Post operation concern

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Hi all. My dad (stage 3 EC) had his surgery exactly one month ago, and is recovering slowly but surely. He looks a little better each day.

I've heard from many people on this site that it is quite standard for post-operation chemo to take place. Several lymph nodes surrounding the tumor that were removed during the operation tested positive for cancer involvement, but now the doctors are saying that post-operation chemo will not be needed, and that "studies show that there is no evidence that doing post-op chemo decreases the chance of re-occurrence later on".

Can anyone explain why the doctors would opt out of having my dad do post-operation chemo? And also, another (less important) question, but my dad is still unable to talk above a whisper; it isn't painful to talk or anything. He just can't speak loudly at all. Is this something that regularly happens?

Comments

  • TerryV
    TerryV Member Posts: 887
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    Understand your concern
    Hello Altra,

    My husband, also T3N2M0, had his surgery 2 weeks ago. Presurgery, our doctor told us that there might be voice issues following as the vocal chords are "right there" and could be damaged during surgery. He said that it is a temporary condition but does take a while to work through. Perhaps a month isn't enough time?

    I can't answer your post-op chemo question. We are still waiting to find out if post-op chemo is wanted by our oncologist. 7 nodes were removed for Nick, and all were clean. I would agree with you though - I have seen many post here with cancerous nodes after that post-op chemo was ordered for them.

    Best of luck in your research and I wish your father good health and continued strength. He will be added to our prayers.

    Terry
    Wife to Nick, age 48
    dx T3N2M0 05/19/11
    THE 09/08/11
  • chemosmoker
    chemosmoker Member Posts: 501
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    Voice and post-op chemo VS none...
    Altra,
    Welcome.
    I have not had the surgery, but I have learned that it is quite common for the vocal chords (larynx) to be damaged or affected by the surgery being so close to them, in the throat/esophagus. It is not at ALL uncommon for the voice to be hoarse or just a whisper. This should get better with time.
    I am grateful to hear your dad is improving day by day. That s a good sign.

    As for post-op chemo, again, I have done NO chemo, but I think if they feel they got it all, then chemo post-op doesn't change much and it is SUCH an ordeal to go through after that surgery. Recurrence seems to me to be as random as the original cancer itself. They can't predict if it will recur. I feel this is what they mean by "it doesn't matter one way or the other if they do it or not." Their studies are like my observations, I believe.
    My opinion only.

    This is from observation, not experience. Thought I would share what I think.
    Many others with both experience, post-op voice issues, as well as post-op chemo, will respond soon, and you will get better feedback.

    Meantime, welcome to the boards, and glad you posted.
    Hope your dad continues to improve and gets back to his voice soon.

    -Eric
  • NikiMo
    NikiMo Member Posts: 342
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    I would get a second opinion on the chemo
    Hi Altra,

    My husband just had an Ivor Lewis on 9/6, what type of operation did your dad have? I ask because if he had a THE surgery temporary damage to the vocal cords is more likely, of if he had MIE and they reconnected near the neck that is also possible. Since my husband had the IL it was less likely that he would have vocal problems, but when he woke up from surgery he could barely talk and any time he tried to talk loudly his voice would go up an octave. The surgeon wasn't concerned and said it would heal on it's own and was probably due to being intubated during surgery, but they said if it persisted that they would send him to an ENT. My husband's voice has completely returned at this time. Has your dad had his follow up meeting with the surgeon yet? If not, ask whether he should see an ENT doctor for review of the cords. From what I understand the ENT can assess the damage and help to rehab the cords.

    Now on to chemo. I don't agree with your dad not receiving post-op chemo, I am not a doctor but common sense to me would say, he had live cancer removed from him during his surgery, who is to say there aren't a few live cells floating around in his body. Or that his surgeon didn't get out the one node that still has cancer in it. I don't say this to frighten you, but to me it only makes sense to have more chemo. Who advised against more chemo, the surgeon or the oncologist? If your dad has not yet visited his oncologist he should make an appointment. I would agree that doctor's often say there are no reports that say that post-op chemo is effective in stopping recurrance, but I have never heard of someone who had multiple nodes come back positive on the pathology report not have post op chemo. My husband had a clean pathology report and the surgeon still suggested post op chemo. You will hear people here refer to them as having mop up chemo, and that is exactly what it is, a little clean up after chemo. Did your dad handle chemo well the first time around? I would urge your dad to talk to his oncologist, or if he has already has that he talk to another oncologist. Where is your dad seeking treatment?

