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.

Monday, February 4, 2008

Statistics

Appendix cancer and other peritoneal cancers are tough cancers to be diagnosed with. I've been in the appendix cancer community for a long time now and have communicated with many appendiceal cancer patients (over 300 to date). We see the statistics, and it seems our odds at survival can be very long. We read of 5-year survival statistics in the 30% range for some pathologies when treated with the best medical care available. I read of 10% 5-year survival odds in one study for my own pathology, signet ring adenocarcinoma. Another signet ring statistic I found was a bit more encouraging, it gave me a 15% chance at 5-year survival. We get excited when we read about 50% 5-year survival odds as they seem the best out there.

When we are looking for hope, we won't find a lot of it in the research statistics for appendix cancer.

When I initially read stats for signet ring appendix cancer survival I was terrified, there were no good numbers. When I finally found in a research study a 28% 5-year survival for appendiceal cancer patients using one of the more innovative treatments, I felt like I'd struck gold. The 28% survival seemed like such a great number then; prior to that I'd been told my odds of survival were zero. I was filled with hope at reading 28% had lived for 5 years.

But we have to learn to take statistics with a grain of salt. They don't mean much in a personal sense. If we have a cancer that has survival rates of 95% and we are in the 5% that doesn't survive, it's 100% fatal to us. Statistics are just numbers. We have to remember, that if only 28% survive, that means 28% DO live a long time, that's almost one in three. Why CAN'T we be the one in three to survive? It’s kind of an “is the glass half empty or half full” kind of a thing. It's all how we look at it.

I have a new friend in the cancer community who is a 13 year survivor and who still deals with the statistic that 20% with her cancer have recurrences after 10 years. But she recently wrote me:

"There are people who have survived in spite of the statistics. Statistics in cancer are useful in making intelligent treatment choices; they cannot predict what an individual's future is. If you accept the possibility of a recurrence then you have to accept the possibility that you could be just fine."

I also recently read this, written by a man who was diagnosed with mesothelioma. When he asked his physicians to refer him to reading material about the disease, he was told there was really no good reading material available. He decided to find out for himself what information was available and discovered the mean survival rate for his cancer was 8 months. No, the reading material wasn't good. But in the end he survived 20 years after his dismal diagnosis. He wrote an essay I am linking to here; it's very good reading when your mind is stuck on the statistics.

The Median Is Not the Message

For myself, once I selected a surgeon and had a treatment plan in place, I forbid myself from reading anymore studies or statistics about appendix cancer. I decided to give it all to my surgeon and to my God. It gave me a tremendous amount of peace to let go of the numbers.

And so far, I appear to be defying the 10-15% statistics. March 29th will be seven years from my diagnosis.

1 comment:

Anonymous said...

My husband was diagnosed with appendix cancer in March of 2013 and it seems like he has been to hell and back. He had 3 major surgeries in March of 2013 and almost died due to complications . He spent 45 days in sick @ university of Cincinnati.He already had 12 weeks of chemo then had a colon blockage due to the rumors in his stomach . He now has an ostomoy bag. He is back on chemo this will b his 3 rd week into 8 month treatment. He use to weigh 265 lbs and now weighs 152. Believe it or not he is doing very well at this point. He is very productive and does not stop until he cannot go anymore. What a fighter he is. What a journey we both have been on.