Survivor Story: Michele Payne
My name is Michele. I am a survivor of low grade endometrioid carcinoma. My story started like many others with complaints of bloating, weight gain, feeling very full quickly, excessive bleeding and back pain. My uterus was removed for fibroid tumors in June of 2014. My ovaries were left in. I was relieved and thought all my gym problems are over. A year later in the fall of 2015 I was still having bloating and pain. The pain became so bad that I went to my doctor several times and she ordered an X-ray.
That showed my intestines were not emptying properly. Then she sent me for a CT scan. That’s when I got the call that they saw a large mass covering both ovaries. An MRI was ordered. Confirmed tumor. I was referred to gyn for transvaginal ultrasound. Image of tumor was clear. Referred to gyn oncologist surgeon. There he scheduled a hysterectomy. No one mentioned cancer as they don’t know until they do the surgery. But chances were high I had ovarian cancer. I had no family history of gyn cancer.
After the surgery I woke up to the cancer diagnosis and a large incision running from my pubic area to above my belly button. Diagnosis: clear cell, mucinous and endometrioid stage 2b. Doctor was worried because of the rare kind. I underwent 6 rounds of frontline chemo. Scan and biopsy confirmed small tumor in sigmoid colon area. My first recurrence; which is not unexpected with low grade rare cancers. I did another 6 cycles of different chemo drugs. Scan indicated tumor very slight and ca 125 was 14.
A few months went by and upon exam and ca125 cancer grew. I tried parp inhibitor Rubraca and also hormone Megace. No luck. Tumor was 9 cm. With no more options we tried radiation. 20 days straight of targeted radiation therapy. The tumor shrank to 6 cm. Giving my body a rest, I decided to try plant diet and other supplements to help my immune system recover. The tumor continued to shrink. Over a year out of radiation my tumor was 3.2 cm. Ca 125 is down to 11. I’m considered stable. In this journey I had other opinions from Sloan Kettering and Dana Farber. Both confirmed after looking at my tumor tissue I had endometrioid carcinoma only. Not clear cell. No BRCA in the bloodline but BRCA 2 in the tumor tissue. I also have mismatch repair deficiency not hereditary. I have somatic mutations which are acquired after birth.
The mismatch repair qualifies me for an immunotherapy drug if I need it.
This journey has been very emotional, and I get strength from my spirituality, my support group and family.
It is so important to listen to your body and also be diligent about talking to your doctors and advocating for yourself. Getting other opinions and talking to survivors. Education about this disease is a must. Every year I attend the OCRA conference. It has been such a great experience for gathering information, learning about treatment options, research and advocating. I’ve made life-long friends from all over! I Consider myself one of the lucky ones. Giving up is not an option.
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