I am an active 65 years old, mother, grandmother and wife. My parents and grandparents all lived long long lives. Cancer took me completely my surprise. Last year 2019 I went to my Dr about loosing too much weight and a change of bowel habits while on a diet. I am an old nurse and while the weight loss did surprise me, who complains about losing weight. Being healthy and very active cycling, swimming as well taking care of my grandchildren a couple of times a week, why would I suspect anything was wrong. However this year 2020, I developed abdominal pain. Covid made testing just about impossible and long waits for imaging. I was a good advocate for myself. I phoned my GP regularly updating on my declining condition to her. On my last call to her, I told her everyday my prognosis was getting worse. I ask if there was any blood tests for cancer When my CA125 came back elevated, I connected all the dots and knew that all my symptoms were ovarian cancer. My Gp sent me to the local ER for imaging with the results being ascites and bulky ovaries for my age. The ER Dr read the report to the gynecologist. I never warranted a visit or examine from the gynecologist. It was determined that these results were normal and that i was fine with no ovarian tumour or anything "sinister" happening. After a lengthy discussion / argument with the Dr about my symptoms and what I thought was happening, she consulted a gynaecologist who recommend that I have another CA125 and scan done, in six weeks. After 3 weeks, with increased symptoms I appealed to my Gp who once again did more blood work. This time my CA125 had quadrupled and with that, I got called to see the gynaecologist. For the first time I had a complete physical and a tumor was palpated. I asked to be refered to a gynecologies oncologist but was told I needed a diagnosis before being referred. I later learned from my oncologist that a CA125 count of over 500 is almost always stage 3 ovarian cancer. One week later after a laparotomy, I was diagnosed with stage 3b ovarian cancer which turned out to be primary peritoneal cancer 3C.
Not being treated by originally by the oncology gynecologist put me in a worse condition. First, I was subject to two surgeries in four months, Second, having surgery before chemo is not standard practice, usually you have 3 chemo sessions to shrink tumours before surgery and then complete the last 3 sessions. Third, the gynecologist who did the surgery did not remove my uterus and in doing so,made it impossible to remove the uterus and when on my second major surgery, I had my omentum removed and debulking. Furthermore when removing my fallopian tube and ovaries and tumour, the cancer seeded at the laparotomy port site, which is why it is recommended to have the surgery done by a oncologist gynecologist.
I am extremely angry with my original treatment at my local hospital. Not believing me and not putting all the pieces together, elevated CA125, ascites, and bulking ovaries and pain and declining physical condition. The treatment that I had original wanted and later received at the cancer clinic was fantastic. I was listened to and every step explained.
I think I am a strong advocate for myself and yet even with good understanding of medicine I was not heard. If a woman with an elevated CA125, bulky ovaries, and ascites as well as other symptoms is not diagnosed, how does anyone get diagnosed?
I can not wonder how my outcome would have been if I had seen different Doctors and had been treated by oncologist gynecology. While this cancer is a chronic disease, I think I would have been a better place had I received the correct care and treatment.
My advice to others, do not worry about being a nuisance to your Dr. Weight loss and change in bowel habits are two of the first symptoms of ovarian cancer. Go to a different hospital if necessary. Keep a binder of reports and information, which you, the patient are allowed access and then ask questions accordingly.
Do not give up, ever.