Second Opinions Lung mets- specialists - how to help

Aicirtap
Aicirtap Member Posts: 55
edited April 2013 in Colorectal Cancer #1

Hi everyone, 

After all your wonderful responses to my first post, I would like to ask you for advice. 

My partner has coloncancer IV, originally diagnosed with mets to the liver. The most recent full body pet scan showed lesions in the lung, three on the left side, one to two on the right. We are located in europe  and he has been treated in one hospital ever since and was not interested in any second opinions which have been offered to him. They resected the primary and the liver mets and he had two major follow on liver surgeries and various minimal invasive ones where they took out very small lesions in the liver. in every follow on scan so far (he was diagnosed 3 years ago), 1-3 small lesions showed in the liver Which were removed every time. He reacted well to chemo but hasn't had it for a year - they wanted to save it up for "later". 

The treating oncologist wants to schedule open surgery asap and take out the lesions on the left side of the lung which are resectable. In a second step he wants to take out the 1-2 lesions on the right side with an ablation technique  Although resectable, he wants to spare tissue on the right side by doing this. I understand that they don't want to do chemo. The oncologist said that it does not work on liver mets. 

 

Now I have been reading very different things and in particular that the systemic disease needs to be treated which is why follow-on chemo seems logical to me. In addition, I am wondering if one would ever choose ablation over regular surgery, if the latter is possible. I have read that recurrence is (significantly) higher with ablation. In addition, I wonder if open surgery is preferable to VATS, which may allow for quicker recovery. 

Without access to second opinions, which my partner needs to decide on, I retrieve all my information from forums and websites and would be very thankful for any insights on this situation. In light of the fact that this is a US forum, this is probably not the right forum to ask, but if anyone knows about particularly recommended centers in Europe, any hint would also be appreciated. 

Last but not least, how do you feel about me inquiring about this.. I sometimes think I should leave the decisions to my partner and if he chooses to just go for the one opinion of his oncologist then that's his choice. On the other hand I tend to think that he might regret at some point or that something could have done. It is hard to sit still. 

Btw: any survivor stories of colon cancer and lung mets? 

 

Thank you so much!

lost caretaker :-)

Comments

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #2
     Hi, welcome to the board, I

     

    Hi, welcome to the board, I am a former caregiver.  My darling man passed away this past Thanksgiving.

    In response to your question about inquiring about various procedures for your partner, there is nothing wrong with asking questions. You can simply  present the options to your partner and let him decide.   I was the one who did all of the research in our relationship, Rick just didn't want to do it himself.  It depressed him.  But fortunately for me, I found this board and all of the wonderful supportive friends out here.  It's only when you go over that line in the sand that you'll need to hold yourself back. And you'll know when that is, after snaps at you.  So my advice is to try to obtain as much information for him as possible, but it is entirely up to him how he wants to proceed with his options, his treatments and his life.  You need to me mindful and respectful of any and all of his wishes.

    Take care, Cynthia

  • Aicirtap
    Aicirtap Member Posts: 55
    #3
    LivinginNH said:

     Hi, welcome to the board, I

     

    Hi, welcome to the board, I am a former caregiver.  My darling man passed away this past Thanksgiving.

    In response to your question about inquiring about various procedures for your partner, there is nothing wrong with asking questions. You can simply  present the options to your partner and let him decide.   I was the one who did all of the research in our relationship, Rick just didn't want to do it himself.  It depressed him.  But fortunately for me, I found this board and all of the wonderful supportive friends out here.  It's only when you go over that line in the sand that you'll need to hold yourself back. And you'll know when that is, after snaps at you.  So my advice is to try to obtain as much information for him as possible, but it is entirely up to him how he wants to proceed with his options, his treatments and his life.  You need to me mindful and respectful of any and all of his wishes.

    Take care, Cynthia

    Thank you, Cynthia! Yes, I am

    Thank you, Cynthia! Yes, I am trying to be mindful. It used to be more difficult because there seemed to be more aggressive treatment out there which would have been an option as relatives of mine work in this field. he preferred to stay where he was in order to keep his daily routine and miss out as little work days as possible. Now we are at a slightly different place with the change to systemic And I am trying to adjust and find out what options he has. His current doctors want to set up the surgery as soon as possible - it seems like this is a very good thing. It is only nuances that I would like to understand and compare. 

