Saturday, March 8, 2014

be proactive ... to stay active ...

[Disclaimer: This is a re-tweak of previous posts just so that it stays in the front of every woman's mind]

On 30 May 2012, I had laser surgery to remove some cancerous cells that have invaded my body. It isn't past tense on purpose. The cells are still there ... just waiting. The rare vaginal cancer that I have ~ Vaginal Intraepithelial Neoplast ~ has an 80% chance of returning ... and spreading. So I'm really kind of in limbo.

It still amazes me that so few women that I've spoken to about my cancer have ever heard of it, or knew that it was possible.

The National Cancer Institute believes that vaginal cancer is a rare cancer that affects less than 2% of all gynecological cancers in women. I believe that percentage is wrong. I believe that more women get it, but because they don't get annual pelvic exams, it isn't detected until it gets to Stage IV when it has spread to the lymph nodes or other organs.

This is a cancer that is caused by HPV. The delayed and unexpected gift from an unfaithful fiancĂ©e over thirty years ago. That said ... mothers, protect your daughters [and now sons] by getting them the vaccine. It will protect girls from approximately 19,000 cancers, and boys from 8, 000 cancers as they grow up. [stats from here]

The information below is paraphrased from the Cancer Treatment Centers of America's website. I'm sharing it not to cause panic, but to show how important it is for women to continue to have annual pelvic exams even if they have had a hysterectomy (partial or full) or have ever been told it wasn't necessary to continue the exams.

The point that I really want to stress is that this IS a cancer that can spread if it goes undetected. You must be an advocate for your own health. Get annual exams especially if you have had to have a hysterectomy due to any kind of dysplasia. Get annual exams even if you haven't.

I had my hysterectomy in March of 2006 and continued to get annual pelvic exams every six months for two years after. Then I was able to go back to just once a year for the next three years. I didn't have any abnormal test results (again) until December 2011 when my test came back showing dysplasia in some cells. The vinegar colposcopy biopsy done in January came back VIN 1. Another one in February came back VIN 2, and by the time of my surgery in May ... it was VIN 3 ~ Cancer. That is how quickly it advanced. The surgeon felt that he had removed 95-98% of it ... which sounds good, but still leaves "something" to begin again.

This is the shadow I live under. Not the "if" it comes back, but the "when" and the "where."

I'm supposed to go back for a pelvic exam every six months now, but I had to go to the county health clinic for the one in December 2012. They'd never heard of my cancer before, so did a simple exam, without vinegar which is now being used to see cancerous cells. [read this article]

I was due for another one last June, but didn't go because I wanted to go back to the doctor who did my surgery a year ago, I just couldn't afford it.

Even after I got a full time job in September last year that offered insurance, I couldn't go for another exam in December because none of the doctors I needed to see accepted my insurance.  I would have had to pay for the office visit in full and just don't have the money ... or the desire to add to my stack of bills that give me nightmares.  When I changed my insurance to the next level up at open enrollment ... the money they started taking out of my paycheck to cover it put me back on that paycheck-to-paycheck roller coaster.  Paydays I have to decide what is more important ... lights?  water?  food?  gas in the car to go to work?  Not to mention that I would miss work to see a doctor and then have a smaller paycheck as a result.  It is a vicious cycle.

Vaginal Cancer:

There are a combination of guidelines set by the International Federation of Gynecology and Obstetrics (FIGO) and the American Joint Committee on Cancer (AJCC) to stage vaginal cancers. These guidelines help doctors get an overall picture of the extent to which the cancer is affecting the body by taking into account size, shape and spread.

"The TNM system evaluates the size and extent of the tumor (T), the spread of the cancer to the lymph nodes (N), and whether or not the cancer has spread (M) to other sites, using the letter M to indicate metastasis. The combined summary of the categories TNM are reported as Stages 0-IV. The FIGO system, on the other hand, stages vaginal cancer based on the size and the extent of the tumor (T)."

"TNM Stage Grouping for Vaginal Cancer

The following are the TNM stage groupings for vaginal cancer:
  • Stage 0 Vaginal Cancer - Called carcinoma in situ (CIS), this cancer appears in the epithelium, the top cells lining the vagina. Women may also hear their doctors call this Stage 3 vaginal intraepithelial neoplasia (VAIN)
  • Stage I Vaginal Cancer - The cancer may have grown throughout the vagina, but it has not spread beyond the vagina. It has also not spread to the lymph nodes or other distant sites. 
  • Stage II Vaginal Cancer - Doctors have discovered cancer in the connective tissue near the vagina. The disease has not spread to the wall of the pelvis or other areas of the body. 
  • Stage III Vaginal Cancer - The vaginal cancer has spread to the walls of the pelvis and/or the nearby lymph nodes. No distant sites are affected by the cancer. 
  • Stage IV Vaginal Cancer - In Stage IV, the cancer may or may not have spread to the lymph nodes. There are two ways to classify stage IV depending on where else in the body the cancer has spread to: 
  • Stage IVA - The cancer may be found in the bladder, rectum or other organs located next to the vagina, and possibly the lymph nodes. Distant organs or sites are not affected. 
  • Stage IVB - This is the most advanced stage, indicating the vaginal cancer has spread to distant sites elsewhere in the body, such as the lungs."

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