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Large Cell Endometrial w/Neuroendocrine Features

By Paige - May 2, 2009

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My story begins in June 2008. I was a 37-year-old female heading into my annual well woman exam. My GP found somethig that didn't "feel right" during the manual exam and sent me for a pelvic ultrasound. Once there, they found 2 large fibroids, one the size of a softball and one the size of a golf ball. Next, I visited the surgeon to discuss my options - and there were many - but I ultimately decided to have a hysterectomy leaving in the ovaries and tubes and removing the uterus, cervix and fibroids. I had heard that laparoscopic surgery was a breeze and asked if we could do that in my case and the surgeon said yes, we just need to shrink down those fibroids by giving a Lupron shot and waiting 3 months.

Sep 08, 2008: I get the shot, and we wait until my scheduled surgery 12/30/08. Meanwhile, I am having continued symptoms of pinkish to clear liquid discharge every day. I tell my surgeon, she takes a second look, and writes it off as symptoms from the fibroids.

Dec 08. 2008: Surgery goes fine, but the fibroids did not shrink so she converted to a total abdominal hysterectomy - nothing appeared abnormal

Jan 7, 2009: I get the call from my surgeon to come in for a check-up, much earlier than she originally told me I needed to come in. She gives me the news that they found cancer, but they aren't sure what type and have sent it to a noted endometiral tumor specialist at Penn State. A few days later they confirm the type - large cell with neuroendocrine features. Grade 3. At this point I am considered Stage 1C becuase it had invaded 67% of my myometrium. But they can't say for sure because they haven't surgically staged me and removed any lymph nodes.

Jan 19, 2009: I get my first CT scan which is clear

Feb 23, 2009: I start chemo - I'll be going for 6 rounds of Cisplatin+Etoposide at 3-days a piece for 5 hour IV infusions each. Somewhere in the middle I'll get radiation - but the range and type of radiation is still undecided.

Mar 4, 2009: I get my first PET scan which reveals 3 lymph nodes involved - I'm now considered stage 3C. One inguinal lymph node, one periaortic node and one portal node (just behind the liver and near the inferior vena cava). The portal node is the largest at approx. 3cm which makes the Dr's think it's a metastasis or tumor - but again they aren't sure.

I'm having almost no symptoms from chemo except hair loss. I am lucky :) Early on I had some chest heaviness, they gave me an EKG and chest X-ray to check into it - but could find nothing and now it has gone away.

In early April I take my work up on a free mammography. I figure with everything going on, it will be good to get baseline images as a starting point, even though I'm 38. Little did I know they would find some calcifications and ask me to come do a re-scan.

Apr 22, 2009: I have my 2nd PET scan and 2nd breast re-scan. The mammography still shows questionable calcifications so they recommend a needle biopsy. At first I think I'll just wait and re-scan in 6 months so as not to interrupt my current treatment, but later change my mind.

Apr 28, 2009: I met with my oncologist just prior to round 4 and he confirms that they think I may be stage 4 because the portal lymph node is out of the pelvic/abdominal region and is considered extra-pelvic disease. He also tells me that my lower 2 nodes have significantly reduced, but the upper node is unchanged. They will take my case to the tumor board on Monday, 5/4 and decide next steps. He thinks they may start me on targeted radiation to the upper node soon. Also, I read in my PET report that there was minor uptake in one of my axilla nodes near the left breast. This and suggestions from friends and my GP prompt me to go ahead with the needle biopsy - this is scheduled for Friday, 5/8.

That brings my story up to date, but what the future holds, who knows?