Stage 2a colon cancer - Deciding on chemo with oncologist

My husband had surgery last month to remove 12 inches of his colon and I am grateful that he is recovering well.  The surgeon told us that his tumor was T3, N0, M0 which is stage 2a.  We are seeing an oncologist tomorrow and getting a second opinion at MD Anderson.  i noticed there's a lot of disagreement among doctors on whether or not to do chemo for this stage.  We're going you ask the doctors, but we are concerned about recurrence if we don't do chemo.  His CEA test was low and the tumor was low grade but moderately differentiated.  Any advice on how you treated stage 2a, chemo or no chemo, would be much appreciated.  Thank you!

Comments

  • aggie0053
    aggie0053 Member Posts: 110
    chemo

    I had the same in 2010 at that time they said no chemo. 2014 i had cancer of one lymph node in my abdomen. My new onc said i should have had chemo back then. i had 12 treatments of folfox with avastin next week i go for my 10 mth scan, so far i've had 2 and there all ned, myself i was lucky it was slow growing, also i was checked with blood every six months everything came back good, just lucky i caught it when i had pain in abdomen, each ones different so you have to make your own decision

  • LindaK.
    LindaK. Member Posts: 506 Member
    Thought I'd chime in

    My husband was originally staged at 2 in December 2012.  I wish we had gone for a 2nd opinion before we finally did 13 months later.  He did follow the oncologist's advice and did the 12 rounds of Folfox, finishing in July 2013.  I had been asking about a PET scan from the beginning and was told each time "He doesn't need it"

    By November of 2013 he was having major bowel issues again only be be blown off by his GI doc, internist, surgeon and oncologist.  He was actually told "Lose weight, you're constipated, eat a better diet, try Linzees, try double Linzees, try triple Linzees"  in early January 2014 he was back in the hospital with totally inept care for 6 days before anyone even ordered a ct scan.  They would do an xray every day to monitor his "constipation". I can barely able to type this without going into a complete rage about his care.  They finally went in when his surgeon saw the large tumor in his small intestines.  My reaction to all of them was "When a patient not even 1 year out with cancer complains about bowel issues, why didn't any of you send him for a scan?"  Complete and utter fools, all of them.

    After his recurrence and stage 4 diagnosis we got the heck out of Dodge to a larger, better and more personal care hospital and oncologists.  First thing they did was order a PET scan which showed some lymph node involvement which they told us was not curable or  treatable by surgery, only containable by Folfiri so he started that new regimen in March 2014.  That went pretty well for a few months, he tolerated Folfiri better than Folfox.  He had another obstruction which landed him in the hospital in May and got c-diff while there which delayed treatment another few weeks.  They added Vectibux which gave him a terrible acne like rash, but he kept at treatment.  In late August he had an obstruction in his bile duct from the lymph node tumors pressing on the outside.  Back in the hospital, endoscopy and stent placed.  Back to the hospital a few weeks later with tumors pressing on duodenum, another stent placed and then the news that chemo is not working.  He passed away 11/2/14.

    Looking back, I wish he'd had a PET scan to start (in December 2012) which may or may not have shown the other issues.  I also wish we had got a 2nd opinion from the larger hospital right away.  sounds like you are getting that 2nd opinion which is good.  My belief is that he had more cancer in his body from the first diagnosis and the 6 months of Folfox just held it at bay.  I also wish his first oncologist was more professional and caring - he told us from the hallway (after we had waited 1 hour in a room and he had a phone to his ear) there was lymph node involvement.  It took him 10 days to come see my husband the 2nd time he was in the hospital for surgery and his office is connected to the darn hellhole my husband was in.  Then he threw us the stage IV bombshell after the surgeon told us he removed necrotic tissue, never mentioning more cancer.  Only when we both started crying did he act surprised we didn't already know that - DUH!

    Knowing what I know now, I don't think my husband would have started chemo, he may have had less time, but it would have been better spent with us.  Of course, none of us have that crystal ball, so each person's decision is their own to make with the information given tot hem.  My husband did everything they suggested except adding Avastin to his chemo because of the risks of perforating his already compromised colon. 

    I hope you can take this info as advice and not me being the grim reaper, but I am just telling his story and hopefully it will help someone else along the way.  A few things I am grateful for at the end- that he never had to have another NG tube, did not suffer his last few months and passed away peacefully at a top rate hospice facility with wonderful care for both he and I.

    Good luck with your 2nd opinion.  Once you get all the info, you and he will have to weigh the pros and cons and make your decision.  I'm sure you'll want him to do whatever is necessary to be cured and live a long life. 