     

    Thanks again Cynthia! I love your reading cat btw :-) 

  • Semira
    Semira Member Posts: 381 Member
    #4
    Aicirtap said:

    Thank you, Cynthia! Yes, I am

    Thank you, Cynthia! Yes, I am trying to be mindful. It used to be more difficult because there seemed to be more aggressive treatment out there which would have been an option as relatives of mine work in this field. he preferred to stay where he was in order to keep his daily routine and miss out as little work days as possible. Now we are at a slightly different place with the change to systemic And I am trying to adjust and find out what options he has. His current doctors want to set up the surgery as soon as possible - it seems like this is a very good thing. It is only nuances that I would like to understand and compare. 

     

    Thanks again Cynthia! I love your reading cat btw :-) 

    Lung Mets

    Hi Pat,

    knowing your partner is also in Germany, perhaps he/you should inquire about Dr. Rolle in Coswig. In different german boards I read about him being the absolut Nr. 1 choice concerning Lung Mets. Perhabs start some research in that direktion.

    All fingers crossed

    Petra

     

  • Aicirtap
    Aicirtap Member Posts: 55
    #5
    Semira said:

    Lung Mets

    Hi Pat,

    knowing your partner is also in Germany, perhaps he/you should inquire about Dr. Rolle in Coswig. In different german boards I read about him being the absolut Nr. 1 choice concerning Lung Mets. Perhabs start some research in that direktion.

    All fingers crossed

    Petra

     

    Petra,
    Thank you so much for

    Petra,

    Thank you so much for this! That's what I will do right now!

    best,

    patricia 

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #6
    Lung Ablations

    I've had successful lung ablations 5 times over the past 6 or so years. Prior to that I had 3 wedge resections to my lung(s) that were also successful.

    i would opt for ablations over surgery any day of the week. I've never read or heard that recurrence was higher for ablations but I don't doubt that there are publications that take both sides. I've noticed that for anything that's published you can find a publication that says otherwise. Some people insist we never landed on the moon and there's a Flat Earth Society in England (everyone knows that the Earth is a triangle! - boy, some people...)

    As far as you inquiring about this, I see nothing wrong with it at all. Ultimately it's your partner's decision but I see no harm in presenting information to him.

    Survivor stories? I was DX in Feb 2004 with Stage IV Colon Cancer. I've been in treatment since day one but my lung mets are presently gone.

    Best wishes to your partner...
    -phil

  • Aicirtap
    Aicirtap Member Posts: 55
    #7
    PhillieG said:

    Lung Ablations

    I've had successful lung ablations 5 times over the past 6 or so years. Prior to that I had 3 wedge resections to my lung(s) that were also successful.

    i would opt for ablations over surgery any day of the week. I've never read or heard that recurrence was higher for ablations but I don't doubt that there are publications that take both sides. I've noticed that for anything that's published you can find a publication that says otherwise. Some people insist we never landed on the moon and there's a Flat Earth Society in England (everyone knows that the Earth is a triangle! - boy, some people...)

    As far as you inquiring about this, I see nothing wrong with it at all. Ultimately it's your partner's decision but I see no harm in presenting information to him.

    Survivor stories? I was DX in Feb 2004 with Stage IV Colon Cancer. I've been in treatment since day one but my lung mets are presently gone.

    Best wishes to your partner...
    -phil

    Phil, what a wonderful story!

    Phil, what a wonderful story! congratulations and thank you for sharing! I will try to see if I can find out about your treatment in previous posts.. 

     

    Are there more stories like out here?

    on the ablation - would you always prefer it in order to save tissue?

    thank you again and best!

    patricia

  • AnnLouise
    AnnLouise Member Posts: 276 Member
    #8
    Aicirtap said:

    Phil, what a wonderful story!

