“My Voice” by Kendal Seidel

Kendal Seidel - 'Survivor'

My name is Kendal Seidel. I was diagnosed at the age of 34 with stage 3c ovarian cancer. My story, however, begins much earlier. I was adopted as an infant. My adoptive parents had no knowledge of any negative medical history from my biological family. I began having some “female” problems very early on, almost from the time I began menstruating. Things got worse as I got older, but I was told by numerous doctors and clinics that this was simply “my normal”. When I was about 23, I got a phone call from my biological sister. Her intent was to convey to me that my family has a long history of ovarian cancer. It was her hope that I would have children early and then take preventative measures. I had no children at that point though I did want to conceive. I suspected I may have had problems in getting pregnant. This news added to that concern. I took this information to other doctors over the years. I was told over and over that I had ovarian cysts, possibly endometriosis but not to worry. I was put on numerous birth control pills, having been told this would help resolve my problems. It was conveyed to me that even with the family history of ovarian cancer that I was not at risk, due to my young age. I went along with this advice, believing the doctors must know what they were talking about.

In September of 2000 I, was having tremendous amounts of pain causing me to double over at times. My belly was swollen, but I have always been chubby in the middle so I dismissed it. I thought I had developed Crone’s Disease or IBS, as my bowel habits had changed considerably. I went to a local county hospital and had an ultrasound done (transvaginal). The radiologist report noted that my right ovary was enlarged, probably due to an infected hemorrhagic cyst and that there was an enlarged lymph node, secondary to the probable infection. I was also administered a CA 125 test. Having given me directions to return in 6-8 weeks for another ultrasound, I was sent on my way. I called the hospital for the results of the CA 125 about a week later; the test came back 185. I knew enough at that point to seek additional medical advice. After several phone calls I was given an appointment with a gynecological oncologist.

I met with the specialist late September. During our consultation, to my relief, I was told that most likely this was a bad case of endometriosis, maybe one ovary may have to come out, not to worry, ovarian cancer did not cause that pain I was experiencing and that I was too young to be a likely candidate for ovarian cancer…hmmm…what about the history??

October 13, 2000. Friday the 13th, no less…I was admitted for what I was told would be a minimally invasive procedure, a laparoscopic surgery. I would be going home that night or at most would be in hospital for a day or two. I had signed papers saying that I authorized any necessary procedures… (Did not want to have to be put to sleep twice).  When I awoke from the surgery it was immediately very clear that something was very wrong. I did not expect to have a tube in my nose or to be bandaged as I was. It was my then boyfriend who broke the news. Stage 3c ovarian cancer…Total abdominal hysterectomy, bi-lateral oopherectomy, omentectomy, appendectomy, resection of my sigmoid colon, had my liver surface lasered, not to mention lots of lymph nodes out. What happened to endometriosis? Turns out I had that too. The least of my problems.

I was in the ICU for a few days then moved to the med-surg ward. Chemotherapy started as soon I was able post surgery. All I could think was “how did it get this far?”

I tried and tried to get someone to pay attention to the family history as soon as I knew of the information, but I, like so may, deferred to the physician. They certainly knew better than I did.

Many lessons have since been learned on my part. My sisters, my brother and I have all been tested for the BRCA genes. One sister and myself both tested positive for the BRCA 1 mutation. She was diagnosed with stage 3c ovarian cancer almost a year after me. At my insistence, she sought out additional medical advice and it turned out to be good. We (my family) are now big believers in the patient’s having a voice and that voice should be heard.

I will be celebrating nine years cancer free this October 13th…This in spite of what the oncologist told me about having less than a 50% chance to make it to five years…My survivorship began on day one of my diagnosis. As badly as it sucked to be diagnosed with cancer the diagnosis gave me the answers I needed to battle back. I got VERY lucky. Most of my friends with ovarian cancer have died or are dying. Ovarian Cancer is rarely diagnosed in the earliest stages. There is no screening test. All we have is our voices.
That is what it is all about for me… giving a voice to ovarian cancer. A voice for all the women who are touched by this disease and are not even aware of it…A voice for the daughters and sisters who may be at risk because their grandmother passed of ovarian cancer at a time where it may have been called something else. A voice for those women who are diagnosed with breast cancer and may be at increased risk for ovarian cancer. I was given a gift. For whatever reason the late stage diagnosis was merely a hiccup in my life. I intend to repay the gift I was given each day with the hopes that I can prevent what happened to me from happening to others. I want all women to be aware of the symptoms of ovarian cancer. I will continue to share my story.

Thank you for letting me share my story.

Kendal Seymour- Seidel