    Sincerely,  Linda

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    LindaK. said:

    Thought I'd chime in

    My husband was originally staged at 2 in December 2012.  I wish we had gone for a 2nd opinion before we finally did 13 months later.  He did follow the oncologist's advice and did the 12 rounds of Folfox, finishing in July 2013.  I had been asking about a PET scan from the beginning and was told each time "He doesn't need it"

    By November of 2013 he was having major bowel issues again only be be blown off by his GI doc, internist, surgeon and oncologist.  He was actually told "Lose weight, you're constipated, eat a better diet, try Linzees, try double Linzees, try triple Linzees"  in early January 2014 he was back in the hospital with totally inept care for 6 days before anyone even ordered a ct scan.  They would do an xray every day to monitor his "constipation". I can barely able to type this without going into a complete rage about his care.  They finally went in when his surgeon saw the large tumor in his small intestines.  My reaction to all of them was "When a patient not even 1 year out with cancer complains about bowel issues, why didn't any of you send him for a scan?"  Complete and utter fools, all of them.

    After his recurrence and stage 4 diagnosis we got the heck out of Dodge to a larger, better and more personal care hospital and oncologists.  First thing they did was order a PET scan which showed some lymph node involvement which they told us was not curable or  treatable by surgery, only containable by Folfiri so he started that new regimen in March 2014.  That went pretty well for a few months, he tolerated Folfiri better than Folfox.  He had another obstruction which landed him in the hospital in May and got c-diff while there which delayed treatment another few weeks.  They added Vectibux which gave him a terrible acne like rash, but he kept at treatment.  In late August he had an obstruction in his bile duct from the lymph node tumors pressing on the outside.  Back in the hospital, endoscopy and stent placed.  Back to the hospital a few weeks later with tumors pressing on duodenum, another stent placed and then the news that chemo is not working.  He passed away 11/2/14.

    Looking back, I wish he'd had a PET scan to start (in December 2012) which may or may not have shown the other issues.  I also wish we had got a 2nd opinion from the larger hospital right away.  sounds like you are getting that 2nd opinion which is good.  My belief is that he had more cancer in his body from the first diagnosis and the 6 months of Folfox just held it at bay.  I also wish his first oncologist was more professional and caring - he told us from the hallway (after we had waited 1 hour in a room and he had a phone to his ear) there was lymph node involvement.  It took him 10 days to come see my husband the 2nd time he was in the hospital for surgery and his office is connected to the darn hellhole my husband was in.  Then he threw us the stage IV bombshell after the surgeon told us he removed necrotic tissue, never mentioning more cancer.  Only when we both started crying did he act surprised we didn't already know that - DUH!

    Knowing what I know now, I don't think my husband would have started chemo, he may have had less time, but it would have been better spent with us.  Of course, none of us have that crystal ball, so each person's decision is their own to make with the information given tot hem.  My husband did everything they suggested except adding Avastin to his chemo because of the risks of perforating his already compromised colon. 

    I hope you can take this info as advice and not me being the grim reaper, but I am just telling his story and hopefully it will help someone else along the way.  A few things I am grateful for at the end- that he never had to have another NG tube, did not suffer his last few months and passed away peacefully at a top rate hospice facility with wonderful care for both he and I.

    Good luck with your 2nd opinion.  Once you get all the info, you and he will have to weigh the pros and cons and make your decision.  I'm sure you'll want him to do whatever is necessary to be cured and live a long life. 

    Sincerely,  Linda

    As you can see, there are

    As you can see, there are varied opinions about the treatment of Stage 2 cancer among oncologists and patients. There is NO excuse for the poor care Linda's husband received.

    i can only share my experience. I was diagnosed stage 2 and had surgery 6 years ago today. I, too, was T3NOMO, moderately differentiated. My CEA pre-op was 7.5; post-op 1.0. With my oncologist, surgeon, and the tumor board, I chose not to do chemotherapy. Although my CEA has hovered between 3.5 and 5.0 for the last several years, my scans are clear and I am NED. Post op, I did have a significant infection requiring 3 mos of IV antibiotics. 

    I am 66 years old and had a lacunar stroke in November. I work full time and feel well.

    As has been said, a second opinion is invaluable.

    wishing you a cancer free future....

