For Christmas, I got my doctor a laminated diagram of the female urological system

For Christmas, I got my doctor a laminated diagram of the female urological system
These are some of the faces of bladder cancer. Go to the BCAN website for more information

When I sit in the waiting room at the urologist I am usually the youngest and prettiest person in the room. This is proof that all things are relative and visible support for the national statistics about bladder cancer. The median age at diagnosis in the U.S. is 73 and 75% are men. Of course not all of my waiting room peers have cancer, but they fit this demographic. Many times I’ve been the only female patient in the office.

I shouldn’t admit this in public, but I take a tiny amount of satisfaction in the nervousness and dread I see in the faces surrounding me. Most things that happen at a urologist’s office are invasive and involve being naked from the waist down. Most of these men have infrequently been exposed to such experiences while most women have had yearly invasive-naked-from-the-waist-down medical exams for the majority of their adult lives. Cold comfort.

In this male dominated world of the urologist office I am struck by how gynecologists and the women they treat have shaped my expectations of a doctor’s visit. I expect the following: the office will be clean and tastefully decorated (or faux tastefully), soft music and/or trickling water will play in the background, the magazines will be a guilty pleasure that occupy me while I wait, I will be weighed, I will be given a soft, cloth gown to wear, and I will see dozens of diagrams of a woman’s body.

None of these are true of my urologist’s office. The television blares in a room that feels more like a bus station than a waiting room. Three-year old hunting and golf magazines entice absolutely no one. I’ve never even seen a scale much less been weighed, and my blood pressure is taken in a room that feels suspiciously like a storage closet. I am given a crackly piece of blue paper to cover my body, and as I wait in my vulnerable state for the doctor, I look at walls covered with diagrams of…penises, not a uterus in sight.

I know I shouldn’t be surprised or alienated by the many, many penises that surround me at the urologist’s office, but still, I am.  Truthfully it’s not just the presence of the penises that troubles me, but rather the absence of the uterus, ovaries, fallopian tubes, cervix, and the vagina, all of which are removed along with the bladder and the urethra during a radical cystectomy. The RC is the gold standard of treatment for bladder cancer at Stage One, High Grade and above. The only as scary for me as being diagnosed with cancer has been reading about RC and its impact. If I have to have cancer and the threat of radical cystectomy hangs over me, then I damned well want the walls of my doctor’s office to show clearly all of the parts that would be sacrificed in order to survive.

I got my doctor a laminated diagram of the female urological system because I want to be able to see my body when I go to the doctor. But I also want to make a mark on his practice and to shape the public perception of bladder cancer. I want people to know the following:

  • I am one of about 18,000 women diagnosed with bladder cancer in 2012
  • About 4,000 women died from bladder cancer last year
  • When women are diagnosed with bladder cancer, it is usually at a higher stage and grade than when men are diagnosed
  • Women’s 5-year survival rate is equal to men’s 10-year-survival rate.

Why is a woman’s prognosis so much worse than a man’s? Consider this. I have had dozens of urinary tract infections in my life. Over the winter of 2011-12 I had repeated and persistent UTIs. I have always been treated with antibiotics and have often been diagnosed over the phone. It took the presence of massive amounts of blood in my urine to ring any bells and get the attention of a specialist. However, when my husband had a UTI several years ago he was sent to a urologist and given a battery of tests, including a cystoscopy, within a week.

When I go to the doctor next time, I expect to see a laminated diagram of the female urological system hanging on the wall. My next goal is to get my doc to buy some couches, paint the walls, and stock some cover-ups made of soft cotton.

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