Ovarian mass/appendix originated?

Amydee0484

I am 32 years old.. always been pretty healthy.. starting in dec 2016, I began to have some right lower quadrant discomfort... but I had been having bouts of constipation/diarrhea so I didn't think much of it.. in January i started my menses and just never stopped.. I had always been consistent. 3 days done.. so I scheduled an appt for my gyno.. on feb 14th she sent me for an ultrasound because she thought my uterus felt enlarged.. also some labs.. ultrasound revealed a right ovary mass measuring 7.5x4.5 and labs CA-125 -141 and CEA 7.5.. I was referred to a gynecological oncologist. i seen her March 2nd 2017.. she scheduled me for a CT,labs, and surgery. On Monday the 6th the CT revealed my ovarian mass had grown to 7.8x14.5 and labs CA-125- 191 and CEA- 10.5... had colonoscopy  on Tuesday that was clear.. On Wednesday the 8th she informs me it will be a complete hysterectomy because the CT has also shown a possible mass in left ovary.. I awoke with the news that they also had to take my appendix, bowel resection( took cecum and small portion of small bowel). And told me I had stage 3 ovarian cancer with endometroid qualities.. Little over a week later I go to have staples removed (over 50).. of course my incision popped open in 2 places so I'm now glued and steri-striped( because thats my luck anymore ).. she also informed me at this appt that pathology report is not final but that it appears to have originated in my appendix, spread to small bowel and ovaries.. so new diagnosis stage 4 colon cancer .and that it had carcinoid/signet cell features. they are referring me to a GI oncologist now... I'm reaching out hoping that someone else has been here or to anyone who can offer advice... 

Thank You!! 

Amy

abrub

That's how my appendix cancer was found

Amy, you are describing what happened to me. And I know of many women who were treated for ovarian cancer when it had originated in the appendix - useless treatment that doesn't apply.

 You must get to an Appendix Cancer specialist before any further treatment.  While there are similarities between the treatment for appendix cancer and colon cancer, there are also important differences.  Most GI oncologists don't know this cancer well as it is so rare.  You may have to travel to find a specialist.  While I have an excellent research hospital associated with a major medical school near me, I travel 175 miles each way to Memorial Sloan Kettering in NYC for my care and treatment.  Of note, it has been almost 10 years since my diagnosis.  And yes, mine was Stage 4 as well.

I can't emphasize enough the importance of getting to an appendix cancer expert.  Where do you live?  I might be able to help.  (I've been very active in the Appendix Cancer community since my diagnosis in April, 2007.)

I'll send you a private message with this info as well.

Alice

Amydee0484

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Thank you for the response.. I Have been getting treated in St. Louis Missouri at Barnes Jewish Hospital. That is the closest facility I found for at the time "gynecological oncology". I will def look into a specialist for appendix cancer. I am still awaiting the final pathology report.. hopefully that is done early this week, since im

sure no one will accept me without that.

abrub

Amydee0484 said:

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Thank you for the response.. I Have been getting treated in St. Louis Missouri at Barnes Jewish Hospital. That is the closest facility I found for at the time "gynecological oncology". I will def look into a specialist for appendix cancer. I am still awaiting the final pathology report.. hopefully that is done early this week, since im

sure no one will accept me without that.

Please don't rely on GYN Oncology!

If this is appendiceal in origin (as mine was) then the treatments for Ovarian cancer will be useless.  Different drugs and different treatment modalities are used for different cancers.  Barnes does do intraperitoneal chemo for colorectal/abdominal cancers - get to an expert!

Redroses85

Ovarian mass/ unknown origin

I have a similar story, except they are not considering appendix. I am 36 and was just diagnosed in Sept after CT scan showed large mass in my abdomen and ovary and biopsy said Adenocarcinoma, which is more common with GI types. Colonoscopy and Endoscopy were clear of signs of cancer, but doctors aren't ready to rule out GI origin just yet. Had surgery a few weeks ago to remove the tumor, which turned out to be a tumor on each ovary. Had both ovaries removed as well as full hystorectomy and appendix, just to be safe I guess. Surgery was successful and there don't appear to be any further signs of cancer. Chemo is being recommended to prevent it coming back, however doctors (both my Gyn Oncologist and Hematology Oncologist) don't know if we should treat for Ovarian stage 1 or some form of GI stage 4. I've been given both treatment options to consider and really not sure which route I  should take.