    CM

  • christine4life
    christine4life Member Posts: 15

    As you can see, there are

    As you can see, there are varied opinions about the treatment of Stage 2 cancer among oncologists and patients. There is NO excuse for the poor care Linda's husband received.

    i can only share my experience. I was diagnosed stage 2 and had surgery 6 years ago today. I, too, was T3NOMO, moderately differentiated. My CEA pre-op was 7.5; post-op 1.0. With my oncologist, surgeon, and the tumor board, I chose not to do chemotherapy. Although my CEA has hovered between 3.5 and 5.0 for the last several years, my scans are clear and I am NED. Post op, I did have a significant infection requiring 3 mos of IV antibiotics. 

    I am 66 years old and had a lacunar stroke in November. I work full time and feel well.

    As has been said, a second opinion is invaluable.

    wishing you a cancer free future....

    CM

    Chemo Decision for Stage 2a

    Thank you so much for sharing your stories.  We saw our first oncologist this past week and she seemed 50/50 on chemo, but she also ordered an oncotype DX test which will take a couple of weeks to come back.  (It seems like there is so much waiting involved which drives me crazy at times!)  She said if the oncotype test comes back high, she will recommend chemo even though he does not have any other high risk factors.  We are going to MD Anderson next week for a second opinion and will wait on a final decision until we see what they have to say.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    SO SORRY YOU'RE GOING THROUGH THIS.

    My brother was diagnosed in 2011 with stage 2A rectal cancer. He did chemo and radiation, had a lower anterior resection and then did Folfiri. A year later he had a CT scan and was NED with low CEA. They monitored his CEA for a while and within a year it went back up. They did a CT scan and saw nodules on his lungs and something on his liver. They did a PET or MRI (I don't remember) of the liver and saw a tumor. He was biopsied and then he was bumped to stage 4 with mets to the liver and lungs. He was put back on chemo, has had issues since with his heart, so is currently on maintenance chemo to keep the tumors from growing. He is on low doses because of his heart. 

    I'm glad you're getting another opinion. I hate to say it, but sometimes I think it's the luck of the draw. Unfortunately, my brother got a bad hand. 

    I wish you guys the best! Keep us up to date.

    Lin

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    LindaK. said:

    Thought I'd chime in

    My husband was originally staged at 2 in December 2012.  I wish we had gone for a 2nd opinion before we finally did 13 months later.  He did follow the oncologist's advice and did the 12 rounds of Folfox, finishing in July 2013.  I had been asking about a PET scan from the beginning and was told each time "He doesn't need it"

    By November of 2013 he was having major bowel issues again only be be blown off by his GI doc, internist, surgeon and oncologist.  He was actually told "Lose weight, you're constipated, eat a better diet, try Linzees, try double Linzees, try triple Linzees"  in early January 2014 he was back in the hospital with totally inept care for 6 days before anyone even ordered a ct scan.  They would do an xray every day to monitor his "constipation". I can barely able to type this without going into a complete rage about his care.  They finally went in when his surgeon saw the large tumor in his small intestines.  My reaction to all of them was "When a patient not even 1 year out with cancer complains about bowel issues, why didn't any of you send him for a scan?"  Complete and utter fools, all of them.

    After his recurrence and stage 4 diagnosis we got the heck out of Dodge to a larger, better and more personal care hospital and oncologists.  First thing they did was order a PET scan which showed some lymph node involvement which they told us was not curable or  treatable by surgery, only containable by Folfiri so he started that new regimen in March 2014.  That went pretty well for a few months, he tolerated Folfiri better than Folfox.  He had another obstruction which landed him in the hospital in May and got c-diff while there which delayed treatment another few weeks.  They added Vectibux which gave him a terrible acne like rash, but he kept at treatment.  In late August he had an obstruction in his bile duct from the lymph node tumors pressing on the outside.  Back in the hospital, endoscopy and stent placed.  Back to the hospital a few weeks later with tumors pressing on duodenum, another stent placed and then the news that chemo is not working.  He passed away 11/2/14.

    Looking back, I wish he'd had a PET scan to start (in December 2012) which may or may not have shown the other issues.  I also wish we had got a 2nd opinion from the larger hospital right away.  sounds like you are getting that 2nd opinion which is good.  My belief is that he had more cancer in his body from the first diagnosis and the 6 months of Folfox just held it at bay.  I also wish his first oncologist was more professional and caring - he told us from the hallway (after we had waited 1 hour in a room and he had a phone to his ear) there was lymph node involvement.  It took him 10 days to come see my husband the 2nd time he was in the hospital for surgery and his office is connected to the darn hellhole my husband was in.  Then he threw us the stage IV bombshell after the surgeon told us he removed necrotic tissue, never mentioning more cancer.  Only when we both started crying did he act surprised we didn't already know that - DUH!

