To chemo or not to chemo ?

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Hello,

My dad has undergone a colon resection surgery to remove a baseball sized tumor from his sigmoid colon.  They removed 14" of his colon and removed 16 lymph nodes.

The good news is that there was no sign of cancer anywhere else.  And all 16 lymph nodes were clear. 

The oncologist says we are in a grey area.  Normally since this is stage 2a they do not recommend chemo.  But since the tumor was large, he recommends 6 sessions of FULFOX chemo.  

To add to that, he said from his experience, recurrence chance is 20% and by taking chemo the recurrence chance is reduced to 15%.

5% is not much.

So he agreed that this is not an easy decision.

The one thing that bothers me is that I have friends who have had chemo and not only did they get recurrence, but their recurrence is all over their body.

I cannot help but wonder if the chemo causes damage that facilitate the cancer to return everywhere?

What do you guys think about chemo or no chemo in this situation?

Has anyone been in a similar situation and decided to skip chemo?

 

 

 

 

 

 

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Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
    edited November 2016 #2
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    Welcome to the forum

    Very hard decisions ahead of you all an I wish you well. 

    Tru

  • vtspa6
    vtspa6 Member Posts: 172
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    A dear friend of mine decided

    A dear friend of mine decided not to do chemo after his tumor was removed with resection of the colon.  Then 4 years later he had mets to the liver. It is a hard decision to make!

  • NewHere
    NewHere Member Posts: 1,427 Member
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    Gray Zone For Sure

    From what I was told, normally 2A is not chemo.  Definately look for other opinions without a doubt before going forward.  Here is a recent thread with some discussion that goes through issues and options.  Worth the read.

    http://csn.cancer.org/node/306525

    "To add to that, he said from his experience, recurrence chance is 20% and by taking chemo the recurrence chance is reduced to 15%. 5% is not much."

    Just to throw stats around, the change there is not 5%.  You are actually reducing the risk by 25% :)  That is partly tounge in cheek, but also shows how stats can be phrased.  Make sure to dig into information until you are comfortable with the answers.

    I did chemo because I was IIIC [really IVA when it comes down to it, the met was there in the lungs, just a tad too small to id for sure and chemo kept it in check.]  Had extensive lymph node involvement.  The chemo would take me down from 50-60% reoccurance, down to 25% to 30%.  Of course the met threw that out the window, though it really is not an reoccurance :)

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
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    Welcome and sorry, baseball

    Welcome and sorry, baseball size is a significant tumor, and I don't believe Folfox makes you more susceptable to metastasis. That would be established by now, I'd think. Having said that, my lesion on the sigmoid section was originally 5cm, with 2 of 17 nodes involved, and the chemo didn't stop the cancer from getting to my liver, but nine years later it hasn't lead to a spread, I'm NED.[sorry]  It's a tough choice, the chemo wasn't terribly rough on me, but there are people here who feel wrecked by it, suffering some permanent effects. You could do watchful waiting and get a scan every three months, in fact you probably will regardless of your dad's choice, but if something pops up, you'll second-guess that decision endlessly. We have people who have used other treatments, but they'll have to speak on them. Life has it's "gambling" moments, and this is surely one of them. Best of luck to your pop.................................Dave

  • John23
    John23 Member Posts: 2,122 Member
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    Pre or post chemobrain 'tis the question.....

    A very good read is HERE.

    Click in good health!

    John

     

  • LindaK.
    LindaK. Member Posts: 506 Member
    edited November 2016 #7
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    No one can be sure of anything with cancer

    I'm sorry your dad is going through what so many have before him.

    My husband was diagnosed in Dec 2012 with what they said was 2A colon cancer with a large tumor, but not as big as a baseball, more like a pool ball.  He had had 3 or 4 colonoscopies from age 50 to 9 prior to his diagnosis.  He had several polyps removed each time, but we were never told any were cancerous or pre-cancerous.  He had the tumor removed in a colon resection where they took about 2 feet of his colon.  There was no lymph node involvement nor had the cancer gone outside the colon's first layer.

