Question for Stage 3 survivors

LindaK11 · April 2005

Hello, my name is Linda. I was diag.Stage 3 colon cancer with 1 pos lymph node. Had colon resection and 6 mos. folfox chemo. Also had a colonoscopy that was clear. So - what is next? I have read that many times recurrence is in the lungs or liver or does it show elsewhere? What type of ongoing tests should I be requesting? Or is it basically blood work every 3 months and just wait for another questionable symptom to occur? I have read some of your posts and it seems like everyone has had different experiences. I thought I was doing pretty good but am beginning to have some doubts.

Any feedback/advise will be most appreciated.

kerry · April 2005

Hi Linda,

I was diagnosed Stage 3 colon cancer with 2 lymph nodes testing positive. I also had resection of colon, 6 months of chemo and then had a recurrance about 3 months before my 2 yrs. anniversary. I caught my recurrance early.

My advise is to have regular exams, blood work, CT scans and also and most important be vigilant with your own exams such as know you body and how it feels. I found my own recurrance by checking my centenal (I know this is not spelled correctly)node in my neck.. I went through 4 months of Oxaliplatin and Xeloda and now I am only on a maintenance program. My recurrance was only in my lymph nodes and did not involve any other organs.

Please, personally email me and let me know if I can help you in any other way, since I am continuing treatment for my recurrance.

Kerry

CAMaura · April 2005

Hi there Linda,
I am stage three as well - three pos.nodes; I'm inthe midst of my 6 month regimen, and my assumption is to follow a rather strict regimen of follow-up.
I would stay in touch with yuor docs and current research - and stay on this site! - but I wouldn't drive yourself nuts with worry. It seems as if your docs have worked hard for you...and I hope your body remains very strong. Live a healthy life and have faith...so far you are doing wonderfully!

Best wishes and keep in touch.

Cheers,
Maura

Moesimo · April 2005

I am also a stage 3 survivor, with 2 positive nodes. After your treatments are done the waiting begins. I was diagnosed 2 years ago and I have had bloodwork every 3 months, a cat scan every 3 - 4 months, yearly pet/cat scans. I had rectal cancer, so everytime I saw the surgeon I had a rectal exam. I have yearly colonoscopies and will continue to do so until it has been 5 years. I am glad that my docs do careful watching of me. I was told if I have a recurrence it hopefully would be found early, because it would increase my survival rate.

I hope this helps.

Maureen

StacyGleaso · April 2005

Hi Linda,
I was stage 4, mine spread to my liver. Today, however, I am cancer free. I was diagnosed in Oct 2001, had chemo & radiation prior to surgery. 10 hr. surgery revealed it spread to my liver. I had a liver resection, 6 months more of chemo, and all fine now. Last chemo was July 2002. I have a CT scan every year, and now get colonoscopies every 2 years. I still have my port from chemo, and will get it removed once I hit 5 years clear. You will drive yourself nuts for a while, everytime you have "abnormal" feelings about an ache or pain. With time, it'll get easier...I promise!

You will "meet" a lot of survivors here, many caregivers as well. If you have specific questions, you can e-mail others right through this web site.

Best of health,
Stacy

rejoyous · April 2005

I'm stage three on a similar schedule to yours--just done with chemo, happily received my first clear c-t scan, but am just embarking on surveillance. I'm supposed to have c-t scans every four months, a colonoscopy at regular intervals, bloodwork, and surveillance.

I just wanted to add that as far as keeping my spirits up, I've gotten a lot of strengthening from this site. People have such wonderful fighting spirits, I just feel that whatever happens, I'll deal with it when it comes, and you all will help me. Meanwhile, everyone's story is so different, somehow seeing all the variation has helped me to let go of thinking I can know what the future holds. I'm just enjoying life, right now, as fiercely and serenely as I can.

Live strong!

kerry · April 2005

rejoyous said:
I'm stage three on a similar schedule to yours--just done with chemo, happily received my first clear c-t scan, but am just embarking on surveillance. I'm supposed to have c-t scans every four months, a colonoscopy at regular intervals, bloodwork, and surveillance.

I just wanted to add that as far as keeping my spirits up, I've gotten a lot of strengthening from this site. People have such wonderful fighting spirits, I just feel that whatever happens, I'll deal with it when it comes, and you all will help me. Meanwhile, everyone's story is so different, somehow seeing all the variation has helped me to let go of thinking I can know what the future holds. I'm just enjoying life, right now, as fiercely and serenely as I can.

Live strong!

Beautifully stated!!

Kerry

ron50 · April 2005

Hi Linda,
I had an aggressive stage 3 tumor ,into 6 lymph glands. It is difficult to deal with the period just after treatment when you go from the active anti cancer regime to the waiting game, I was not given much chance because of the number of nodes involved both onc and surgeon thought that mets were inevitible. I asked them for advice on what to look out for and after a fair bit of pressure my onc suggested that if I had any symptoms of any kind that never went away but seemed to get progressively worse cntact him straight away . He was mainly talking about things like pains ,tiredness and troubles with bowel habits. On average I have had a scope every year (two more small polyps removed)and a scan every two years ,though I had pancreatitis and had my gallbladder removed and had scans for both of those. Your health and wellbeing are more or less back in your own hands be vigilant but not paranoid ,you really have to try not to worry about anything until you know for sure that their is a reason to worry...I'm now into my eighth year with no signs of reccurrence,good luck Ron.

taraHK · April 2005

Hi Linda. Sorry to be replying so late. I was diagnosed with Stage 3 rectal cancer (1 pos lymph node). My doctors told me exactly what my follow-up regime would be. I sometimes "push" for a little more! I'm almost 2 years post-surgery.My follow-up includes clinical exam and history, blood test, CT scan, ultrasound of liver, colonoscopy. The schedule changes with time. As others have said, it's hard to acheive a good balance between aggressive follow-up and reducing anxiety. Best wishes,
Tara

Shandle · April 2005

StacyGleaso said:
Hi Linda,
I was stage 4, mine spread to my liver. Today, however, I am cancer free. I was diagnosed in Oct 2001, had chemo & radiation prior to surgery. 10 hr. surgery revealed it spread to my liver. I had a liver resection, 6 months more of chemo, and all fine now. Last chemo was July 2002. I have a CT scan every year, and now get colonoscopies every 2 years. I still have my port from chemo, and will get it removed once I hit 5 years clear. You will drive yourself nuts for a while, everytime you have "abnormal" feelings about an ache or pain. With time, it'll get easier...I promise!

You will "meet" a lot of survivors here, many caregivers as well. If you have specific questions, you can e-mail others right through this web site.

Best of health,
Stacy

Hi Stacy! Your response to Linda was really encouraging to me. My cancer spread to my liver too. I was never told what stage it was in but it had to be stage 4. It has shrunk since I've been on chemo. I'm currently still fighting the battle, but it's nice to know I can win. Once you hit 5 years, is it unlikely at that point it will return? Wanda

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