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Stories of Inspiration

My Ovarian Cancer Journey: Everything isn’t Menopause

By May 14, 2021June 1st, 2023No Comments

“I am sorry, Mrs. Tener, but you have all the markings of ovarian cancer.” I heard these words. The ER doctor must be talking to someone else, not me. I immediately thought of our daughter Marisa’s pending marriage in five months in Hawaii…would I even be alive then? Ovarian cancer sounded like a death sentence to me…I knew it was not a ‘good one.’ How did I get here? Definitely with the help of all the doctors who missed this diagnosis- my gynecologist, primary doctor, two radiologists.

At my check-up in January, I told my gynecologist I wanted my IUD removed, I was eight months into menopause. The string was lost, I had a retroverted uterus – it would be super painful and he said forget about it. I remember the exam was particularly painful and also mentioned intercourse was painful too. Menopause he said. I asked him again about a CA 125 blood test for ovarian cancer. His answer was always ‘The test is not reliable; there are too many false positives that lead to unnecessary surgeries.’ In February of 2009, I started noticing little painless pings on either side of my pelvis. My stomach seemed a bit bloated and I could not hold my stomach in. I urinated at least four times a night; I felt a weird pressure in my lower pelvic area when I got out of bed. I spoke to my gynecologist all the time as he is my husband’s oldest friend. He attributed all my symptoms to menopause. I again asked could it be my IUD, he said no- it was the only thing he would be right about.

My husband and I went to the Bahamas in February and I felt lousy the entire time – I had a constant feeling of heaviness in my belly and was not hungry, always feeling full. The pressure in my lower pelvis was consistently bothering me every time I got out of bed. I was urinating quite frequently and also noticed sitting by the edge of the pool, rectal pressure that I thought were hemorrhoids, which had not bothered me in several years. Finally, in April, my gyno sent me for a pelvic ultrasound to locate the string, because I was adamant to remove the IUD. The technician couldn’t see the string and be having a hard time, so she did a transvaginal ultrasound.

The radiologist report said I had fibroids, my ovaries ‘could not be visualized.’ What did that mean? To top it off the report said ‘malignancy cannot be ruled out.’ My gyno said because of my age and menopause they were too shrunken and small to be seen, and the malignancy comment was there to “protect their asses.” Menopause. My primary just deferred to my gyno and sent me for a kidney/bladder ultrasound which showed huge fibroids. I immediately told my gyno I wanted a hysterectomy and he said to see a gastroenterologist.

The appointments were made and as I waited for early June, I was so fatigued and uncomfortable I could barely function. I insisted on the CA125. My gyno did it grudgingly, examined me, and said my fibroids were huge and he had noted in January my uterus was distorted. News to me.

He told me the CA125 was useless, ‘By the time they find it, it is too late anyway. Anything over 1000 you are dead.’ Mine was 1900. He told me to let him know what the gastroenterologist says. Four days later my husband insisted on going to the ER at the University of Pennsylvania. After 10 hours, after a simple cat scan, we received the grim diagnosis. Cut to July 2020. I am now grateful beyond words to be an eleven-year survivor of Stage 3C epithelial ovarian cancer.

Three days after diagnosis, I had an optimal de-bulking (with complications of course) and 7 rounds of chemo. Turns out, with NO family history I am positive for the BRCA 2 genetic mutation. In July 2013, I had a prophylactic double mastectomy with a FLAP reconstruction. Unusual I was told, but I have had chronic Post Mastectomy Pain syndrome ever since. Eight months later, my cancer recurred – another surgery and 6 more rounds of chemo.

I was so fortunate to take part in an immunotherapy clinical trial, whereby I received 30 vaccines comprised of my own tumor and blood cells. I also had 18 more rounds of compulsory chemotherapy during the trial. It is a miracle I am alive and I know it. I am grateful for every day. I will take every pain, memory, and side effect for the gift of life. My dream was to take my two grandsons to Disney World and we went last year to celebrate my 10-year ‘cancerversary.’

Forgive me for this rambling tale – we all have our own unique journey – I try to live in the moment, but as we know, our lives can change in a split second. Ovarian cancer has taught me that I can survive and endure things that I could not have even imagined before my diagnosis. The standard answers are all true in regard to appreciating every moment of life; however, I feel prior to this, my life coping skills were not as strong as they are now.

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