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Bea’s Story (Endometrial Cancer)

Bea's Story (Endometrial Cancer)My name is Bea, and I’m 41 years old. I am an endometrial cancer survivor and have been in remission for 15 months. It took over a year to determine that my diagnosis was cancer. I now work to advocate for endometrial and uterine cancer awareness.

During the summer of 2011, I was getting ready to have knee surgery on my right knee. During the wait for my knee surgery, I noticed extreme pain in my left hip. Both my primary care and my orthopedic doctors indicated that it was more than likely due to the weakness in my right leg. I went ahead an had knee surgery in July 2011. I recovered from my knee surgery very well, but my hip pain continued. I continued to talk to my primary care physician about it because there is a history of ovarian and colon cancer in my immediate family (both sisters, my father, and my maternal grandmother – all presented with hip pain). I also had heavy periods, but my doctor indicated that was more than likely due to a 130 pound weight loss that I had maintained through gastric bypass surgery.

In April 2012, my doctor finally decided he’d heard enough about my hip pain and sent me to a rheumatalogist. That doctor did a complete blood panel. He was about to give me a cortisone shot in my hip but he decided against it. He sent me for a spinal MRI instead. When the MRI came back it showed multiple cysts on my left ovary and the onset of spinal stenosis. The stenosis sent me to the physical therapist, and the cysts immediately sent me to my gyno.

My gyno although concerned from knowing my family history, was not overly concerned. He sent me for a vaginal ultrasound. By this time, it is May. I went for the ultrasound. During the ultrasound the technician indicated that I had a number of fibroids in my uterus. She could find no evidence of my ovarian cysts though. She sent me home to wait for my results. Two weeks later (early June), my gyno called and said he saw a small area of concern in my uterus but thought it may be a fibroid dying out. He asked me to schedule another ultrasound. The second ultrasound still showed the area of concern, so I was sent for a pelvic MRI. It was scheduled for the first week in August.

My husband and I went away for the forth of July holiday. On the fourth I was out at the sandbar having a great time and got an extreme pain in my right side. It went away and I didn’t think much of it. We went out to eat later that night with my sister and her husband. During the meal I felt kind of sick, so I left early to return to our beach house. The next morning, I got up, bent over the sink to wash my hair and nearly passed out. I was extremely ill for the next two days, so bad that I went to a clinic on the island. They determined I had a virus, so my husband I and left our vacation early. Two weeks later I was no better and my extremities were very swollen. My primary care doctor ran a full diagnostic but was unable to find anything wrong. He thought I may have had myocarditis, so he sent me in for an echo-cardiogram. It was scheduled the same afternoon of my pelvic MRI.

On the way home from the echo, my gynecologist called. He already had the results of my MRI from that morning. There was a lesion in my uterus. He sent me immediately to a gynecological oncologist. A biopsy showed it was pre-cancerous. I was scheduled for a radical hysterectomy on August 22nd. My oncologist said that it was a precautionary measure, and I need not worry. Surgery would be it and I’d be on my way home.

I went in on the 22nd to the University of Maryland Medical center for my hysterectomy. I was 39 years old, almost 40. I woke up from surgery to my husband crying. My husband never cries. His reaction there and then told me the truth – I had cancer.

Stage III 2c endometrial cancer – spread four mm into the lining of my uterus and through 19 of 21 lymph nodes.

I subsequently went through sandwich therapy: three cycles of chemo (paclitaxel and carboplaten), followed by 25 radiation treatments, three brachytherapy treatments, and three more cycles of chemo. It was the worst six months of my life. But I was in remission. Surgery had gotten all the cancer.

I am now, 15 months later, cancer-free. I went through genetic testing which determined I had Lynch Syndrome – a mutation in a gene that causes colon, ovarian, and endometrial cancer. As both cancers had been on both sides of my family, there is no way to tell which parent passed the gene on. I advocate for endometrial cancer awareness and genetic testing.

I fought like a girl, and continue to do so.