    After his surgery recovery, the oncologist presented us with similar choices.  Our daughter (a nurse) and I encouraged him to do the 12 rounds of Folfox they recommended.  We thought he should try it and that way he would know he did all he could to hopefully prevent a recurrence.  He did pretty well during chemo, had a few hiccups, but he didn't work so he was able to rest and recover as he needed.  He finished 12 rounds, but the oxaliplatin was stopped after 5 rounds.  Within a few months he was complaining about new abdominal pains, went back to all his doctors and then had his 1 year colonoscopy follow up.  No one recommended a scan of any kind and told him to "lose weight".  He struggled through the holidays and the only medical person helping his was a kind Nurse Practitioner at his GI doctor's office who kept pushing for tests.  He ended up in the ED in early January, 2014 and another large tumor was finally found in his small intestine.  Another resection and very difficult hospital stay with many missteps by his medical team.  His then oncologist finally made it to the hospital to see him 6 days after surgery even though his office is connected to the hospital and I called them to tell them about the new cancer.  Also, our former PCP saw me in the hospital hallway and told me he was concerned about "two other spots" which no one had told us about.  My heart sank when I heard those words.

    We switched to a larger much more professional cancer center in our city where he started Folfiri a few months later.  He was now stage IV since it had obviously spread.  He did OK to start but had several more health issues, a few trips to the ED and a few hospital admissions, never could get onto a long regimen of the chemo.  He finally had a PET scan at the new center where they showed us the two lymph nodes also involved. 

    Sadly, he passed away on 11/2/14 from his colon cancer that spread.  I blame many people in that crappy hospital and oncologist's office, but in the end, things may not have been different.  You just never know.  I think my husband's cancer was very aggressive and fast growing and they did not follow up with him very seriously after his finished Folfox and had new issues.

    So, he followed the most aggressive treatment and it still came back. I don't remember the specific odds they gave us at the beginning, but he would have definitely fallen into the 5 or 10% in stage 2B that don't live past 5 years.  As he said way back then, "Someone has to be in that minority"

    Some people live long and healthy lives with or without treatment, some do everything and still don't make it.  Your father has to make his decision and be confident with it.  He will probably always have anxiety about cancer.  There are many people here who can offer good advice and their experiences.  I wish your father a long healthy life

    Linda

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    LindaK. said:

    No one can be sure of anything with cancer

    I'm sorry your dad is going through what so many have before him.

    My husband was diagnosed in Dec 2012 with what they said was 2A colon cancer with a large tumor, but not as big as a baseball, more like a pool ball.  He had had 3 or 4 colonoscopies from age 50 to 9 prior to his diagnosis.  He had several polyps removed each time, but we were never told any were cancerous or pre-cancerous.  He had the tumor removed in a colon resection where they took about 2 feet of his colon.  There was no lymph node involvement nor had the cancer gone outside the colon's first layer.

    After his surgery recovery, the oncologist presented us with similar choices.  Our daughter (a nurse) and I encouraged him to do the 12 rounds of Folfox they recommended.  We thought he should try it and that way he would know he did all he could to hopefully prevent a recurrence.  He did pretty well during chemo, had a few hiccups, but he didn't work so he was able to rest and recover as he needed.  He finished 12 rounds, but the oxaliplatin was stopped after 5 rounds.  Within a few months he was complaining about new abdominal pains, went back to all his doctors and then had his 1 year colonoscopy follow up.  No one recommended a scan of any kind and told him to "lose weight".  He struggled through the holidays and the only medical person helping his was a kind Nurse Practitioner at his GI doctor's office who kept pushing for tests.  He ended up in the ED in early January, 2014 and another large tumor was finally found in his small intestine.  Another resection and very difficult hospital stay with many missteps by his medical team.  His then oncologist finally made it to the hospital to see him 6 days after surgery even though his office is connected to the hospital and I called them to tell them about the new cancer.  Also, our former PCP saw me in the hospital hallway and told me he was concerned about "two other spots" which no one had told us about.  My heart sank when I heard those words.

    We switched to a larger much more professional cancer center in our city where he started Folfiri a few months later.  He was now stage IV since it had obviously spread.  He did OK to start but had several more health issues, a few trips to the ED and a few hospital admissions, never could get onto a long regimen of the chemo.  He finally had a PET scan at the new center where they showed us the two lymph nodes also involved. 

