Tuesday, September 4, 2012

Feel the Teal: Ovarian Cancer Awareness Month

Guest post today, thanks to R. Jean Rotem's blog FULL DISCLOTHESURE:

Feel the Teal: Ovarian Cancer Awareness Month

Teal Awareness Ribbon Round Sticker Did you know that today is Feel Teal Friday and that President Obama declared September Ovarian Cancer Awareness Month? I bet you didn’t, and to be honest, until yesterday, I didn’t either. Ovarian cancer, unlike its pink cousin, breast cancer, is way down on most of our radars as familiar diseases to look out for. While is affects less women, the two are often linked and yet a screening process for ovarian cancer has yet to be discovered, and without over symptoms in its earlier stages, it is called the “silent killer” for good reason. This is an intensely personal issue for me so I hope you’ll stick with me here and read on. One of my favorite people in the whole world has been battling this monster of a disease for SEVEN years. She’s my cousin, Susan R. Frank, and it’s best if I let her share her story in her own powerful words. FEEL FREE TO RE-BLOG AND SHARE: Twitter, Facebook, etc. It’s an important message.


How would you feel if your gynecologist, just prior to surgery, actually promised you that you did not have cancer, only to awake hours later to find out that not only were his promises empty but that you in fact had advanced ovarian carcinoma. For me it was my worst nightmare coming true – diagnosis with Stage 3C metastatic ovarian cancer at the age of 46. Since losing my mother to breast cancer as a young girl, I have both expected and dreaded a cancer diagnosis for much of my adult life. I had measured my successful health status by reaching certain birthdays of my own children that my mother never attained with my older sister or me. After much calculating, I thought I was in the clear.

Even though I am a scientist, I denied an obvious familial propensity for breast cancer and only discovered my BRCA-1 genetic mutation status after I became ill. Big mistake, as this mutation placed me in a high risk category for developing breast and ovarian cancer. As for the initial gynecologist? He was quickly replaced with a highly reputable and qualified gynecological oncologist who performed expert debulking surgery on me a week later. The first doctor did come visit me once in the hospital, which I thought showed courage. Fortunately our meetings ceased after that time.

In the almost seven years that have passed, I have had three surgeries, more than four years of chemotherapy, one bowel obstruction and have lost my hair three times. I have traveled, been divorced, began a fulfilling career in science, have enjoyed two high school graduations, two college graduations and one son’s wedding. I never expected to live long enough to attend half of those wonderful events. I have had access to and have received excellent medical care throughout this process and emotional support from professionals, friends, and family. I have been fortunate to have had health insurance that has covered my surgeries, hospital stays and treatment.

I am one of the lucky ones. As you may have heard, ovarian cancer is now a “chronic disease.” Following the initial surgery and my first regimen of chemo, the cancer successfully went into remission. I have enjoyed periods when I was dancing with NED (no evidence of disease) and received a breather from chemotherapy. Ironically, the BRCA-1 mutation may provide an advantage during therapy. The mutation affects how cells repair genetic damage and many of the chemodrugs are designed to further damage the genes in order to kill the cancer cells.

I am now into the sixth month of my fourth recurrence, which began with a bowel obstruction due to cancer invading my colon. This resulted in abdominal surgery which left me with a colostomy. I look forward to that being reversed, however my oncologist insists there is no rush. I have learned that with chronic ovarian patients the motto is “leave well enough alone.” Quality of life issues loom large, as well they should.

As I said, I am one of the lucky ones. I have minimal side effects from all the drugs I have been given and my blood cells are holding up. I am able to work full-time and would rate my quality of life as a 7 or 8 on a scale of 1 to 10, with 10 being the best. This is not representative of most patients. I am fully aware that I will remain on therapeutic drugs until the time comes when they no longer work or I can no longer tolerate them. I find myself becoming increasingly concerned about end-of-life issues, pain management, insurance coverage, and how my family will fare without me. I am grateful for having three sons instead of daughters, as the health risk to men (if they inherited the gene) is significantly lower than the risk to women.

Medical progress has been achieved for several cancers. For ovarian cancer, not so much. With improved surgical techniques and new therapeutic drugs more women achieve remission and suffer fewer side effects. Unfortunately, detection efforts fall short and survival statistics remain depressingly low. Only 28% of all women diagnosed with metastatic ovarian cancer, which accounts for 62% of all ovarian cases, live more than five years (National Cancer Institute’s SEER Cancer Statistics Review Summary Stage 2000).

September is Ovarian Cancer Awareness Month. I urge all women to be vigilant on their own behalf with their doctors. If you experience any of the symptoms such as persistent abdominal pressure, bloating, urinary urgency, pelvic discomfort or pain, persistent indigestion, unexplained changes in bowel or bladder habits, loss of appetite, lower back pain or changes in your period, which do not improve, please be thorough to find the cause. There are many reasons for these symptoms. But, if your doctor does not share your concerns, please find a new doctor. If you have a high incidence of ovarian or breast cancer in your family, please speak to your doctor about genetic testing and screening. Finally, if you do require surgery, please use a gynecological oncologist as they have received three years of additional training to perform ovarian surgery. For further information, I suggest www.mayoclinic.com, as an excellent online resource.

Ovarian cancer may now be a chronic disease, but it still sucks (is truly awful) and it is still a killer. As women, we must all take care and we must all advocate on our own behalf. Susan R. Frank


Update: Susan R. Frank (the pseudonym she chose for privacy) passed away in December, 2009, three months after she published this article.

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