Gynelogical Cancer of Canada (GCC) invites you to join our Sisterhood of Survivorship. Inspire other women who share your unique journey and experience the power of offering hope to others.
Visit GCC to tell us your story, or to receive information. Be inspired by the stories on our GCC Facebook, or contact us.
 |
 |
 |
 |
| D. Huber | Sheila M. | Linda M. | Joan S. |
On Nov 1/07 I was diagnosed with stage 3C ovarian cancer after having an emergency hysterectomy. After reporting symptoms to my family doctor and being dismissed, to a gynecologist and being misdiagnosed, I went to the ER five times. The first visit was the “Irritable Bowel” diagnosis after only an x-ray for severe pelvic and abdominal pain, urinary urgency, back pain, extreme fatigue, bleeding after menopause, pain during intercourse. On the 2nd ER visit I was given the “Constipation” diagnosis, my adamant request for an ultrasound denied and literally laughed at. On the 3rd visit to the ER I was given morphine and stayed overnight to get the pain under control. Finally I had a CT Scan but was not given any results. On the 4th visit to the ER again I received morphine to get the pain under control, told to go home and wait for surgery, unknown how long, the gynecologist refusing to look at or discuss the CT Scan results with me. My family doctor finally agreed to get an urgent ultrasound for me – it indicated a mass. On the 5th visit to ER by Ambulance I received a lecture from a nurse, and two doctors before I was examined thoroughly. Unknown to me they finally did a CA125 blood test, it was just over 300. Unknown to me they finally examined the CT scan results and the ultrasound. The results prompted a different doctor to refer me to Dr. Al-Hayki as no other doctor would accept me as his or her patient. Dr. Al-Hayki came to me on the evening of Halloween to examine me and 30 minutes later I was in the operating room being seriously questioned by Operating Room people as to how I managed to get myself up on the list – no joking. By the time the surgery was over it was Nov 1/07 and my husband and I were in shock to hear the results. It was a horrible week in the hospital – I felt very alone and scared as hell even though many people rallied around to support me. I had a chemotherapy port surgically placed in my chest and had 6 rounds of carboplatin, paclitaxel and Avastin. After that I continued with 12 more Avastin treatments. I went to the chemo room for my treatments every three weeks for a year. Now I am in remission and very grateful to be alive!
I worked with a local support group to help raise awareness, as I felt doctors and women alike needed to be more aware of the symptoms. This support group soon came to be a stumbling block for me – as they refused to become more vocal, and were then taken over by the national group called Ovarian Cancer Canada. I was alarmed that more doctors and patients seemed to not know that a Pap Test does not screen for many gyne cancers, only cervical. Shocking too is that many doctors don’t seem to know about the effectiveness of a CA125 blood test combined with an ultrasound, or even what the symptoms are. I was never asked for my family history which included breast cancer, ovarian cancer, leukemia and put me at high risk for this horrible cancer. Many people suggest there are NO symptoms, or symptoms that “whisper” – this is very misleading if not downright untrue. There are symptoms and women need to be aware so they can tell their doctors and know what tests to ask for.
Other patients like me, who wanted patient driven support for patients by patients decided to come together to support each other and fill the gap we saw in raising awareness in Saskatchewan. Many doctors were and still are very ignorant about cancers of women’s reproductive organs, both in urban and rural offices, but especially poor in rural offices. This group came to be known as OCATS, Ovarian Cancer Awareness & Treatment in Saskatchewan. We are currently focused on ovarian cancer because of the high mortality rate but we have members who are dealing with other gynecologic cancers. There is now another community of women building called GCC, Gynecologic Cancer Canada – to share information on all gyne cancers and provide support across Canada. Check out the GCC Facebook page for the Sisterhood of Survivorship.
OCATS has a bi-monthly newsletter, has written Recommendations towards the improvement of gyne oncology care in Saskatchewan and presented them to the Ministry of Health, has monthly support group meetings, provides support one-on-one support to patients in person at home or the hospital, by phone or email. We are also involved in a number of events to raise awareness Teal Panties Campaign, Benefit Dinner on September 1st, Wear Teal Day on Sept 15th. Please feel free to call us for information or support at any time.
D.H. Regina, SK
July 27/09