    Knowing what I know now, I don't think my husband would have started chemo, he may have had less time, but it would have been better spent with us.  Of course, none of us have that crystal ball, so each person's decision is their own to make with the information given tot hem.  My husband did everything they suggested except adding Avastin to his chemo because of the risks of perforating his already compromised colon. 

    I hope you can take this info as advice and not me being the grim reaper, but I am just telling his story and hopefully it will help someone else along the way.  A few things I am grateful for at the end- that he never had to have another NG tube, did not suffer his last few months and passed away peacefully at a top rate hospice facility with wonderful care for both he and I.

    Good luck with your 2nd opinion.  Once you get all the info, you and he will have to weigh the pros and cons and make your decision.  I'm sure you'll want him to do whatever is necessary to be cured and live a long life. 

    Sincerely,  Linda

    Linda

    I'm so sorry that you went through that. No one deserves such crappy care. How appalling!

    It's amazing how much incompetence is in the medical field. 

    Lin

  • nudgie
    nudgie Member Posts: 1,478 Member
    Stage II

    I was DX with Stage II Colon Cancer in July 2006 at the age of 42.  Had surgery to remove tumor and a temp colostomy bag.  My Onc Dr told me since I was 42 that he recommended 12 cycles of chemo, but it was my decision.  He wanted to make sure that there were no micro cancer cells floating in my body; as he put it.  I decided on the chemo and have been clean ever since.

    If I had to do it over again, I would still go through the treatment.

  • danker
    danker Member Posts: 1,276 Member

    Chemo Decision for Stage 2a

    Thank you so much for sharing your stories.  We saw our first oncologist this past week and she seemed 50/50 on chemo, but she also ordered an oncotype DX test which will take a couple of weeks to come back.  (It seems like there is so much waiting involved which drives me crazy at times!)  She said if the oncotype test comes back high, she will recommend chemo even though he does not have any other high risk factors.  We are going to MD Anderson next week for a second opinion and will wait on a final decision until we see what they have to say.

    Stage

    I too was stage 2 boardering on stage 3. Prior to resection I has 5 weeks of radiation coupled with chemo pump 24/7 giving me 1 1/4 

    mltr fu5. Resection included ileostomy, thus 6 weeks with bag.Then reversal of ileostomy.   Developed fistula requiring 6 more weeks with bag.  Fistula healed itself

    from the inside out. Oncologist wanted more weeks of chemo. Surgeon said chemo not necessary.  So had no addional chemo. 

    Colonoscopy 12 months after resection showed NED(no evidence of disease). Last colonoscopy still NED.  Now see oncologist on yearly 

    basis. It will soon be 6yrs since original diagnosis. I'm currently 83 going on 90!!! We all have individual responces.  A second opinion is great.  Believe in good Drs and follow their advice.  Best of luck to you!!!

  • John23
    John23 Member Posts: 2,122 Member
    Always get second opinions.

    Always get second opinions.

    Yes, opinions, that’s plural; more than two if necessary.

    There are good and not-so-good in every profession. Physicians are no different than lawyers or car mechanics; they all can make errors of judgment that can cost you your life or well-being.

    The decision of the course to take regarding treatment should be left to the patient, and the patient should always listen to their inner being for self preservation. It’s the animal instinct inside every one of us that manages to keep us alive. Every living thing has a basic instinct for survival, it’s when we refuse to listen to it, that causes us to lose.

    Only the individual’s own instinct is what should matter, no-one else has the ability to hear another’s instinct.

    You can read my profile and “blog” entries here. My decision was very different than any other poster you will read about here. For me, it worked well. Perhaps for a few billion others it had worked well, otherwise the methods would never have survived and the solutions never repeated. I am not a radical individual, I have no desire to die too soon, and I am not a good gambler; I just try not to allow someone else’s fear to direct my choices for survival.

    The two most important actions for an individual to take when first diagnosed?

    1. Get other opinions. Make sure it’s not from anyone in the same organization, or related. (ask surgeons!)

    2. Listen to your inner instincts, regardless of any “doomsday” dialog.

    We read too often here, of individuals wishing they had taken a different route when they were first considering what route to take. It was that “inner instinct” that was being disregarded due to someone else’s opinion. Try not to allow that to occur.

    We don’t get too many shots at success. Your intuition is there for a purpose. It’s called survival. And we all have it for that reason - to survive against all odds.

    Think clearly; do not allow fear to guide you.

    Above all, “Trust thyself”.

    Be well.

    John