon in Dec 2003 at the age of 36. I finished in 4hrs, 2 mins which placed me near the top third of the finishers for that race. I am confident that I will run another marathon.
In March of 2004, while working on a project in Minneapolis, I started to feel under the weather. I thought that maybe I was coming down with the flu. Then I started to notice that I was having the urge to urinate more often and to my surprise I noticed a bit of blood in my urine. I called my doctor in Dallas and we discussed how I was feeling. She thought that it sounded like I had a UTI. We decided that I should come back to Dallas for an office visit just to make sure that everything was as discussed. By the time I landed in Dallas I had a fever of 103. The fever and the blood lead my doctor to believe that I definitely had an infection. I even remember her saying that I shouldn’t worry as I did not fit the profile for someone with cancer. So, she gave me a prescription for 7 days of antibiotics. I took the antibiotics and immediately started feeling better. I flew back to Minneapolis.
However, within a few days, the blood returned in my urine. I flew back to Dallas and this time after my doctor saw me she immediately scheduled a consult with an urologist. She suspected that I may have had a kidney stone that was causing an obstruction. So, on a Friday afternoon, I found myself in the urologist’s office and after a quick consultation with him, he suggested that I have an in-office cycstoscopy to see if we could locate the offending kidney stone.
Up to this point, it never crossed my mind that I could be facing the Big “C”. During the cystoscopy my urologist told me that he did not see any indication of kidney stones. However, after my getting dressed, he wanted to meet me in his office. It was then that he told me that he saw what he thought to be a small tumor and some “velvety patches” in my bladder. I left his office completely caught off guard. I had driven myself to the appointments and found myself just sitting in my car trying to process the information that I was given and feeling very under prepared for what to do next. I got home and I hit the internet and began doing research. I researched the disease, I researched the doctors, and I researched the treatment options.
I have now been living with BC for a year. I feel that I have come a long way in that year. I had my first TURB in Apr, 2004 by my urologist in Dallas. That biopsy/pathology gave me the diagnosis of T1/G3, papillary tumor (2cm) and CIS. I had the initial x6 BCG treatments. I had another TURB in July in Dallas and that revealed that I still had CIS. After that TURB, I switched my direction of treatment to MD Anderson. I switched to MD Anderson, because of the reality of an impending cystectomy. I decided that if I should get to the point where a cycstectomy is my only option then I want to have the procedure done at a major cancer center. I feel very comfortable with my Dr at Anderson and I have since had two TURBs performed there, the latest in January 2005. Both subsequent TURBS have been clear. Additionally, my FISH and cytology in January 2005 were also clear. I have continued to receive my quarterly BCG treatments by my urologist in Dallas. He is comfortable with having my doctor at MD Anderson in charge of the direction of my care. Most of all, I am comfortable with the arrangement, and in the end, that is what counts.
I am now receiving BCG every 6 mos. I have a follow up TURB scheduled at MD Anderson for Apr 2005. I am hoping for another all clear.
My one frustration with having BC is that I have found very little information specifically for folks that are my age. I did come across Roger Barton’s story on the storyboard and was very thankful for that. He seems so positive in his outlook and it was another validation that I am not alone being young and living with BC.
I do have concerns regarding how BC might affect sexual function. I don’t have any children and I am not sure how having children would fit in with my life at the moment, but I am a bit frightened by the prospect that it may no longer be a viable option. And aside from the procreation aspect, the loss of ability to perform sexually seems scary.
Another concern that I have is with the financial aspect of BC. I am fairly young. I have a great career and a comfortable income. I am continuing to progress professionally and recently took a new position that has yielded a promotion. My medical insurance has been great so far. But I am now shy about making big purchases as I feel that I may need to save more money to offset the cost of treatment. I am struggling with such things as; the purchase of a new car or spending money on a trip abroad. Although I can well afford them now, I feel bogged down with the need for frugality because the money may be better spent on future medical needs or saved for spending in the event that I am unable to work. I am not sure if this sounds silly. I am just wondering how other folks with BC or Cancer consider their disease and its possible impact when making financial decisions.
I would be interested to hear how others my age are dealing with aspects of sexuality and finances in light of their disease.
On the whole, I am continuing to do well. I have a great partner, a supportive family and wonderful friends. I try to maintain a healthy diet and I am taking Oncovite as recommended by my Doctor. I am staying positive and I am setting a goal of running another marathon. I plan on beginning a marathon training program at the end of the summer and I hope to run in the Dallas marathon in Dec 2005.
All the best,
37 yo, Dallas TX