    Sadly, he passed away on 11/2/14 from his colon cancer that spread.  I blame many people in that crappy hospital and oncologist's office, but in the end, things may not have been different.  You just never know.  I think my husband's cancer was very aggressive and fast growing and they did not follow up with him very seriously after his finished Folfox and had new issues.

    So, he followed the most aggressive treatment and it still came back. I don't remember the specific odds they gave us at the beginning, but he would have definitely fallen into the 5 or 10% in stage 2B that don't live past 5 years.  As he said way back then, "Someone has to be in that minority"

    Some people live long and healthy lives with or without treatment, some do everything and still don't make it.  Your father has to make his decision and be confident with it.  He will probably always have anxiety about cancer.  There are many people here who can offer good advice and their experiences.  I wish your father a long healthy life

    Linda

    Hello Linda

    I thought of you immedietely I saw this post. I even tried to find your profile but had forgotten about the K on the end of your handle. 

    You are so good to come back to the forum, now that your husband has passed. 

    I hope you are coping. Know that you are thought about still. 

    TRU

  • mozart13
    mozart13 Member Posts: 118
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    "I want to live"

    The other day I had patient (I work in HC), he is been cancer free for 14 years.

    14 years ago he had surgery for rectal cancer, than chemo, radiation and another chemo(so call sendwich therapy).

    When he went for surgery he wasn't sure how they gonna remove it, will there be permanent bag or no, he was ready

    for any option, he said "I want to live".

    Good luck whichever way he is gonna go!

  • Sadnana
    Sadnana Member Posts: 1
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    My husband has colon cancer

    My husband has colon cancer which has spread to his liver.  They cannot do any surgery and have done chemo, which really did not do much. He had to stop taking the chem due to side effects.  He had lung cancer 10 years ago and had several rounds of radiation and chemo and they say that is cured.  Thankful for that.  He only has like 40% of one lung functioning and is on oxgyen 24/7.  This complicates treatment.  His last scan says the cancer is growing but has not spread from the liver so far.  The chemo is at this point for quantity not quantity and he is does not want to continue that avenue.  So I guess my question is has anyone had this situation and once the cancer starts to grow how do we know what to expect next. He has not had any blockages in the colon yet and wondering if that is something we should worry about.  They would not do any surgery due to it being in his liver and the lung issue.

  • Brajesh
    Brajesh Member Posts: 10
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    LindaK. said:

    No one can be sure of anything with cancer

    I'm sorry your dad is going through what so many have before him.

    My husband was diagnosed in Dec 2012 with what they said was 2A colon cancer with a large tumor, but not as big as a baseball, more like a pool ball.  He had had 3 or 4 colonoscopies from age 50 to 9 prior to his diagnosis.  He had several polyps removed each time, but we were never told any were cancerous or pre-cancerous.  He had the tumor removed in a colon resection where they took about 2 feet of his colon.  There was no lymph node involvement nor had the cancer gone outside the colon's first layer.

    After his surgery recovery, the oncologist presented us with similar choices.  Our daughter (a nurse) and I encouraged him to do the 12 rounds of Folfox they recommended.  We thought he should try it and that way he would know he did all he could to hopefully prevent a recurrence.  He did pretty well during chemo, had a few hiccups, but he didn't work so he was able to rest and recover as he needed.  He finished 12 rounds, but the oxaliplatin was stopped after 5 rounds.  Within a few months he was complaining about new abdominal pains, went back to all his doctors and then had his 1 year colonoscopy follow up.  No one recommended a scan of any kind and told him to "lose weight".  He struggled through the holidays and the only medical person helping his was a kind Nurse Practitioner at his GI doctor's office who kept pushing for tests.  He ended up in the ED in early January, 2014 and another large tumor was finally found in his small intestine.  Another resection and very difficult hospital stay with many missteps by his medical team.  His then oncologist finally made it to the hospital to see him 6 days after surgery even though his office is connected to the hospital and I called them to tell them about the new cancer.  Also, our former PCP saw me in the hospital hallway and told me he was concerned about "two other spots" which no one had told us about.  My heart sank when I heard those words.

    We switched to a larger much more professional cancer center in our city where he started Folfiri a few months later.  He was now stage IV since it had obviously spread.  He did OK to start but had several more health issues, a few trips to the ED and a few hospital admissions, never could get onto a long regimen of the chemo.  He finally had a PET scan at the new center where they showed us the two lymph nodes also involved. 