Bea
Delaware
Submitted 11/21/2013

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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4 comments

  1. Hi Bea

    You should read my story. Yours is so familiar to me. I wanted to know if you have had any genetic testing. I think you should be tested for Lynch Syndrome. It is a genetic mutation of they PMS2. There three others that are involved with lynch but look it up online. The mutation make you more likely to get colon, uterine, ovarian, melanoma, bladder, stomach cancers, etc. Some up to 80% greater such as colon.cancer. you sound like perfect family background. I have Lynch and go through testing every year, almost from head to toe. I am a endometrial cancer survivor with a lot of the same family history. I urge to research.
    Thanks
    Michelle

  2. Hi Bea,
    So glad you are cancer free!! you are doing amazing things with all of the fight you still have in you!! i would love to know how you got started and ho i can start awareness on my side too!

    our stories are very similiar. I was misdagnosed by doctors for over a year…they said i was blocked up…premenopausal…whet belly- too much wheat in my diet. back in January i continued with feelings of distendedness…feeling full all of the time and just overall pain. after leaving the doctor again..and put on gas relief pills…a few days later i had a cycsts that ruptured. they said they would just disapate into my system- at that time they did not take note of a mass that was already there at 2mm.- whether they thought it was another cycst i do not know. after heavy bleeding and changes in my period for months..they said i was producing too much estrogen and not enough progesteran and i was premenopausal. the bleeding was just too heavy and i needed more answers. i had a vaginal scan which they said was inconclusive…and finally an MRI- which showed a mass on my uterus and ovary. suregery was recommended immediately. a week later we found out i had endometrial cancer. Stage 3A. the cancer was in my uterus first and had traveled to my ovaries. it was just overwhelming. i had a full hysterectomy where they removed everything …and tested everything. mine had not traveled to my lymph nodes but i have been diagnosed with a rare cancer- clear cell andocarcinoma. there is very little research on this and the best treatment is not known as they have few patients with this. i am in the same treatment as you had Bea. taxol & carboplatin- along adjunct radiotherapy in a couple of months. i am just on my 2nd chemo and i truly give credit to all you ladies who have gone thru this!!! YOU ARE ALL AMAZING!! i have a wonderful support system that keeps me going as well.

    i also have been diagnosed with Lynch Syndrome as well. how soon after your treatments did they have you go for endoscopy and such? my biggest issue is that it is a 50/50 that i passed down this gene to my son…not sure on how to have this conversation with him- but i do want him tested so we can do everything preventative as necessary. i am too an advocate for the genetic testing and of course for endometrial cancer and any cancer!! early screening…being an advocate for your own health ladies….as too often they look at our chart and we get ‘pigeon holed’ as they say. they heard the same problem but are not coming up with different solutions! if you can find everything from an MRI or a CAT scan or a vaginal Cat scan then why not do it!! i am at the beginning of my treatment and have aways to go! keep the motivation coming ladies.( as you know it is easy to slip into negative mode) ..you are the true heros of today!!! HUGS!!!! LET ME KNOW HOW TO HELP BEA!

    • Hi – sorry to hear about your story but go you for fighting!

      The biggest thing I do to spread awareness is through my blog. You can see it here: http://www.thehappyhysterectomy.wordpress.com. I also work closely with my cancer team at the University of Maryland for the latest on research and treatment.

      My biggest thing is “Don’t ignore me!” Speak up and make your concerns known!

      As for your son, well, just sit him down and tell him. It’s important for us to know what we can be potentially exposed to. Known you history so you know what symptoms to look for.

      As for my testing, I have a special twist to my life…I’ve had gastric bypass, so they can not do an endoscopy on me because it is too dangerous. I’ve had colonoscopies since I was 24 everything three years, and now they are bumping it up to yearly. Mostly I listen to my body. If something doesn’t seem right, then I’m on it. I put a call in to my oncologist. He’s probably sick of hearing from me.

      Good luck with your treatments and visit my website. Look forward to learning more about you!

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