Question about adjuvant treatments post surgical removal of lung mets

califsue
califsue Member Posts: 80
edited March 2014 in Colorectal Cancer #1
I am in the process of trying to decide what treatment plan to follow after the removal of 4 lung mets and 6 mediastinal lymph nodes. Unfortunately, I felt that my surgeon wasn't as aggressive as I had hoped. The plan going into surgery was that he might remove my RUL if necessary. Instead he removed a large wedge (2 cm) but did not get clean margins (%$&*&&^%&*). However, he said that his decision not to remove my RUL was influenced by the fact that he was not able to get a clean margin around my L Hilar Lymph Node. (I!'m still trying to make sense out of his reasoning!)

So I essentially am dealing with "incomplete" resections to both of these areas. My surgeon, oncologist, and radiationoncologist are recommending stereotactic radiation to the margin in the RUL and conformal radiation to the mediastinal lymph node area (can't do stereotactic radiation to this area as the node bed is too dangerously close to the vena cava and plumonary artery). I have asked about chemo and both my surgeon and oncologist say that it is not effective against lung mets AND since we removed all visible signs of cancer, there would be nothing to monitor. They said that I could be on chemo that I was resistant to for a year and for what? I am being seen at a major hospital, but am going for a second opinion at a major cancer center.

Has anyone had post-surgical radiation treatments to the lung? Has anyone had post-surgical chemo treatments to the lung?

I would very much appreciate any comments/suggestions. It's so incredibly difficult to make these decisions. You feel like your life is at stake. It helps a lot to hear from others who are having to make similar treatment decisions.

Thanks in advance for your help,
Susan

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Chemo after surgery
    Well, that is news to me. I have been on Erbitux for lung mets with very good results for a while. They have shrunk my mets significantly. They other things you mention I do not know about other than get a second opinion.
    -phil
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    #3
    Lung Mets
    Sorry Susan... I haven't had lung surgery or post-surgery chemo, although I'm sure I've heard of that by others on this board. I'm afraid I didn't understand all the medical terminology you used so am not sure I understood what the doctors said. Like you, I'd question why they didn't take the RUL (??) out if that was the original intent... and that they should explain it to you so that you understand.

    As for the chemo and maybe you are resistant to it. I can sort of understand that one. Right now I have lung mets, but they are so small my oncologist (who I trust with my life) has said that she'd rather I didn't go on chemo at this point. The mets are so small she can pretty much guarantee they will be resistant to chemo so I would be exposing my body to this chemo for no benefit. If the mets grow, then we can use the chemo to shrink them, but the idea would be that we would want to shrink them to where they are now.

    So that might be what they mean about you being resistant right now. If all signs of cancer have been removed, SHOULD there be any microscopic cells still in your lungs, then the chemo won't have any affect on them because they are too small... so better to save the chemo in case you do need it one day.

    Hugggggs,

    Cheryl
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #4
    Hi Susan,
    Following a PET
    Hi Susan,

    Following a PET scan that showed intense metabolic activity in my lungs, I did 7 months of chemo. Although the nodules did not shrink in size, the metabolic activity did cease- my PET 4 weeks ago shows no metabolic activity in me anywhere. I am now on "maintenance" chemo (Avastin and Xeloda) to "keep it that way". My oncologist did mention stereotactic radiation could be an option in the future, but my nodules are too small in size for that right now.
    So, I am puzzled as to why your surgeon and onc say chemo doesn't work for lung mets.
    I think you are definitely wise to seek another opinion.

    Hope you get more proactive ideas from someone else.

    Take care,
    Lisa
  • califsue
    califsue Member Posts: 80
    #5
    lisa42 said:

    Hi Susan,
    Following a PET
    Hi Susan,

    Following a PET scan that showed intense metabolic activity in my lungs, I did 7 months of chemo. Although the nodules did not shrink in size, the metabolic activity did cease- my PET 4 weeks ago shows no metabolic activity in me anywhere. I am now on "maintenance" chemo (Avastin and Xeloda) to "keep it that way". My oncologist did mention stereotactic radiation could be an option in the future, but my nodules are too small in size for that right now.
    So, I am puzzled as to why your surgeon and onc say chemo doesn't work for lung mets.
    I think you are definitely wise to seek another opinion.