    Sadly, he passed away on 11/2/14 from his colon cancer that spread.  I blame many people in that crappy hospital and oncologist's office, but in the end, things may not have been different.  You just never know.  I think my husband's cancer was very aggressive and fast growing and they did not follow up with him very seriously after his finished Folfox and had new issues.

    So, he followed the most aggressive treatment and it still came back. I don't remember the specific odds they gave us at the beginning, but he would have definitely fallen into the 5 or 10% in stage 2B that don't live past 5 years.  As he said way back then, "Someone has to be in that minority"

    Some people live long and healthy lives with or without treatment, some do everything and still don't make it.  Your father has to make his decision and be confident with it.  He will probably always have anxiety about cancer.  There are many people here who can offer good advice and their experiences.  I wish your father a long healthy life

    Linda

    Sorry to hear Linda - thank

    Sorry to hear Linda - thank you for sharing

  • Brajesh
    Brajesh Member Posts: 10
    edited December 2016 #12
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    Sadnana said:

    My husband has colon cancer

    My husband has colon cancer which has spread to his liver.  They cannot do any surgery and have done chemo, which really did not do much. He had to stop taking the chem due to side effects.  He had lung cancer 10 years ago and had several rounds of radiation and chemo and they say that is cured.  Thankful for that.  He only has like 40% of one lung functioning and is on oxgyen 24/7.  This complicates treatment.  His last scan says the cancer is growing but has not spread from the liver so far.  The chemo is at this point for quantity not quantity and he is does not want to continue that avenue.  So I guess my question is has anyone had this situation and once the cancer starts to grow how do we know what to expect next. He has not had any blockages in the colon yet and wondering if that is something we should worry about.  They would not do any surgery due to it being in his liver and the lung issue.

    Please repost

    Hello Sadnana,

    Please repost your question in the main forum which will get you more responses, I think you might have acccidentally posted in this thread.

  • Brajesh
    Brajesh Member Posts: 10
    edited December 2016 #13
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    Thank you

    Thank you everyone for your responses and also your additional threads and links to read.  These have been very helpful in helping my dad consider his options.

  • Brajesh
    Brajesh Member Posts: 10
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    John23 said:

    Pre or post chemobrain 'tis the question.....

    A very good read is HERE.

    Click in good health!

    John

     

    Very interesting,
    thank you

    Very interesting,

    thank you

  • Brajesh
    Brajesh Member Posts: 10
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    NewHere said:

    Gray Zone For Sure

    From what I was told, normally 2A is not chemo.  Definately look for other opinions without a doubt before going forward.  Here is a recent thread with some discussion that goes through issues and options.  Worth the read.

    http://csn.cancer.org/node/306525

    "To add to that, he said from his experience, recurrence chance is 20% and by taking chemo the recurrence chance is reduced to 15%. 5% is not much."

    Just to throw stats around, the change there is not 5%.  You are actually reducing the risk by 25% :)  That is partly tounge in cheek, but also shows how stats can be phrased.  Make sure to dig into information until you are comfortable with the answers.

    I did chemo because I was IIIC [really IVA when it comes down to it, the met was there in the lungs, just a tad too small to id for sure and chemo kept it in check.]  Had extensive lymph node involvement.  The chemo would take me down from 50-60% reoccurance, down to 25% to 30%.  Of course the met threw that out the window, though it really is not an reoccurance :)

    Thanks its a good read

    Thanks its a good read

  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
    edited December 2016 #16
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    Should Stage 2A do chemo

    A difficult decision, but remember that chemo can always be reduced or even stopped if the side effects are intolerable.  I would suggest trying it, so that it is clear your has tried everything.  As I said, he can always stop.

     

    Good luck,

  • LindaK.
    LindaK. Member Posts: 506 Member
    edited December 2016 #17
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    Trubrit said:

    Hello Linda

    I thought of you immedietely I saw this post. I even tried to find your profile but had forgotten about the K on the end of your handle. 

    You are so good to come back to the forum, now that your husband has passed. 

    I hope you are coping. Know that you are thought about still. 

