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Just An Update on HG Serous Ovarian Cancer

Gynecologic Cancers | Last Active: 6 days ago | Replies (65)

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My name is Linda from New York, and I am 76 years old. I have been diagnosed with high grade serous carcinosarcoma p53. I intuited something was wrong and insisted on a sonogram of my endometrial lining. Then I insisted on a pap smear but Medicare said I was one day short to receive an annual physical. I had to wait to get an appointment months later due to the 1 day shy of my yearly annual exam. But I insisted I have an exam due to a round smooth lump in the vulvar tissue. I asked for it to ne excised but doctor said no. When I had pap, the test showed abnormal cells. It wouldn't be until 6 months later I could be scheduled for a D & C and biopsy of the lining. March 11. CANCER. Then I chose my oncological obgyn surgeon and saw him March 23. He immediately scheduled me for surgery on April 2. I had a robotic full radical hysterectomy. April 30 was my first chemotherapy. I saw the surgeon May 4 and he said the stitches in the vaginal cuff and abdomen have healed. He may want to lower the dose of chemo and I said no. CA 125 was negative. I'm having constipation and discomfort in intestines where they have shifted into the space where the uterus was. Taking Milk of Magnesia. Today is May 7. Still having some side effects from peripheral neuropathy, but it's getting better. In 14 days I begin second chemo. It is brutal. And I read that within 1 to 3 years this cancer can reoccur anywhere in my body by 41-50% How does one endure and survive from this aggressive cancer. I was staged at 1A. Nothing grew outside of the uterus and lymph nodes were clear. Pelvis washing was negative for cancer cells. Müllerian Tumor (MMMT): Also known as carcinosarcoma. Explain. Also tumor cells are positive for MLH1, PMS2, MSH2, MSH6; no instability is identified. The presence (positive staining) of all four mismatch repair (MMR) proteins means the "spell-check" machinery in the cells is functioning normally. This results in no identified microsatellite instability (MSI), which helps my medical team determine the best treatment path and suggests the tumor is likely not associated with Lynch syndrome. Serous carcinoma (ovarian or uterine) is typically treated with a combination of platinum-based chemotherapy, specifically carboplatin and paclitaxel, which serves as the standard of care. I'm on 175 mg of paclitaxel or Taxol. It frightens me that this aggressive cancer can be microscopically growing in any part of my body. I'm also going to receive vaginal radiation. I need a support group. Thank you for reading. God Bless everyone with this aggressive cancer. Praying we will all survive this. Linda

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Replies to "My name is Linda from New York, and I am 76 years old. I have been..."

@lindybowers Linda, first I’d like to share that you did what we all here recommend for one another. You did and still advocate for yourself.

As @jenelleseaman shared Stage 1a is encouraging. The cancer you were diagnosed with is an aggressive as you said. You are doing everything you can including chemotherapy and eventually radiation therapy.

Hearing the word “cancer” is a shocker. When I talked with my doctor after hearing I had cancer my mind was in an altered state. I got lost on my way home, making a wrong turn in my car, on a familiar route. When I finally “woke up” in a neighborhood I didn’t know I thought - where am I anyway? I straightened myself out, made it home, and then just collapsed.

You are the best judge of what you can do for yourself. Age is just a number and from what you’ve written here I’m envisioning you as a very healthy and active 76-year-old woman.

I am now almost 7 years out from my initial diagnosis of endometriod endocarcinoma FIGO Grade 1, Stage 1a. I had a recurrence in the vaginal cuff 4 1/2 years ago. I had radiation therapy - external and brachytherapy for the recurrence. My physical exams and imaging have all been NED (no evidence of disease) since then. I still wonder and worry that something microscopic is growing in my body. With time, that worry doesn’t occur as frequently.

When I worry, and I do, I let the worry be there. I don’t try to push it away or distract myself for too long. I tell myself “just because I think this does not make it true”. I also look at my worried nature as a bit of a catalyst. I don’t sit with anxiety very long. I allow anxiety to be there, and figure out what the anxiety is telling me. Is there something I need to do? For me, that something can be moving my body. Going for a walk, stretching, doing yoga.

We are here for you and our support group has women with a lot of experiences that will help you.

Do you have a spouse, family members or close friends for support? A mental health therapist?