    Paul and Donna both had post-op chemo because they had one positive node, hopefully they will chime in here or you can go search for some of their posts.

    Hope this helps,

    Niki
    Wife of Jeff T2N1M0
    IL 9/6/11
  • Altra
    Altra Member Posts: 26
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    NikiMo said:

    I would get a second opinion on the chemo
    Hi Altra,

    My husband just had an Ivor Lewis on 9/6, what type of operation did your dad have? I ask because if he had a THE surgery temporary damage to the vocal cords is more likely, of if he had MIE and they reconnected near the neck that is also possible. Since my husband had the IL it was less likely that he would have vocal problems, but when he woke up from surgery he could barely talk and any time he tried to talk loudly his voice would go up an octave. The surgeon wasn't concerned and said it would heal on it's own and was probably due to being intubated during surgery, but they said if it persisted that they would send him to an ENT. My husband's voice has completely returned at this time. Has your dad had his follow up meeting with the surgeon yet? If not, ask whether he should see an ENT doctor for review of the cords. From what I understand the ENT can assess the damage and help to rehab the cords.

    Now on to chemo. I don't agree with your dad not receiving post-op chemo, I am not a doctor but common sense to me would say, he had live cancer removed from him during his surgery, who is to say there aren't a few live cells floating around in his body. Or that his surgeon didn't get out the one node that still has cancer in it. I don't say this to frighten you, but to me it only makes sense to have more chemo. Who advised against more chemo, the surgeon or the oncologist? If your dad has not yet visited his oncologist he should make an appointment. I would agree that doctor's often say there are no reports that say that post-op chemo is effective in stopping recurrance, but I have never heard of someone who had multiple nodes come back positive on the pathology report not have post op chemo. My husband had a clean pathology report and the surgeon still suggested post op chemo. You will hear people here refer to them as having mop up chemo, and that is exactly what it is, a little clean up after chemo. Did your dad handle chemo well the first time around? I would urge your dad to talk to his oncologist, or if he has already has that he talk to another oncologist. Where is your dad seeking treatment?

    Paul and Donna both had post-op chemo because they had one positive node, hopefully they will chime in here or you can go search for some of their posts.

    Hope this helps,

    Niki
    Wife of Jeff T2N1M0
    IL 9/6/11

    Thanks for the replies. I
    Thanks for the replies. I love this forum so much!

    I went and visited my dad for the first time in about a week this morning, and his voice sounded better than it did a week ago. Still quite hoarse, but I definitely noticed an improvement.

    As for the type of surgery he had, I am unsure. I try to get as much information out of him as I can, but it is like pulling teeth sometimes. He was in the hospital for 6 days after the surgery before he was discharged, if that says anything (I think I read that expected hospital stay with Ivor Lewis is a lot longer?) so maybe he did have the MIE.

    He told me quite bluntly today that the doctors said it is quite possible there will be recurrence and very well could be cancerous cells still in his body, so I really don't understand why they wouldn't suggest more chemo. Dad had a rough time with chemo the first time (mostly nausea issues), so I can understand why he isn't begging for more, but still.... it leaves me worried. It's a little hard to try to convince him to do something once his mind is set, and he puts complete faith in his team of doctors. It can be quite frustrating when he won't listen to my suggestions to get a second option.
  • TerryV
    TerryV Member Posts: 887
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    Altra said:

    Thanks for the replies. I
    Thanks for the replies. I love this forum so much!

    I went and visited my dad for the first time in about a week this morning, and his voice sounded better than it did a week ago. Still quite hoarse, but I definitely noticed an improvement.