    Hope you get more proactive ideas from someone else.

    Take care,
    Lisa

    Thank you all - confused
    Many thanks to all of you who responded. I really appreciate your information. I'm really confused right now and have decided to hold off the radiation until I get a second opinion. After reading your posts, it doesn't make any more sense to get radiation than it does to get chemo if they removed all visible cancer. Why not watch and wait to see if there is a recurrence? I suppose I am more at risk to get a recurrence since the margins were not clear, i.e. the path report showed that microscopic tumor cells were left behind.

    Perhaps my doctors mean that chemo won't work for my lung mets since they appeared within 6 months of finishing Folfox? So many questions. I am going to share your information with my surgeon and my oncologist.

    I'm very glad to hear that chemo is working for your lung mets. Lisa, when you say that your PET showed no metabolic activity do you mean that your lungs did not light up at all, there was no signal? Wow, that is terrific.

    Thank you so much,
    Susan
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
    califsue said:

    Thank you all - confused
    Many thanks to all of you who responded. I really appreciate your information. I'm really confused right now and have decided to hold off the radiation until I get a second opinion. After reading your posts, it doesn't make any more sense to get radiation than it does to get chemo if they removed all visible cancer. Why not watch and wait to see if there is a recurrence? I suppose I am more at risk to get a recurrence since the margins were not clear, i.e. the path report showed that microscopic tumor cells were left behind.

    Perhaps my doctors mean that chemo won't work for my lung mets since they appeared within 6 months of finishing Folfox? So many questions. I am going to share your information with my surgeon and my oncologist.

    I'm very glad to hear that chemo is working for your lung mets. Lisa, when you say that your PET showed no metabolic activity do you mean that your lungs did not light up at all, there was no signal? Wow, that is terrific.

    Thank you so much,
    Susan

    Hi Susan
    Do bring all of this up with your team, and if you are not satisfied, get another opinion. You don't get too many second chances here.
    Best wishes...
    -phil
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #7
    califsue said:

    Thank you all - confused
    Many thanks to all of you who responded. I really appreciate your information. I'm really confused right now and have decided to hold off the radiation until I get a second opinion. After reading your posts, it doesn't make any more sense to get radiation than it does to get chemo if they removed all visible cancer. Why not watch and wait to see if there is a recurrence? I suppose I am more at risk to get a recurrence since the margins were not clear, i.e. the path report showed that microscopic tumor cells were left behind.

    Perhaps my doctors mean that chemo won't work for my lung mets since they appeared within 6 months of finishing Folfox? So many questions. I am going to share your information with my surgeon and my oncologist.

    I'm very glad to hear that chemo is working for your lung mets. Lisa, when you say that your PET showed no metabolic activity do you mean that your lungs did not light up at all, there was no signal? Wow, that is terrific.

    Thank you so much,
    Susan

    nothing lit up
    Susan,

    Yes, when I said that my PET showed no metabolic activity, I meant that the lung nodules that still showed up on my CT scan did not show lit up on the PET scan- in fact nothing at all lit up on the PET (except, of course, the areas of the body that normally light up- brain, bladder, etc.). I thought it was pretty terrific, too- thanks- so it IS possible!

    I can understand your confusion and I'm glad you're going for the second opinion.

    Do take care-
    Lisa
  • taraHK
    taraHK Member Posts: 1,952 Member
    #8
    3 times
    Hi Susan,

    I was originally diagnosed with Stage III rectal cancer. Two years after treatment, I had a solitary lung me (surgically removed, with clear margins) - then follow-up chemo. Two year later, exact same thing, 1.5 years later, exact same thing.