    TRU

    Hi

    Thanks, Sue. I check in once in a while and will comment when I think I can offer some helpful (or maybe not) information. I am doing fine, just passed the 2 year mark of my husband's death.  I miss him terribly but now I am concentrating on myself.  I am feeling better than I have in years.  Our older grandson turns 16 next week, it will be bittersweet that my husband isn't here to celebrate with him, but he's always in our hearts and I feel his presence often.

    Linda

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
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    I just saw this post. Sorry

    I just saw this post. Sorry for my delayed response. I was diagnosed with 2A colon cancer and a large tumor ( though not as large as your Dad's). I chose no chemo and have been 7 years NED. I am closely monitored because I have a significant family history of colon cancer. It's very individual with no right or wrong. I met with the tumor board and 6 out of 9 recommended no chemo.

    Linda, so happy to see your post And that you are doing well.

    CM

  • kmygil
    kmygil Member Posts: 876 Member
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    A little late response

    Hi.  I had 2B stage colon cancer with no affected nodes out of 19, and my oncologist offered me the Folfox saying I was likely 85% clear without the chemo, but with the chemo I was probably at 90%.  When I thought about it I realized that 5% isn't that much when you're talking about a raise, but it's the world when you're talking about your life.  So I opted for the chemo and managed 9 of 12 treatments.  Since then the recommended treatments have been lowered to 9.  It's been 10 years, so I'm sure that protocols have been revised in the interim.  But I really thought about that extra 5%.  

    All that being said, the chemo did leave lasting effects on my body and life, like neuropathy, intermittant bone pain, easy to fatigue, and other, smaller things.  You have to weigh everything and come to the decision that feels right for you.  I still think I did the right thing for me, even with the after-effects.  What the right thing for your Dad is may be different.

     

  • ellend
    ellend Member Posts: 109 Member
    edited December 2016 #20
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    Chemo or not

    I was faced with a similar decision and in the end opted to do the chemo. I am not sure exactly what the initial diagnosis was because the doctors were not sure how much of the rectal wall the tumor had extended into. I heard everything from 2A to 3A. The biopsy showed no evidence of cancer in the lymph nodes, so I was very borderline about doing the mop up chemo. The recurrence reduction was pretty much the same as others who had similar diagnosis.

    I had radiation/chemo before surgery to shrink the tumor, so the FOLFOX chemo regimen recommended was 8 treatments, one every 2 weeks.  After the 2nd week they stopped the 5FU combined with leucovorin infusion, but kept me on the oxaliplatin and the 5FU pump. I was very fatigued after removing the pump from about the 5th treatment. I still have sensitivity to cold in my hands and feet and some minor neuropathy. My platelet count is also still low. The last infusion was on Halloween with the pump disconnect the following Wednesday. I'm hoping the symptoms will abate over time. Based on other's experiences, I had fairly typical side effects, but fairly minor all things considered. There are risks associated with either choice. Like everyone else said, these are things that you have to weigh for yourself.

    Good Luck!

  • BillO60
    BillO60 Member Posts: 72
    edited December 2016 #21
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    Chemo (late to the party.. again)

    Brajesh,

    As you might have noticed, t's an impossible question to answer outright.  My story isn't much different than others.  Diagnosed with colo-rectal cancer. Went through radiation therapy every weekday for 6 weeks.  That was combined with Capcetibine (oral chemotherapy) every day for 6 weeks. Went through surgery and came out with a temporary ileostomy.  Went on 3 week cycles for 6 months of FolFox without the 5FU.  Went off the chemo.  3 months later they did a PET/CT scan and discovered mets to liver and lung. 

    Not everyone responds to chemo the same way.  Now I'm on a Panitumamab/FolFiri regimen. Just finished 10th cycle of 12 and it seems to be working based on recent scans (tumors shrinking).  I'll take January off and go back in February for another scan.  Then possibly ablation to remove the tumors in my liver. 

    Will I consider myself cured if they tell me that everything appears good?  Nope.  I went through this with my late wife in the 1990's.  She went through surgery and 5FU. Her CEA's would drop while on treatment and then would jump a couple of months later and another tumor would show up.  This went on for 4 years until there was nothing else they could do.

    I know there's no absolutes so I've put up with the chemo and the side effects.

    Good luck making your decision.