Ovarian cancer-- 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

My appendix cancer was found the same way

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

LorettaMarshall

Amy~Sorry 2 meet U here but we identify w/your problems

Well good morning Amy

Interestingly, your case is very similar to mine.   My first diagnosis was Peritoneal carcinomatosis.  This is a Stage IV cancer.  When I had my Cytoreductive Surgery (CRS) at the University of Pittsburgh Medical Ctr. I met a young man 23 years old, who had the same surgery as did I.  His appendix had ruptured and from there cancers developed in the Peritoneal fluid in his abdomen.  He also had a chemotherapy treatment where a “hot chemo bath” was pumped into his abdomen for a period of time.  This was to help eliminate tumors that could well still be there, yet too small to be picked up on any kind of scan.  This is done at the end of the surgical procedure.  It is not always a given that this will be part of any CRS, but in his case it was.  In my case it wasn’t.  But it is a procedure that many well-equipped hospitals include in their procedures these days for these types of cancers.

As for me, I went to the ER thinking I had a hernia, and a couple of hours later, the diagnosis was cancer.  I've written on my "about me" page, and if you click on my picture, you will know a bit more about me.  From my local ER visit, I scheduled a 2nd opinion with UPMC, even though I live in Virginia Beach, VA.  My husband had his successful Stage III Esophageal Cancer surgery there, and I have great confidence in them.  This time a PET scan and exploratory surgery would reveal too many tumors and too large for surgery at that point.

I was instructed to have neo-adjuvant (before surgery) chemo treatments and then a re-evaluation would determine if I was a candidate for surgery.  This exploratory surgery would reveal cancer in both ovaries as well.  At the beginning of my chemo treatments my CA-125 was somewhere in the neighborhood of 400 or a bit less.  I forget at the moment.  Anyhow, one doesn't have to have a tumor-marker count in the thousands to know for certain that cancer is present.  I've seen some ladies post here with enormously high levels, and yet I am a Stage IV patient and my counts have never gone over 400.  So that number can be low like yours and still be great cause for concern.

So, though it's difficult for me to be brief, I had the pre-op chemo regimen of Carboplatin/Paclitaxel (Taxol) and then the CRS surgery on July 1, 2017.

My gall bladder, spleen, ovaries, fallopian tubes, omentum and sections of my intestines were removed.  Had I not had a previous appendectomy at age 12, the appendix would have been removed as well.  I had also had a partial hysterectomy at age 36 resulting in only the removal of my uterus.  Now doctors think that ovarian cancer actually begins in the fallopian tubes.  Had my docs known that 42 years ago, I would have had EVERYTHING moved!  And as we say in the South, “at age 32 you’re just a “Spring Chicken.”  You can take that as a compliment Amy.  At my age of 78, and having the “luxury” of both a rural as well as big-city background, I would place myself in the “old hen” category.   I wouldn’t even qualify as a setting hen, because I don’t lay “eggs” anymore!   But I'm still around and bossy to boot!

So it would seem that it just may be that your problems are very similar to mine.  My surgeon, Dr. David Bartlett, at UPMC, said they would remove "all non-essential organs" and believe me they did.  This was major surgery, but I am now entering my 5th year of survival.  Now it's not all been "peaches & cream"--after all it's a matter of going as long as one can in a "progression free survival" (PFS) when one has been diagnosed with a Stage IV diagnosis.  So now most often the words on my record are simply "Ovarian Cancer" because the Peritoneal Carcinomatosis and Ovarian Cancer are treated in the same way.  They’re not sure of the origin.  At this point it doesn’t matter.  Sometimes an appendix can rupture ultimately resulting in a diagnosis of Peritoneal Carcinomatosis.  That’s why it is important to remove as many “non-essential” organs as possible to prevent further spread to those places as well.

You are being seen by a gynecological oncologist and that is great.  They have additional training in treating the female organs.  Will put this information out there, but with lots more references than time will permit this morning.

So no doubt some adjuvant (post-op) chemo regimen will be prescribed for you.  So look for a longer letter on line later today.  I will look up some references that may be helpful for you.  But understand I am not a medical person, but have made it my business to know all I can about my own particular cancer.

Now Amy, that's not to say that the correct diagnosis isn't Stage IV Colon Cancer, it very well could be.  (I’m not going to comment on that possibility except to say that I have a friend who has been correctly diagnosed with Stage IV cancer that has similarities both like yours and mine.)  They involved her appendix, colon and ovaries.  Yet, her surgery was not as extensive as mine.  But Stage IV is Stage IV and you want to be certain that all that can be done is going to be done. 

There is a process known as HIPEC that I know is used for both Peritoneal Carcinomatosis and Ovarian Cancer patients.  It involves a “heated intraperitoneal chemo” procedure, but that is too long to go into here.  Will send some references later today.

Praying that you will know exactly where to go and what treatments you should receive to have the best response possible.

Love Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV