My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Thursday, September 11, 2008

Things we don't know

I have been in the cancer community now for over seven years. I am in the community of cancer patients who battle a very tough cancer, appendiceal cancer.

When I was diagnosed with appendiceal cancer and finally located medical literature and statistics related to my cancer, I realized I was up against a monster of an enemy, a monster cancer. In the literature I read, only 10% survived a signet ring appendiceal cancer diagnosis...and even that wasn't necessarily cancer free or for more than five years. I never tried to look up cancer free survival in that 10%...I was afraid there was NO number. I was afraid the number would destroy any small bit of hope I might have clung to. My husband, also a nurse, knew I was up against tremendous odds.

My husband and I joked at first about a "Cancer Menu". If you knew you had to have cancer but could choose your cancer from a menu and pick which kind you would want to have, appendiceal cancer would be at the bottom of the list with pancreatic cancer. Late stage ovarian cancer would even be preferable. Basal cell carcinoma would be at the top of the list followed by prostate cancer and breast cancer. Breast cancer had at least a 90% survival rate compared to my 10%. I'd have traded for breast cancer in a minute.

Appendix cancer was near the very bottom of the cancer menu. No one should ever have appendix cancer. A useless appendage that threatens your life. How unfair is that? How unjust?

I've since communicated with hundreds diagnosed with appendiceal cancer. Even with the best of treatment is has a high recurrence rate. Many have lost the fight, and my heart breaks every time that happens, every time I learn another has lost the battle. I hate appendix cancer.

But here's the thing. The interesting and hopeful thing. The thing that defies explanation.

There are people I've met in my journey, just a few, who make me realize that we don't know everything. That there is never NO hope.

A woman I took care of in my hospital had a cancerous colon tumor when she was 40 years old and was raising her kids. Her husband had been disabled by an accident and could not help her support her family or raise her children. Her cancer had spread into her abdomen. A single mom with stage IV cancer. Her surgeon removed the tumor. Then she kept having recurrences in her abdomen. No peritoneal chemo, no IV chemo, just years of tumor recurrences and removals. Her surgeon said he'd wished he could have installed a zipper in her abdomen as he'd had to open it so many times to remove her cancerous tumors. But then, one day the tumors just stopped recurring. She is an elderly woman now who's then gone for decades cancer free after multiple recurrences at Stage IV.

Another woman who's contacted me has been alive for 20 years with appendix cancer. She had HIPEC initially, but has had periodic recurrences since HIPEC. She has had abdominal tumors removed several times but has gone on to live her life. Her appendix cancer has never been cured, but to her is just a chronic illness. She lives a full life in spite of decades with chronic appendix cancer.

Another young woman I communicate with was diagnosed with Stage IV appendix cancer a decade ago and told she might only have three months to live. She had surgery and IV chemo with only 5FU and leukovoran but married and had a child after diagnosis. Then the cancer recurred in her lung and she had an entire lung removed. But almost a decade later she is alive and cancer free. Against all odds, defying explanation.

Those cases are unusual and in the very small minority, but they are there. My very favorite author, Lewis Thomas, was a physician and biologist and at one time was the president of Memorial Sloan Kettering, the cancer institution where I was treated. He was like myself, a medical professional who believed and accepted as truth the science and the published medical statistics.

But Lewis Thomas said once in awhile they would send home an advanced Stage IV patient riddled with cancer that they had no more treatment for. They would send him or her home to die......and a few would come back to visit them years later cancer-free and healthy, defying the medical literature. The mystery they couldn't explain. It didn't happen often, but it happened.

We don't know everything, but there is never NO hope. The odds of being diagnosed with appendix cancer are about one in a million. We've aleady defied the odds in being diagnosed with this cancer. But who's to say no matter how sick we are, that we can't, like I have, defy the odds?


Jenny said...

Hi Carolyn,

I emailed you today asking about the Appendix Cancer ribbons.

One thing that has me on the ropes about this cancer my mom has, is that I don't know how to help her emotionally. She has 7 children that have been there for her, at the hospital, at home, helping as much as we can. However, I can't help feeling I am missing something. I have told her about articles and websites to go to, she doesn't want any part of it. I try to talk to her about it, she brushes aside the attempt. She doesn't want to talk about it.
She had her debulking surgery 3 weeks ago, with the HIPEC, the doctors says the tumor was low grade, to the point they could just peel it off in alot of places. The doctors gave a her a good prognosis, they said she should get many years out of this surgery.
Yet, she is in the hospital again. She developed a fistula in her abdomen. I have a terrible cold and I do not want to visit her until I am better. So I call, but she doesn't want to talk, in a way I feel she is almost withdrawing.
So I guess what I am asking, after this lonnnngg ramble, is...
When you were diagnosed and had your surgery, was it hard for you to talk about it? What can I do to emotionaly support my mom, without suffocating her?

Carolyn Langlie-Lesnik RN BSN said...

Hi Jenny,

I sent you an email back about the ribbons, just send me your address!

I know exactly where your mom is at. Most of us diagnosed and treated for this cancer have a lot of emotional issues following surgery. We live in a very uncertain world with an uncertain future, our "normal" life is gone.

Much of how I felt I didn't want to share with those who loved and supported me as they wanted me to feel good and hopeful and positive. When I didn't feel that way, I didn't really feel I could share my thoughts (except sometimes with my best friend).

For me it really helped to journal. Anything I said on paper (or password protected computer file) only for my own eyes was okay to say, so I could really write how I felt and be honest.
I think I wrote hundreds of pages.

I don't know if your mom likes to write, but offering her a journal and pen or password protected file might be a good thing? Many patients also seek out counselors, someone outside of their family, to talk to.

Your mother is very lucky to have such a caring family. i truly wish her the best.

Hope that helps!

Erica Walker said...

I was diagnosed with appendix cancer in Dec 2011. After 6 months of chemo and HIPEC I was cancer free. After my recent Dr visit there was a change in my CT and is suspicious for possible recurrence. Ive been unable to find alot of literature on appendix cancer and if there are any sites you know of plz share. Thanks.