    As for the type of surgery he had, I am unsure. I try to get as much information out of him as I can, but it is like pulling teeth sometimes. He was in the hospital for 6 days after the surgery before he was discharged, if that says anything (I think I read that expected hospital stay with Ivor Lewis is a lot longer?) so maybe he did have the MIE.

    He told me quite bluntly today that the doctors said it is quite possible there will be recurrence and very well could be cancerous cells still in his body, so I really don't understand why they wouldn't suggest more chemo. Dad had a rough time with chemo the first time (mostly nausea issues), so I can understand why he isn't begging for more, but still.... it leaves me worried. It's a little hard to try to convince him to do something once his mind is set, and he puts complete faith in his team of doctors. It can be quite frustrating when he won't listen to my suggestions to get a second option.

    Your words
    are my husband EXACTLY....

    "It's a little hard to try to convince him to do something once his mind is set, and he puts complete faith in his team of doctors. It can be quite frustrating when he won't listen to my suggestions to get a second option."

    Nick is so much like your father. My husband meet with 1 surgeon, 1 oncologist, and 1 hospital. He really found faith in the team he met and that was "end of discussion".

    You can share frustrations here anytime, Altra. We hear and understand you!

    Terry
  • AlexM
    AlexM Member Posts: 18
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    Post OP Chemo
    Hi Altra,

    I'm more of a reader on this site but my mother recently had surgery as well. We live in Canada, and I have noticed that several things are handled differently here. That being said my mom is also Stage 3 and her pathology report showed 2 out of 12 nodes positive. We were hoping for no Chemo for obvious reasons however her surgeon said that regardless positive nodes or not she would be going for post op chemo for extra precautions. I see that you have already had many responses just thought I'd throw in my two cents. :)

    Take Care,

    Alex
  • Altra
    Altra Member Posts: 26
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    AlexM said:

    Post OP Chemo
    Hi Altra,

    I'm more of a reader on this site but my mother recently had surgery as well. We live in Canada, and I have noticed that several things are handled differently here. That being said my mom is also Stage 3 and her pathology report showed 2 out of 12 nodes positive. We were hoping for no Chemo for obvious reasons however her surgeon said that regardless positive nodes or not she would be going for post op chemo for extra precautions. I see that you have already had many responses just thought I'd throw in my two cents. :)

    Take Care,

    Alex

    Yes, it seems the general
    Yes, it seems the general consensus says he should be getting more chemo. He handled it "well enough" the first time. Yes, there was some vomiting, lots of nausea, some weight loss, but I am sure he could handle another round. He is 65 and in excellent health otherwise.

    "Nick is so much like your father. My husband meet with 1 surgeon, 1 oncologist, and 1 hospital. He really found faith in the team he met and that was "end of discussion"."

    That is my dad exactly. And his name is also Nick. Made me chuckle, despite the seriousness of the situation.
  • Donna70
    Donna70 Member Posts: 852 Member
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    Altra said:

    Yes, it seems the general
    Yes, it seems the general consensus says he should be getting more chemo. He handled it "well enough" the first time. Yes, there was some vomiting, lots of nausea, some weight loss, but I am sure he could handle another round. He is 65 and in excellent health otherwise.

    "Nick is so much like your father. My husband meet with 1 surgeon, 1 oncologist, and 1 hospital. He really found faith in the team he met and that was "end of discussion"."

    That is my dad exactly. And his name is also Nick. Made me chuckle, despite the seriousness of the situation.

