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update on my surgery

kale1972
Posts: 36
Joined: Jun 2012

So I woke up and was told they only took 1 ovary wit the cyst and the omentum, but left everything else because I have multiple tumors and a muconeous cancer covering much of my abdomen. There is a large tumor on my liver. They had the liver surgeon come in and look at it and he said it would be a huge ordeal to remove it so they choose that a better quality of life was the best decision. The plan to do chemo to try to shrink some of the tumors and go from there. They want me to recover from the surgery and pending the pathology report, then they will make a game plan. I will possibly have to change doctors because they are thinking the origin of the cancer is probably not gynological, but not totally certain at this point. They put in a cath port (?) on my chest/shoulder area and that totally upset me for some reason. I guess I am just sick of being poked and prodded! They think I can go home tomorrow, but only if I am able to pass gas on my own. My drain keeps filling quickly with the ascites fluid. So, if anyone knows what any of all this means, I'd love to hear your thoughts. I always feel like they are keeping info from me!

Ruffy7
Posts: 126
Joined: Sep 2011

Hi, glad your surgery went well. I was dx with appendix cancer a year ago and since have done quite a bit of reading/research on it. Mucinous tumors of the appendix tend to rupture (mine was caught early so didn't) and spread everywhere in the abdominal cavity. Many times what was initially thought of as ovarian cancer is actually a mets from the appendix. Abrub is often posting here and she hopefully will weigh in on this as well. Anyway, just a thought... made me wonder if it isn't appendiceal in origin based on what you said they found during surgery. Hang in there and my thoughts and prayers are with you. Let us know what they find out. Ruffy

Ruffy7
Posts: 126
Joined: Sep 2011

Oh, if it is from the appendix, I would definitely have a doctor who specializes in it take a look at you. Since appendix cancers are so rare you may have to travel to find these specialists. Not sure where you're located but there are experts on the east coast, of course, Md anderson in Texas, and several other good ones scattered around the country.

kale1972
Posts: 36
Joined: Jun 2012

Thanks for the responses. I am in So CA. My obgyn onco is one of the best in the country. I hope they have a good specialist here for whatever I will need next. I am at UC Irvine Medical Center.

kikz's picture
kikz
Posts: 1284
Joined: Jun 2010

have gone through a lot. I am glad you are messaging so we can keep up with what is going on and you may find some ladies who can offer advice. I just want to let you know you are in my thoughts and prayers as you continue with your journey. I hope you quickly find the medical care you need for your diagnosis.

Karen

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lovesanimals
Posts: 1282
Joined: Sep 2011

I'm praying that your doctors' game plan will allow you to kick cancer's butt!

Kelly

AnneBehymer's picture
AnneBehymer
Posts: 739
Joined: Jul 2011

You will love the port it was hard for me to handle at first I did not like the ideal that there was this thing in my chest but now I love it. they take blood from there and my chemo is done threw it so I don't go through all the pain I was before ask for numbing cream to put on an hour before any treatment it will keep you from feeling much pain. I am sorry for everything you are going through you are in my prayers.

Love, Hugs, and Prayers
Anne

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

I had my initial debulking at UC Irvine. I do think the doctors there are very good. I have read that mucinous responds better to chemo that is typically used for colon cancer. I imagine they are doing an assay on the tumor that was removed to determine the best course of action. If the doctors recommend Carboplatin and Taxol, however, I would ask if it was tested for sensitivity to colon cancer drugs, and I would do some research on the response to colon cancer drugs in this type of cancer. Hope you feel better soon.

kale1972
Posts: 36
Joined: Jun 2012

Who was your surgeon at UCI? Did you ever have heated chemo?

Tethys41's picture
Tethys41
Posts: 1057
Joined: Sep 2010

My Dr. was Dr. Berman. They weren't doing heated chemo when I went through this, but I understand that there is a doctor there who does it. Bigelow maybe? Anyway, they use heated chemo extensively in Europe for treating cancer. It sounds like an effective treatment.

cjbaileydc
Posts: 1
Joined: Jul 2012

It sounds like from what you are saying that it is possible you have pseudomyxoma peritonei or mucinous adenoma/adenocarcinoma. It originates in the appendix more often than not but can also originate in the ovaries.

Before you let any other doctors initiate further treatment you should consider consulting with an expert in this type of cancer. There is a prominent specialist located in So. CA--Dr. Andrew Lowy at UC San Diego.

You need to find out if you are a candidate for CRS/HIPEC (Heated Intraperitoneal Chemotherapy) as this is the gold standard of treatment for mucinous adenoma/adenocarcinoma/PMP. If you are a candidate for this procedure you don't want to proceed with any further surgery or chemo at this time as it can complicate the HIPEC surgery.

Here are some links with lots of information about appendix cancer/PMP/HIPEC:

http://www.pmpcure.org/

http://www.pmpawareness.org/

http://pmppals.org/

abrub's picture
abrub
Posts: 1540
Joined: Mar 2010

picked up when you friended me.

As a 5 year appendix cancer survivor, and very involved with Appendix Cancer and PMP support groups, I know that you must go to an Appendix Cancer Specialist. Dr. Lowy is one. Other experts like to treat this as a branch of Colon Cancer, but it is sufficiently different that you need someone who knows this particular cancer well. Therefore, I would strongly encourage you to go to Dr. Lowy (you mentioned elsewhere that Dr. Lowy and another expert are equidistant from you. Go with the Appendix Cancer expert.)

Feel free to contact me with questions, issues, etc. There is a very good PMP group on FB, where you'll find lots of excellent information as well.

My cancer, while not PMP, was mucinous adenocarcinoma, and I had mets throughout my abdomen, on my ovary, omentum, and clinging to the outside of my colon. I had intraperitoneal chemo, tho not HIPEC. MSKCC in NYC doesn't (or didn't) feel that HIPEC had an advantage over multiple courses of post-op IP chemo. I had 5 cycles (of a planned 8). Read my story - you'll learn a bit of what my treatment was. In any event, I'm doing great now.

Alice

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