    I haven't had postsurgical radiation treatments to the lung (I had clear margins each time). My inclination would be to go for the radiation, if they think they can zap some nasties.

    Having "mop up" chemo (after surgery, when there is no more evidence of disease) is pretty controversial. My oncologist and I decided to go ahead -- but there are several major cancer centres which would not recommend chemo under those circumstances, and I respect that. My onc feels the jury is about 50:50 in my case. But, I lean towards aggressive. It's a very personal choice. I feel: I'm relatively young, relatively healthy, and if the side effects are manageable, I'd rather be "doing something" than sitting around waiting. For me, to be honest, the chemo may just be postponing the interval until my next recurrence. But that's OK -- if I can buy some time, wait for some new drug cocktails to emerge, that is good.

    I am on maintenance xeloda (the pill) now. Although I have "failed" with previous cocktails involving 5FU, I'm hoping to trick my body this time!

    Good luck to you with the decision-making as well as any further treatment you undertake. These are highly personal decisions.

    Tara
  • califsue
    califsue Member Posts: 80
    #9
    taraHK said:

    3 times
    Hi Susan,

    I was originally diagnosed with Stage III rectal cancer. Two years after treatment, I had a solitary lung me (surgically removed, with clear margins) - then follow-up chemo. Two year later, exact same thing, 1.5 years later, exact same thing.

    I haven't had postsurgical radiation treatments to the lung (I had clear margins each time). My inclination would be to go for the radiation, if they think they can zap some nasties.

    Having "mop up" chemo (after surgery, when there is no more evidence of disease) is pretty controversial. My oncologist and I decided to go ahead -- but there are several major cancer centres which would not recommend chemo under those circumstances, and I respect that. My onc feels the jury is about 50:50 in my case. But, I lean towards aggressive. It's a very personal choice. I feel: I'm relatively young, relatively healthy, and if the side effects are manageable, I'd rather be "doing something" than sitting around waiting. For me, to be honest, the chemo may just be postponing the interval until my next recurrence. But that's OK -- if I can buy some time, wait for some new drug cocktails to emerge, that is good.

    I am on maintenance xeloda (the pill) now. Although I have "failed" with previous cocktails involving 5FU, I'm hoping to trick my body this time!

    Good luck to you with the decision-making as well as any further treatment you undertake. These are highly personal decisions.

    Tara

    Wow - 3 times
    Wow Tara,

    I was also originally diagnosed with Stage III rectal cancer. Did you have VATS all three times or open? You're lucky that the margins were clear and that there was no nodal involvement. You're one strong lady. How long will you be on maintenance zeloda?

    Thinking more about my case, because my mediastinal lymph nodes are involved and they couldn't get a clear margin around one of them my "prognosis is worse than if there were no nodes involved".

    Is there anyone who has had treatment for nodal involvement with lung mets?

    Thank you,
    Susan
  • taraHK
    taraHK Member Posts: 1,952 Member
    #10
    califsue said:

    Wow - 3 times
    Wow Tara,

    I was also originally diagnosed with Stage III rectal cancer. Did you have VATS all three times or open? You're lucky that the margins were clear and that there was no nodal involvement. You're one strong lady. How long will you be on maintenance zeloda?

    Thinking more about my case, because my mediastinal lymph nodes are involved and they couldn't get a clear margin around one of them my "prognosis is worse than if there were no nodes involved".

    Is there anyone who has had treatment for nodal involvement with lung mets?

    Thank you,
    Susan

    lung surgery
    I had VATS twice and open twice (I think). One time lobectomy and two times wedge. I was lucky that I had solitary mets each time, and no nodal involvement. Still, there is a limit as to how many times they can hack away at my lungs! I just got back from a walk -- up a long hill -- so they are working!!

    I will be on the xeloda "indefinitely". So far the side effects have been minimal and manageable. Some fatigue and some problems with the skin on my feet (bummer, since I like to walk for exercise). But so far OK.

    Good luck to you!

    Tara

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