My Story
Since November of 2011, I had been to various doctors at least seven times. Twice for gyn annuals, twice for yearly physicals, gastrointestinal issues, and also threw in a colorectal surgeon for an exam. Always, with the same complaint, which was constipation. Not only was my throat dehydrated but my stool was as well. During this time, I was unaware that constipation was a symptom of ovarian cancer. No doctor had ever mentioned this to me during my rounds. The only advice ever given by all was to drink more water, increase fiber and to exercise more. I am 61 years old with no family history of cancer. Although I have cancer, I have always been otherwise healthy and have no other health issues. These facts alone, in my opinion, confuse physicians who may view you (a seemingly healthy patient) as being unduly anxious. However, symptoms make one anxious and I don’t think that it is the other way around. At least in my case it was not.
In September 2012, I checked in with my gastroenterologist with my complaints. I had had a clean colonoscopy two years prior as well as clean abdominal CT scans. He wanted to see me back in November but instead (my mistake) because my hemorrhoids were so bad by then due to straining, I made an appointment with a colorectal surgeon. I was declared “disgustingly healthy” despite my complaints. Again the water, fiber, exercise drill. I was also told that as we age motility can change and advised not to bother with the fecal blood test because it was unnecessary due to my clean colonoscopy two years prior.
Next stop annual physical with my primary care physician. December 2012. I am very healthy! Again with my complaints. Well, my dehydration issue just needed to be addressed with more water. Say, sixteen glasses a day rather than eight. I was not diabetic so it was a non issue. Try stool softeners. I then asked, could there be something inside of me that is sucking out every drop of water? No, not at all. Well, OK. But doesn’t a change in bowel habits need to be reported and addressed? Well, try the stool softeners and as you age again the motility thing and don’t forget the fiber and exercise.
February 2013. My annual gyn checkup. Made my complaints yet again. During my internal she felt something but thought that it was stool since I was complaining about the constipation. Upon my rectal exam, she found blood in my stool. I was advised to do the fecal blood test and was sent for an ultrasound as well as a transvaginal sonogram. Both showed nothing and were therefore clean as was my Pap test. However, stool test showed blood and was called into my primary care physician’s office the following day. Don’t panic I was told. You had a clean colonoscopy less then three years ago. Transvaginal clean. I think you have a fissure. Make an appointment with your gastro guy and he will examine you more thoroughly. So I did and he did. Blood again but did not think that it was a fissure. We made plans for a colonoscopy the following week on March 26th, 2013.
Before the colonoscopy, while I was being prepped everyone was laughing and joking including me. After the procedure the joke was up. Doctor was unable to perform the colonoscopy as my colon was compressed by a tumor. (WHAT?) He did perform a biopsy and was sending me for abdominal and pelvic CT scans as well as a CA125. (WHAT IS THAT?) The doctor’s face had cancer written all over it. From that moment on I lost my appetite as well as my mind. Everything became surreal.
March 29th, 2013. (Otherwise known as Good Friday) My husband, my sister and I met with the doctor again. He hugged me. Biopsy showed a malignant tumor in my colon with gyn cells. (WHAT?) Unusual and out of his league. CA125 was elevated at 151. I needed a complicated surgery that would require a team of specialists. I was referred back to my gyn. That I repeat was on a Friday. She called me back on Tuesday and referred me to a Memorial Sloan doctor and ASAP. Could not believe my ears! Not even a local hospital but a cancer only hospital.
How did this happen to me? Me, who is vigilant about doctor’s appointments and have probably never whispered in my life about anything!
My husband drove up to Boston on Easter Sunday to inform our daughter who is now a fourth year medical student at Harvard Medical School and who was doing her rotations at Massachusetts General Hospital. She was able to put me in contact with a brilliant gyn oncologist there, Dr. Whitfield Growdon who fit me into his schedule immediately for examination. He confirmed the diagnosis and was willing to perform the surgery ASAP before I could even get an appointment at Sloan so that is how it went.
The following week, my family traveled up to Boston again for my surgery. Back at home, my friends organized prayer groups. I cannot express to the reader what my dx would mean to so very many people. And the sad part of it all is that with all the caring, no one can truly help you on this lonely road. Prayers, yes, positive thoughts, yes, but I cannot say that I have them for myself. Terror is in my mind and my heart.
April 11, 2013. The walk to the hospital with my entourage was something akin to what I imagine is that long walk to the electric chair. That was just how it felt and I cried all the way. The OR staff was so kind. One nurse held and massaged my feet before I entered the operating theater. Dr. Growdon had Motown music playing at my request. Anything for the comfort of his patient.
Surgery was massive and took longer than expected. Optimal debulking as well as colon resection. What he found was even more extensive than what was showing on the CT scan. When Dr. Whit met with my family after the surgery, he said, “She is safe”. All were stunned by the extent of the cancer. My daughter was in scrubs so Dr. Whit allowed her to see me in the recovery room. She tells me that I said to the one who had just saved my life, “I don’t like you”. He chose to hear, “I think your mom said she likes me”. Typical of him and by the way I don’t think that it is possible not to like him.
Pathology reports indicate low grade serous C stage 3. My doctor believes that it begins as something else in stage 1 and 2 (they don’t know what) and then morphs into stage 3 and 4. I remained in the hospital for seven days and in Boston for one month. My family with me every step of the way. We all live in New Jersey so no easy task. In truth, post surgery recovery took me about ten weeks and that was worse than the chemo which commenced six weeks after surgery.
Six rounds of carbo/taxol every three weeks makes me think of a prizefighter in the ring. After each round I was worn but still standing much to everyone’s surprise as I was only 80 pounds by that time. The new feather weight champion of the world, Angela Dilger.
Chemo finished three weeks ago. CA 125 is 27. Chest, pelvic and abdominal scans clean. All good news (remission, NED) but I am not unaware of the recurrence rate and still cannot wrap myself around this cancer thing. Recheck every three months with Dr. Whit for the next two years.
Although I was a determined advocate for my body changes, four doctors did not pick up any abnormality. How can this be? I am now on the Patient Review Board for The Ovarian Cancer Action foundation in London. The proposed new research will take years. It is necessary, but more to the point, it is the doctor in the clinical setting who needs to be aware of the subtle symptoms and have the knowledge to provide the proper tests. The Ovarian Cancer Action group is advocating for CA 125 tests to be given routinely as well as a transvaginal ultrasound for every woman. Not any of my friends, or myself, had ever heard of the CA 125 until I was diagnosed. I, of course, tell everyone I come in contact with but that is not enough.
Yesterday, I read the new book, “Cured: My Ovarian Cancer Story” By Joyce Wadler. She was treated at Sloan since 1995 first for breast than ovarian cancer. She had the same symptom as myself, constipation, and while being followed every six months at Sloan for the breast cancer, the ovarian cancer was not detected for a couple of years. Sad to say that things have not progressed since that time as far as a diagnosis goes. Her oncologist told her “bad luck” which is just what my daughter the med student has said to me.
So ladies, fingers crossed and pull out every good luck charm that you’ve got. I know that I have and maybe this is as good as it gets. Or maybe if we yell loud enough (and I know that you all can) the powers that be, whether that be physicians, insurance companies or our government will finally hear the call. And whatever you do, DON”T WHISPER!