    Altra, my dr said nothing proves it works but did it
    Hi,
    I had T3N1MO squamous cell and had the big surgery. One positive node was found during surgery. My onc dr had me do the post op chemo. He said there is no proof that it works but was doing it as insurance and hoping he would not see me come back with a recurrence. Now about the voice. My neck was cut and my vocal cord left side was paralyzed. They told me at first I might get my voice back because in many cases it does come back. Mine never did and I speak in a real high breathy voice. I have had lung issues also. So I am getting ready to get my vocal cord surgery to help me speak with more breathing done easier and also so I could talk more clearly. Hopefully, your Dad is only having temporary issues and his voice will get stronger. But there are alternatives if his voice does not come back. I was not a candidate for the injections in the vocal cord because of jaw issues. Just tell him to be patient, he is only one month out and it takes awhile to get your sea legs back, but you see improvement over the long run. He is lucky to have a good caring daughter like you. take care,
    Donna70
  • Joel C
    Joel C Member Posts: 174
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    Donna70 said:

    Altra, my dr said nothing proves it works but did it
    Hi,
    I had T3N1MO squamous cell and had the big surgery. One positive node was found during surgery. My onc dr had me do the post op chemo. He said there is no proof that it works but was doing it as insurance and hoping he would not see me come back with a recurrence. Now about the voice. My neck was cut and my vocal cord left side was paralyzed. They told me at first I might get my voice back because in many cases it does come back. Mine never did and I speak in a real high breathy voice. I have had lung issues also. So I am getting ready to get my vocal cord surgery to help me speak with more breathing done easier and also so I could talk more clearly. Hopefully, your Dad is only having temporary issues and his voice will get stronger. But there are alternatives if his voice does not come back. I was not a candidate for the injections in the vocal cord because of jaw issues. Just tell him to be patient, he is only one month out and it takes awhile to get your sea legs back, but you see improvement over the long run. He is lucky to have a good caring daughter like you. take care,
    Donna70

    Good question about post-op chemo.


    When I met with my surgeon and oncologist in Boston before my surgery they both said if any cancer was detected at pathology follow up chemo would be needed. Both doctors said if the pathology report was clean then additional chemo would not be necessary. I asked my local oncologist about follow up chemo and he said he had never heard of it regardless of the pathology results. In my case I’m ten months out from MIE with a clean pathology and no follow up chemo and have recently discovered I have a recurrence. “Complete faith in the doctors”? How about absolutely no faith in these guys! I don’t understand how something like cancer treatment that is suppose to have so much money and research into it can be so poorly coordinated.

    Joel
  • paul61
    paul61 Member Posts: 1,391 Member
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    Post Operative chemo is survivable
    Altra,

    I had Ivor Lewis surgery and they found one positive local node in the pathology. I had six rounds of post operative chemo. I know some oncologists say there is no "documented proof" that it is effective, but I would submit that there is plenty of anecdotal evidence that not having post operative chemotherapy is risky at best. I have to say that post operative chemotherapy is a challenge but if I had the choice I would do it over again.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    3/14/2011 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • TerryV
    TerryV Member Posts: 887
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    Altra said:

    Yes, it seems the general
    Yes, it seems the general consensus says he should be getting more chemo. He handled it "well enough" the first time. Yes, there was some vomiting, lots of nausea, some weight loss, but I am sure he could handle another round. He is 65 and in excellent health otherwise.

    "Nick is so much like your father. My husband meet with 1 surgeon, 1 oncologist, and 1 hospital. He really found faith in the team he met and that was "end of discussion"."

    That is my dad exactly. And his name is also Nick. Made me chuckle, despite the seriousness of the situation.

    Thanks for the smile!
    I always told him the stubborness was "just being Nick". Glad to see I was right - it *is* the name :)

    I'll share this with "my Nick" when I get home tonight. I know he will appreciate it.

    Terry
  • Altra
    Altra Member Posts: 26
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    Joel C said:

    Good question about post-op chemo.


    When I met with my surgeon and oncologist in Boston before my surgery they both said if any cancer was detected at pathology follow up chemo would be needed. Both doctors said if the pathology report was clean then additional chemo would not be necessary. I asked my local oncologist about follow up chemo and he said he had never heard of it regardless of the pathology results. In my case I’m ten months out from MIE with a clean pathology and no follow up chemo and have recently discovered I have a recurrence. “Complete faith in the doctors”? How about absolutely no faith in these guys! I don’t understand how something like cancer treatment that is suppose to have so much money and research into it can be so poorly coordinated.

