Stage IV Good News + Question

83popsong

Hello - Just wanted to pass on some Stage IV good news. I just received the results of a recent CT scan and I continue to be NED. That's 10 months since my colectomy and ablation to one tumor in each side of my liver. I continue to be amazed and hopeful with the success stories here and wanted to share mine.

My question regards follow up colonoscopy exams. How often do people that have had surgery and/or are NED have colonoscopy exams?

Thanks in advance!!!

--Eben

Betsydoglover

hi Eben -

First, congratulations on the great news!

I was diagnosed Stage IV in May 2005 - colonoscopy could not get all the way through due to sigmoid tumor. In November 2005 I had another colonoscopy to view the rest of the colon (at this point I was NED, with one more chemo cycle to go). Colonoscopy all clean. My GI doc said I could go 2 years before another. My onc said "no way!" - just one year. (Later she told me the GI doc probably figured I'd be dead, so why bother - humorous in a sick way, but actually I don't think she was right about what he thought - instead I think he is naive). So in November 2006 I went to the GI doc and requested another colonoscopy - clean again. This time he said I could wait 3 years unless the onc "screamed". I told my onc that and she is actually ok with 3 years at this point - she said something like "now we know the natural history of your disease and we know it doesn't involve frequent polyp formation, so waiting 3 years is ok".

I'm sure you will get a multitude of opinions!

Take care,
Betsy

robinvan

Hey Eben!
Great news on the clear scan. I had RFA to zap a liver met recurrence in March. Handy little procedure.
I'm not sure what the recommended follow-up schedule is for colonoscopy. I had one about a year after, that was two years ago. I'm curious about that too.
Have a great summer weekend!!
Rob
"A Cancer Journal" www.rob-pollock.blogspot.com

chynabear

robinvan said:

Hey Eben!
Great news on the clear scan. I had RFA to zap a liver met recurrence in March. Handy little procedure.
I'm not sure what the recommended follow-up schedule is for colonoscopy. I had one about a year after, that was two years ago. I'm curious about that too.
Have a great summer weekend!!
Rob
"A Cancer Journal" www.rob-pollock.blogspot.com

Hi Eben,

Great News!!!!!!

Because of my husbands job, we have not been in one place for 2 years in a row. That being the case, I have been to 3 different Gastro doc's. They were surprisingly all in agreement about my follow up care and my oncologist has been satisifed with their answers.

1st scope 10/04 diagnosed stage III

2nd scope was supposed to be 1 year out (10/05) I think I waited until 12/05.

3rd again one year out (10/06).

I have been given the green light for all three to now span them out for 3 years and then for 5 years.

So, my next scope should be around 10/09.

I told my oncologist that I wasn't sure I was comfortable going the full 3 years and he said we'd play it by ear and maybe do it at 2 if I wasn't comfortable.

Hope this helps.

I also think the follow up depends on your location. I'm in the USA.

Tricia

usakat

Hi Eben,

I was diagnosed June 2006, and am six months post-chemo for HNPCC - genetic colon cancer. My onc wants me to have a colonoscopy and an endoscopy (through the mouth to scope the stomach) now at my one year dx mark, and then every year for at least five years. After five I could consider every two years.

I think as long as my insurance will cover it, I will hold my nose, take the medicine and have the scopes every year.

Hope this helps and congratulations on being NED!!!

Katie

scouty

Great question Eben,

I think some of it depends on your individual circumstances.

My oncologist treats the surgical remission patients differently then his non-surgical remission patients. I am the later so he says he keeps a more vigilante eye on me, so I get scopes yearly even though I have had a few clear ones and it has been 2 years and 8 months since I stopped chemo and have had no recurrance. He told me that if I had been in surgical remission with being clear this long, he would recommend scopes every 2 years.

I know it also depends on if they find anything with your first one after surgery.

Hope this helps and CONGRATS on dancing with the hunk NED!!!!! Celebrate, you deserve it.

Lisa P.

tkd3g

Hi Eben,

Congrats on NED. I'm dancing with him as well.

I had stage 3 rectal- 3 years ago.I have a sigmoidoscopy every year and a colonoscopy every year. 6 months apart from one another. Mine being Rectal, he is checking the surgical site with the sig.

I think I remember him saying I could go to 2 years between colonoscopies. (sp?) I laughed at him. Every year is what I want. My tumor was very aggressive. Grew very quickly in one year.

Best to you.

Barb

StacyGleaso

Eben,

Congrats on your "NED-ness"!!!!!!! I've said this before and I'll say it again: EVERYONE benefits from happy stories REGARDLESS of where they are on this journey!!

I was stage 4, with liver mets. I get "scoped" every 3 yrs now. I will be 6 yrs NED in October. Initially, I got scoped annually, but that stopped after 2 yrs. CT scans are done for me every year, and a PET scan every 2 years.


Have a terrific weekend!

Stacy

P.S. I am an 80s pop song trivia FREAK! lol For kicks and giggles, try this 80s pop song quiz, it's great fun: http://www.yetanotherdot.com/asp/80s.html

kmygil

Hi Eben,

Congratulations on NED!!! I love to read happy news. I can't answer your questions, because I have no experience. Just wanted to celebrate with you.
Kirsten

sladich

Congratulations. I love hearing news like this. It's been 2.9 years since I've been diagnosed. Take care,
Debbie

hopefulone

Wonderful news Eben. Thanks for the encouragement. God Bless

impactzone

Congrats to you! I am also stage 4 and just finished 6 months of chemo after a liver resection. I had my CT scan Thursday and find out this week weither I am NED. The waiting is worse than I thought. All my best
Impactzone