Cancer of the Appendix

sweetkiss · Posted: Mon Jan 17, 2005 10:16 pm Post subject: Cancer of the Appendix

Does anyone know or has known someone that has or had cancer of the appendix, and how are they doing and what treatments are they or have they receieved?

hhmv73a · Experienced user Joined: 16 Jan 2005 Posts: 95

very uncommon, but usually the treatment is surgery for complete resection followed by radiation (if there is residual disease and repeat of surgery cannot be done) or chemotherapy if indicated.
the treatment depends on the extent of the disease, the gen health of the patient and other important medical factors. you should discuss with a surgical oncologist for the treatment.
good luck,

Jay

J. Jay Lu, M.D.
Diplomate, American Board of Radiology (Radiation Oncoogy)

christyrn · New User Joined: 30 Jan 2005 Posts: 1

I had cancer of the appendix 2 1/2 yrs ago. It was found during a routine appendectomy. I had a colon resection and have been cancer free since!

growla1974@yahoo.com · New User Joined: 15 Mar 2005 Posts: 3

I was just dx in Nov with gastrointestinal carcinoid tumor. I had my appendix removed the Sunday before Thanksgiving. I am going through a tough time, as we are American but living in Germany due to hubby being in Air Force. So , all of this has been done so far with a German doctor with limited English speaking skills. When I asked my american dr if he had the translated results, he told me you have gastrointestinal carcinoid tumor of the appendix, you can look it up on the internet. At this time, I went to one website that didnt mention anything about it being cancer, just that if its removed everything should be fine just go for 3 month check up. My frustration is growing. But I finally have an appoinment next monday with an american oncologist. So hopefully we will finally get somewhere. My nurse read part of the translation to me and I have some questions for the oncologist, she told me that it said that it was MOSTLY removed from the wall!!! WHAT??? So does that mean I still have cancer/cells?? Looking for others who have gone through this or is going through this. Are you having a hard time getting anyone to listen?? I know its more of a rare cancer, but its still cancer and we need answers!!
Gina
_________________
Recently dx w/ gastrointestinal carcinoid tumor of the appendix.

hhmv73a · Experienced user Joined: 16 Jan 2005 Posts: 95

Dear Growla,

Sorry to hear that you have trouble consulting an English speaking physician.

Carcinoid tumor of GI is not rare, although uncommon. Because carcinoid is very slow growing, some physician may tell you it is benign. However, since they may metastasize, carcinoid is considered malignant.

Surgery is the main treatment for carcinoid tumors. Complete resection offers a good chance of cure. One way to ensure complete resection (although not to guarantee it) is to check the pathology report and make sure that the resection margins are negative. So you may need to talk to the surgeon again to discuss about the pathology results.

Good luck,

Dr. J. Jay Lu

Tessa · New User Joined: 09 Jul 2005 Posts: 2

My sister has just recently been diagnosed with this cancer. I'm finding it hard to get information about it from my family, as I live in a different country. She has had the appendix removed, with some of her small and large colon too.
She has large growths on both overies, and other nodes in the peritonel cavity. She is to have a full histerictomy next week. Her prognosis is grim, and I understand there is no hope of a cure.

I've done some reading from other websites, and I want to get an understanding of "average" or "likely" survival rates. But I don't understand the medical terminologies enough.
Can some one tell me, should I be thinking weeks, months or years??

Ezzy · Regular Joined: 30 May 2005 Posts: 11

Hi Tessa,

Do you know the actual diagnosis for your sister's type of cancer? My mom also has a cancer of the appendix and she was specifically diagnosed with mucinous adenocarcinoma of the appendix. If this is what your sister has, there is information here (two pages):

http://cancerforums.net/viewtopic.php?t=1288

and here (four pages):

http://www.dipex.org/community/topic.asp?TOPIC_ID=93

I highly recommend that you talk to a specialist who treats this kind of cancer. There is a Dr. Paul H. Sugarbaker in Washington D.C. who you can contact to get a referral to a doctor near you. His link is:

http://www.surgicaloncology.com/

My mother is being treated by a Dr. Robert Barone in San Diego, California, whom you could also contact to get more information if you want to. His link is:

http://www.oncologysandiego.com/physicians.html

And, finally, here's a link where Dr. Sugarbaker explains about how important it is to find a surgeon who knows how to operate on this type of cancer correctly:

http://www.cesil.com/1198/ensuga11.htm

I hope that helps!
Ezzy

sbudd · New User Joined: 05 Jul 2005 Posts: 4

Tessa --
Don't give up hope! You mention something about your sister living in a different country. Check out a site called PMP Pals -- they have a database of doctors around the world who are experienced in treating PMP (which sounds like the disease your sister has). Most oncologists do NOT know how to treat this, and sometimes do more harm than good. If you'd like more information, google the term "pseudomyxoma peritonei" and start compiling information. I also recommend a Yahoo group called PMP bellybuttons:

http://health.groups.yahoo.com/group/pmpbellybuttons/

You'll find all kinds of information there -- you have to search through all the messages, but still there is lots there that is helpful.

Don't give up!

Sandy

Tessa · New User Joined: 09 Jul 2005 Posts: 2

Thank you for your replies.

I believe that they intend treating my sister soon with the same or similar chemo to that for bowl cancer. She has just today had a her hysterectomty, so I have a few weeks at least to do some research and share it with the family.

Thank you again.

sbudd · New User Joined: 05 Jul 2005 Posts: 4

Tessa,
I don't mean to be alarmist, but please have your sister contact one of the specialists BEFORE she starts chemo. If she has PMP, standard chemo will not help at all. Please have her check in with the specialists before she does anything else. If you need a name, let me know.

Sandy

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