Greetings all,
Finally got my self ready to go out and look for others who have gone through this. But I kind of feel like a complete fraud, because my cancer was Ta/low grade. And it happened so quickly. I'm 29, non-smoker, female.
I'd been having occasional hematuria (gross) that occurred every other month or so. But being a "girl" two doctors told me that blood comes from other places down there. Yeah, no ****. It wasn't until February 17 when I had a very bad episode. When I would have that infrequent hematuria, I thought I was passing a bit of tissue too, but I wasn't sure. But on the 17th, it felt like I needed to go more, so pushed, and a quarter sized amount of tissue came out. And then we were off and running. Two hours later I woke up having to urinate right now. And the urine was blood. There was tissue and clots coming out too. Well, I figured it was time to put in a tampon and make 100% sure it was coming from my bladder. It was. Every two hours I had to urinate, and it continued to be bloody.
The story gets better. I work at a gold mine in a remote area of Alaska. It's a 3 hour drive to the nearest place with any sort of medical facilities. The very bloody urine continued. The next evening I went to the medic on site and told him what was going on. He took a sample, and tested the blood content. It was off the testing strip. Not surprising since you couldn't see through the cup because the urine was so bloody. We called a "Nurse hotline". The nurse on the other line said that because I was stable, there wasn't a hurry to get in, but I should probably see someone. So the next day, still experiencing blood, tissue and clots every 2 hours, I drove myself to the doctor.
He had me urinate in a cup, then did a pelvic exam. His words "Well, it's not coming from your uterus". Forehead slap! Duh! I knew that. I've been in tears on and off for the last 24 hours, I'm pretty much a wreck, and this is what the genius comes up with. But I must give him some credit, as he got the ball rolling. He discussed with me what the hematuria could portent: kidney stones, kidney failure, cancer, etc. I had no pain, which made him suspect cancer. He made an appointment for a CT scan, and to see a urologist. Of course, there aren't any urologists in Fairbanks, so I had to wait til a visiting clinic came up from Anchorage. So I went back to work.
I work week on/week off, as in you go to the mine and are there for a week, then in town for a week. So my CT scan was scheduled to happen the week I was in town. We did that, and I learned that my kidneys looked good. But there was something in my bladder, that I needed an ultrasound to investigate. So made that appointment for the next Thursday when I was in town, and to see the urologist the following Wednesday.
Had the ultrasound. Didn't drink enough water, so they made me drink more. I think that was almost worse than the CT scan. There was a clearly visible mass in my bladder. I called the dr. in Fairbanks who had gotten this all started to hear the results. This was after I had called the Anchorage urologist and checked on my appointment, which because of misspelling my name, it looked like I had to go to Anchorage for the cystoscopy. And the receptionist told me that because I was a new patient I probably wouldn't have a cystoscopy. I told the dr. in Fairbanks this, and he threw a fit. He called the urologist and got him lined out on what the results had been.
So the urologist squeezed me into his lunch break on Tuesday. The nurse had called me Monday to tell me they were moving the appointment up because of the results and that way they could schedule surgery on Wednesday if it was needed, which in the opinion of the urologist, it probably was. Here is where the roller coaster ride got faster. They're telling me I'll probably need surgery before they've even looked inside? Basically, they were trying to prepare me that I probably wasn't going back to work on Wednesday.
My parents live in Alaska too. My mom flew up Tuesday and went to the initial cystoscopy appointment with me. The cystoscopy was not nearly as bad as I thought it was going to be (the silver lining?). I would rather have one of those than have the guy with the speculum crank it open. Off topic. So the urologist, who I really really really like took a look inside, and said yup, you need surgery. He was very positive, that it appeared to be superficial, and with my age and relative health (just need to lose a bit of weight) that he wasn't worried.
So the next day *bam* I'm at the hospital for TURB. Thank goodness my mom was there with me, both through the blackness and tears of the night before, and during the next day. Went in a 2 pm, was home by 9 pm. It did hurt to urinate, that's for sure, and I couldn't get warm for the first couple of hours, but the next day wasn't all that bad. I went back to work that following Monday. Not sure that I should have done that, as I was still tired, but it was something I felt I needed to do.
I got the biopsy results the next Thursday. Classified Ta, low grade, but about 3.5 cm in size. So 3-month cystoscopies for the first year. And reading the surgery report this weekend, I discovered there was another much smaller lesion present too. So guess that's a doble strike, size and two of 'em.
That's the story. But my question is now what? I don't necessarily see myself as a cancer survivor, as I didn't go through chemo/hair loss/miserable life, as the popular image of cancer is. But I do think this is life changing. I'm also frustrated because I can't put my finger on why I have bladder cancer at 29 years of age. I don't smoke. I don't interact with chemicals at the mine (and have only worked there for 1 year). I don't drink soft drinks. Why me?? My mom's side of the family has had every type of cancer but this one. My dad is adopted, so we don't know anything about that side. Besides, he's 60+ and has smoked every day since he was 16. And he's fine! I'm angry that I can't say why I have this. I want a reason.
I also need to figure out what to do over the next 3 months. I've seen things touting broccoli. So I've started adding that to my salad every night. I can't make radical changes to my diet (working at the mine limits my food choices) but I do want to hear from others what they have added, subtracted or changed. I asked my doctor, and he said to stay well-hydrated, as that keeps toxins from sitting in the bladder. Okay, I can do that. But I suppose I want a magic cure that will make sure it never comes back.
And I guess I wished this never happened, that I continued on with my life blithely thinking that I was young and invincible, and that cancer is something that would happen when I was older. Can't I just bury my head back in the sand? Which I know I can't, but here it is 1 month after my diagnosis/surgery, and I'm finally ready to get out and start talking to others about this.
I appreciate any and alll information you would wish to provide. And thank you for making it through my message (tome). First time I've written it all down, and I admit, I feel better.
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