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Appendiceal Cancer

ann9190
Posts: 3
Joined: Mar 2012

Hi, I'm new to this site and to discussion boards in general. But I am still recuperating for 10-hr surgery in Sept 2011 to remove tumors from my abdominal wall, to remove my spleen, gall bladder, sm intestine, and R colon, and a chemo bath in the same surgery. When the doctors said it would take 4-6 mos to recover, they did not exaggerate.

I have appendiceal cancer, signet cell, Stage IV, as it had metastisized to my ovaries, rectum, etc. No tumors have been found in my liver, lymph nodes, or other major organs nor in my bones.

Anyone have anything similar? This has all happened so fast, and I am just now coming to terms with how it is changing my life. I'm at the point where I am focusing on nutrition and diet, but not finding a lot of information online.

Would appreciate any help you can give. Ann

Anxious Kathy
Posts: 21
Joined: Dec 2009

My husband is having the same surgery in 2 weeks! We know the surgery lasts forever but it does our hearts good to hear you came through it! We don't know quite what to expect either and yes, it comes at ya really fast. He was diagnosed when they found it during a hernia surgery...5 rounds of chemo did nothing, so surgery it is. Since you have just gone through this, do I need to find him a walker? A shower seat? any advice would be greatly appreciated...we don't know how to prepare for him coming home. He is in great spirits, better than mine. I'm the worrier of the group! They are telling him that he will not have chemo after the surgery, that THAT is the chemo treatment. Have you been told the same? he is having gall bladder, spleen, appendix, portion of stomach, omentum, some intestine, etc etc removed..things we didn't even know were in there! But of course, they will know more when they get in. We are going to Wake Forest Baptist in North Carolina.
I truly hope things slow down for you a bit and let you catch your breath! Yes, they keep preaching nutrition to us...protein is so important! Rebuilds and repairs muscle...that is all we've actually been told at this point...Hang in there, Ann!

Kathy

Anxious Kathy
Posts: 21
Joined: Dec 2009

there are many wonderful women there to help and share ideas...they've put up with me for a few months now asking all kinds of questions! They really are so informative, it helps to understand more about what we're all going through to deal with it all!

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi: Yes, there are at least two women on the peritoneal discussion board that have appendix cancer.
Cheryl

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

with lots of information on the surgery with HIPEC. I am an appendix cancer survivor (mucinous adenocarcinoma), and while I didn't have the heated chemo, I had 5 cycles of intraperitoneal chemo after my surgery - removal of omentum, ovaries, uterus, 2 parts of my colon, some of my ileum. Recovery is hard, but I'm now doing everything. Life is actually back to normal. I'm almost 5 years out from diagnosis, 4 years out from treatment, which included Folfox + Avastin systemic chemo. Most important is to ensure that you are treated by someone who is a specialist in Appendix Cancer.

A friend of mine is a 10+ year survivor of Signet Cell Appendix cancer.

As for needing a walker, they (the hospital) sent me home with one, but from what I've heard, most people don't need it. They are walking fine, albeit tenderly, soon after surgery. I had significant post-op complications that left me in the hospital for 4 weeks, unable to eat for most of that, so I was very weak. I didn't really need the walker (and hated it with a passion.) However, I was so weak that they wanted me to have one.

As for the FB group, it is the PMP Appendix Cancer Support Group. Many of us did not have PMP (I didn't). Amongst us all, there is a lot of excellent information.

Yes, we're out there, and many of us are doing well. You'll see my story if you click on my name.

Alice

Anxious Kathy
Posts: 21
Joined: Dec 2009

Wow..survivors everywhere!!! I cherish your story! It gives us both such hope! We know that this is the step we need to take to get to our tomorrows and we're ready to go! Haven't packed yet, but Monday is a few days off...ok...I'll stop procrastinating and pack! :) We will get there! The surgeon says once he gets all of the fluid out, he'll have such a better view and we'll know more the extent of the cancer to go after. But we're confident that we're going to get him through this. there are way too many good stories out there...they are getting this stuff! Thank the Lord!

We do have the walker just in case...I've had back surgery and am not much help other than just holding him steady, but other than that, we're just waiting for Monday. Some family is coming in for support and we're so glad! It has been amazing the outpouring of love and support. I've never truly understood cancer and he had a tumor in his mouth 2 years ago, which removal went well and nothing else....so we've never had to face it head on like this, but the cancer warriors are just amazing! You are a fine example!!!

Thank you!!! Kathy

hockey25
Posts: 1
Joined: Jun 2014

My son-in-law just 42 has been diagosed with Appendix cancer State 4. Trying to get more information.  He had HIPEC surgery.  6 month ago but some cancer came back.  Now they are going to put him on checmo.  Just hoping for some postive information.   Pat

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