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colon cancer survivor

lawleete
Posts: 25
Joined: Feb 2004

i need to ask a question that i hope some of you can answer.i was diagnosed with stage 3 colon cancer that had spread to 10 of 15 lymph nodes.i had surgery and 6 months of chemo.that was 3 yrs. ago and so far,everything is fine.my question is this.my oncologist sees me every 6 months and my blood is tested every 3 months for my cea count.is there anything else i should be doing as a preventative measure? i realize that it's been 3 yrs. and so far so good,but my oncologist (who i trust completely)says no.any thoughts? may god bless all cancer patients and their caregivers!

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Dear Lawleete,

I am kind of in the same boat. I too was diagnosed with Stage 3 colon cancer, had 2 positive lymph nodes out of 10 and 6 months of chemo. When I was finished with the chemo, I had a CT scan, a colonoscopy, both of which came out clear. I now go every other month for blood work, but nothing else. I keep asking my doctor what I should do and he keeps saying, "get on with your life". My diagnosis was 16 months ago. My CEA is very low, but I know that doesn't always mean there is no more cancer. Yes, I don't know what else to do. I am trying to take my own preventative measures by eating healthy, avoiding as much red meat as possible, avoiding sugar (thanks to emily preaching to us) and just trying to live healthy.

I know it is scary and I too feel like I am just sitting here waiting for the other shoe to drop, but I don't want to miss out on life because I am afraid to live it. Yes, God bless cancer patients. It's tough with it and it's tough worrying about it. Hang in there.

Kerry

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

I also have stage 3 cancer, rectal. Besides regular bloodwork, you should be having regular cat scans, at least every 6 mos. You should have a cat scan of chest, abd, and pelvis. You should have a yearly colonsocopy. The blood work is necessary, but only 85% of colon tumors have CEA, so the colonoscopy and cat scans are necessary to make sure the cancer hasn't spread. Good luck.

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi Lawleete,

Kerry and moesimo are right. Exercise and staying on top of any new feelings or things that might not "feel quite right" are important. But by all means, do NOT let this consume you. Don't get SO caught up in the battle that you overlook life around you.

Your progress is inspirational and you should use that to help others in your same situation. It will make you feel like you're doing something positive with this experience, and be a great benefit to others.

Stay healthy,

Stacy

littlejulie's picture
littlejulie
Posts: 311
Joined: Mar 2004

hi there, i dont have any answers to your questions but i just want to wish you all the best and may god bless you. my mother was recently diagnosed with stage 3 rectal cancer - i can't wait until she's considered a colon cancer survivior just like you. 3 years ago - thats GREAT!!! wishing you MANY MANY more years of a healthy life!!!

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Great stuff Lawleete--encouraging for all of us to hear yu have gone so far--my guess is the onc. will do all that is needed to ensure yu keep your health.
Our best wishes for the future--kanga n Jen

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi law,

You asked about preventative measures. Well there are many you can be doing but for everyone they differ.

When I was dx'ed with Stage 3 colon (sigmoid) cancer I had to ask myself what did I do...lifestyle, diet, stress relief, (or no relief), to "help" my body allow this cancer to grow in the first place. Did I stuff my emotions? Was my diet out of whack? (something like 80% of colon cancers are diet related so does that mean we just go back to our precancer eating habits? ), was I getting enough exercise? I did some soul searching and came up with my own "protocol" for preventing a recurrence of colon cancer. You may or may not know that I opted out of the prescribed adjuvant chemo. (you can read about it on my webpage here if you'd like more detail as to the why). But that did not mean I did nothing. I overhauled my life in a few key areas because my health became my priority overnight. It has been a journey and I have added items along the way after doing oodles of research as to what other long term survivors did to achieve it. The main common denominators: diet full of veggies, detoxing, yoga.

As for the medical establishments views managing the disease, my own oncologist sees me every six months for either a colonsocopy or CT/PET scan, yearly chest x-rays and blood work (even thought my tumor gave off no CEA). At my 3 year mark I will start seeing him once a year until 5 yrs and then we go from there. He has comitted to watching me closely since I did not do any chemo.

I am very surprised that you are not doing any follow-up testing.

Great that you are doing fine after 3 yrs. It is always good to hear from fols who have been at this longer than I, but I would sure like to hear from more folks who are say....10, 20 yrs out! I have made a vow that I will continue to check in here as long as I am alive so I can encourage the newbies the longer I live.

peace, emily

livin
Posts: 319
Joined: Jan 2003

Hi Lawleete, I agree with what was said, I am also a 3 year survior. I get cea's monthly Colonscopy every 6 months( I had a stricture in my intestine last year caused by radiation I had 2 years ago) So this is why I get my Colonoscopy so often. Dialation is done at this time also. My doctor also do a bone scan yearly also. I also recieve cat scans of the abdomen yearly. Just so happen I had Breast Cancer 1999 before my colon cancer. I think diet and exercise plays a role to.

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