    Phil, what a wonderful story! congratulations and thank you for sharing! I will try to see if I can find out about your treatment in previous posts.. 

     

    Are there more stories like out here?

    on the ablation - would you always prefer it in order to save tissue?

    thank you again and best!

    patricia

    SBRT radiation....

    is another alternative that I just had on a lung met. RFA was not an option because the met was on the blood vessel. My lung met was 1.2 cm. and haven't had a CT yet to know the results. Just another experience to draw from.....best to both of you ~ Ann

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #9
    Aicirtap said:

    Phil, what a wonderful story!

    Phil, what a wonderful story! congratulations and thank you for sharing! I will try to see if I can find out about your treatment in previous posts.. 

     

    Are there more stories like out here?

    on the ablation - would you always prefer it in order to save tissue?

    thank you again and best!

    patricia

    Hi Patricia

    It wasn't so much to save tissue as much as the tumor was in the right place. With almost any tumor, treating it is like real estate: location, location, location! Another reason I prefer the ablation is that 4 out of the 5 that I've had done allowed me to go home the same day. The first one I had done I stayed overnight for observation. For me, lung operations and my colon/liver operations all required a hospital stay of anywhere between 7-16 days.

     

  • Aicirtap
    Aicirtap Member Posts: 55
    #10
    AnnLouise said:

    SBRT radiation....

    is another alternative that I just had on a lung met. RFA was not an option because the met was on the blood vessel. My lung met was 1.2 cm. and haven't had a CT yet to know the results. Just another experience to draw from.....best to both of you ~ Ann

    Thank you, Ann. He will have

    Thank you, Ann. He will have open surgery on one side next week and most likely ablation on the other side of the lung later on. It is very encouraging to read good stories, there seems to be a lot less formation out there compared to (only) liver mets. 

     

  • Aicirtap
    Aicirtap Member Posts: 55
    #11
    PhillieG said:

    Hi Patricia

    It wasn't so much to save tissue as much as the tumor was in the right place. With almost any tumor, treating it is like real estate: location, location, location! Another reason I prefer the ablation is that 4 out of the 5 that I've had done allowed me to go home the same day. The first one I had done I stayed overnight for observation. For me, lung operations and my colon/liver operations all required a hospital stay of anywhere between 7-16 days.

     

    Yes, that's what he heard

    Yes, that's what he heard from the doctors too. roundabout 12 days in the hospital. How did you heal from the lung surgery - I know it is different for everybody but just to get a feel. 

    thank you for sharing! 

  • YoVita
    YoVita Member Posts: 590 Member
    #12
    Just one comment I want to make

    I had a single lung nodule appear 2 and a half years after my initial diagnosis.  My oncologist and I both agreed that it should be removed surgically (I was able to have VATS) so it could be identified as either a met of my original rectal cancer or a new primary lung cancer.  A biopsy alone was not recommended.  Now that the biopsy/surgery has been done and my lung nodule was confirmed as a met from my original CRC, if another lung nodule appears, I would try to have RFA if possible.  Lung surgery is scary - mostly psychological. However, it was nowhere close to the physical challenge and discomfort of my original surgery.  Hope this helps.

  • Aicirtap
    Aicirtap Member Posts: 55
    #13
    YoVita said:

    Just one comment I want to make

    I had a single lung nodule appear 2 and a half years after my initial diagnosis.  My oncologist and I both agreed that it should be removed surgically (I was able to have VATS) so it could be identified as either a met of my original rectal cancer or a new primary lung cancer.  A biopsy alone was not recommended.  Now that the biopsy/surgery has been done and my lung nodule was confirmed as a met from my original CRC, if another lung nodule appears, I would try to have RFA if possible.  Lung surgery is scary - mostly psychological. However, it was nowhere close to the physical challenge and discomfort of my original surgery.  Hope this helps.

    Yes, this helps a lot. Thank

    Yes, this helps a lot. Thank you for sharing. It's hard to imagine what people are going through even if you are close to someone who is. Thank you to everyone for taking the time. It is very comforting to read all your replies. Surgery is probably Tuesday but not VATs. I will keep you posted. 

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