    Joel

    Joel, I remember reading
    Joel, I remember reading some of your posts a few months ago. Very sorry to hear you had a recurrence. :( This definitely makes me even more determined to convince my dad to partake in post-op chemo.
  • sandy1943
    sandy1943 Member Posts: 824
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    Hi, I agree with Paul. It
    Hi, I agree with Paul. It would be risky not to have the chemo. We have been through a lot to get to this stage, so why not go the extra chemo. I've known cancer patients that didn't and had recurrance. I had a node that was positive, but had to stop chemo right after it started, because of completions. I feel blessed that without the chemo, I am still three years cancer free.
    My surgeon is the only one I know that doesn't do radiation for EC. He did a several year study, and feels the outcome is just as good without it. So far I am okay and pray I'll stay that way. I wasn't aware of the common treatment or I would have probably had a lot of doubts in him. He is an excellent thoracic surgeon with a lot of experience, so in a way I'm glad I was ignorant at the time.
    Encourage your dad. I know how hard it is to take more chemo, but I feel it is worth it for that extra assurance.
    Sandra
  • JimboC
    JimboC Member Posts: 264
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    paul61 said:

    Post Operative chemo is survivable
    Altra,

    I had Ivor Lewis surgery and they found one positive local node in the pathology. I had six rounds of post operative chemo. I know some oncologists say there is no "documented proof" that it is effective, but I would submit that there is plenty of anecdotal evidence that not having post operative chemotherapy is risky at best. I have to say that post operative chemotherapy is a challenge but if I had the choice I would do it over again.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    3/14/2011 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!

    Me too
    I agree with Paul also. My treatment plan all along called for Pre-op chemo, Surgery and Post-op chemo. Three of my nodes tested positive and I am now a week and a half away from finishing my third and final post-op round of chemo. And very happy for it. It was rougher after surgery to complete chemo but as my oncologist points out, we're doing this in hopes of a cure. I would strongly suggest a second opinion. I would recommend reading some about the "Magic Chemo Trial" which showed that pre and post op chemo had a definite impact on survival rates. http://www.cancer.gov/clinicaltrials/results/summary/2006/magic-gastric0706 This is such a deadly cancer, we owe it to ourselves to do everything we can within our power to beat the odds.

    I remember two days after I had my mediport inserted in prep for chemo, my wife ran into another cancer patient in the waiting area. He gave her some great advice that I haven't forgotten throughout our treatment. "You have to be your own advocate."

    Good luck!
  • NikiMo said:

    I would get a second opinion on the chemo
    Hi Altra,

    My husband just had an Ivor Lewis on 9/6, what type of operation did your dad have? I ask because if he had a THE surgery temporary damage to the vocal cords is more likely, of if he had MIE and they reconnected near the neck that is also possible. Since my husband had the IL it was less likely that he would have vocal problems, but when he woke up from surgery he could barely talk and any time he tried to talk loudly his voice would go up an octave. The surgeon wasn't concerned and said it would heal on it's own and was probably due to being intubated during surgery, but they said if it persisted that they would send him to an ENT. My husband's voice has completely returned at this time. Has your dad had his follow up meeting with the surgeon yet? If not, ask whether he should see an ENT doctor for review of the cords. From what I understand the ENT can assess the damage and help to rehab the cords.

    Now on to chemo. I don't agree with your dad not receiving post-op chemo, I am not a doctor but common sense to me would say, he had live cancer removed from him during his surgery, who is to say there aren't a few live cells floating around in his body. Or that his surgeon didn't get out the one node that still has cancer in it. I don't say this to frighten you, but to me it only makes sense to have more chemo. Who advised against more chemo, the surgeon or the oncologist? If your dad has not yet visited his oncologist he should make an appointment. I would agree that doctor's often say there are no reports that say that post-op chemo is effective in stopping recurrance, but I have never heard of someone who had multiple nodes come back positive on the pathology report not have post op chemo. My husband had a clean pathology report and the surgeon still suggested post op chemo. You will hear people here refer to them as having mop up chemo, and that is exactly what it is, a little clean up after chemo. Did your dad handle chemo well the first time around? I would urge your dad to talk to his oncologist, or if he has already has that he talk to another oncologist. Where is your dad seeking treatment?

    Paul and Donna both had post-op chemo because they had one positive node, hopefully they will chime in here or you can go search for some of their posts.

    Hope this helps,

    Niki
    Wife of Jeff T2N1M0
    IL 9/6/11

    This comment has been removed by the Moderator
  • mruble
    mruble Member Posts: 174
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    Post-op chemo
    My husband had positive nodes and there was no question that he was getting post-op chemotherapy but another patient (same oncologist) had many positive nodes and clean up chemotherapy was not recommended for him. Apparently the doctors were disappointed with how the pre-op chemotherapy worked and weren't anxious to try a different protocol until there was really a reason to do so. The second opinion agreed. While the patient himself was fine with the decision, I know his wife worries constantly about recurrence.
    Mary
  • Altra
    Altra Member Posts: 26
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    mruble said:

    Post-op chemo
    My husband had positive nodes and there was no question that he was getting post-op chemotherapy but another patient (same oncologist) had many positive nodes and clean up chemotherapy was not recommended for him. Apparently the doctors were disappointed with how the pre-op chemotherapy worked and weren't anxious to try a different protocol until there was really a reason to do so. The second opinion agreed. While the patient himself was fine with the decision, I know his wife worries constantly about recurrence.
    Mary

    The thing is, from what my
    The thing is, from what my dad said, the pre-operation chemo DID shrink the tumor considerably. So I just don't understand why in the world they are telling him not to do post-op chemo as well, especially with positive nodes.
  • chemosmoker
    chemosmoker Member Posts: 501
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    Altra said:

    The thing is, from what my
    The thing is, from what my dad said, the pre-operation chemo DID shrink the tumor considerably. So I just don't understand why in the world they are telling him not to do post-op chemo as well, especially with positive nodes.

    DON'T take NO for an answer!!!!
    Altra,
    In MY opinion, ANY reputable cancer center will do post-op chemo after surgery. I would not take NO for an answer. I have YET to see but a small handful who did NOT have post-op chemo that have not had a recurrence. It is just not worth it to have come so far to make a mistake like that, and I am oposed to chemo on principal personally. THAT should say it all.
    GET THE CHEMO or go somewhere that will give it to him! Positive nodes or NOT!

    I know they don't LIKE to give it too soon after being weakened from the surgery, but I know of may who have started WEEKS after the surgery or sooner, and are doing fine. All the rest, save a few (some are here posting) have had a recurrence as I said.

    God bless and good luck. As it was said, YOU MUST BE THE ADVOCATE and teach these doctors and demand what you want, or else.

    -Eric
  • Donna70
    Donna70 Member Posts: 852 Member
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    DON'T take NO for an answer!!!!
    Altra,
    In MY opinion, ANY reputable cancer center will do post-op chemo after surgery. I would not take NO for an answer. I have YET to see but a small handful who did NOT have post-op chemo that have not had a recurrence. It is just not worth it to have come so far to make a mistake like that, and I am oposed to chemo on principal personally. THAT should say it all.
    GET THE CHEMO or go somewhere that will give it to him! Positive nodes or NOT!

    I know they don't LIKE to give it too soon after being weakened from the surgery, but I know of may who have started WEEKS after the surgery or sooner, and are doing fine. All the rest, save a few (some are here posting) have had a recurrence as I said.

    God bless and good luck. As it was said, YOU MUST BE THE ADVOCATE and teach these doctors and demand what you want, or else.

    -Eric

    thanks for your good words
    Eric,
    thanks for giving Altra a really good response to this question. I am surviving Stage III with positive node before and after surgery and so glad my dr was an advocate for post op chemo. Everyone on this board caregivers and patients alike must always remember the best advocate for their best care is themselves!!! I got my surgery early December and started post op chemo in February and it was hard but I am doing fine with all clear scans and wish that was the outcome for so many on this board who were not as fortunate. You are so right about demanding the level of care you deserve. Thanks for putting it so succinctly. take care,
    Donna70