BALDWIN, you need to start your own thread...post

Nana b
Nana b Member Posts: 3,030 Member
edited March 2014 in Colorectal Cancer #1
COPIED from another post.......


Hi, I am new to this. My
new

Hi,
I am new to this. My husband has stage 4 colon cancer. He was first diagnosed in October 2007 with stage 3. Cancer then spread to liver and lungs. He had two spots removed from lung, went back on chemo w/avastin and then on Dec 31st 2009 he had a liver resection and we were told he was cancer free. CT scan last week shows no evidence of recurrence on liver, but there are multiple new and increasing lung nodules and a new small right pleural effusion. We have an appointment with the onc this Friday and to say that we are both devasted and in deep depression is an understatement. The surgeon and onc at Mass General have sent us back to the referring onc and crazy things are running through my mind as to why. I don't want to give up hope, but right now, we are really struggling. Don't know what to do.

Comments

  • baldwin
    baldwin Member Posts: 25
    Thank you for the advice. As
    Thank you for the advice. As I said, I am new and still learning to navigate the site. Again thanks.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Hi Baldwin
    Thanks for helping Baldwin, Nana:)

    Hi Baldwin

    Nice to meet you. It's always hard to know what to do. You gear your mind one way and then something else comes up and we can all get thrown for a loop - our minds racing all over trying to figure it all out and what it all means. We all certainly understand what you are feeling right now.

    As for what to do...right now it sounds like your plan is good - see the onc and see what information they have for you.

    It's possible based on the CT, that they might recommend a PET, which would test to see whether any of those lung nodules "light up" and show any signs of cancer activity.

    6-months ago, I had 2 tumors in the pleura of my lung. All tests indicated cancer acitivy in those tumors. So we did the DaVinci surgery and took them out. Biopsies revealed that these were benign, but they were tumors that were continuing to grow, so they needed to come out.

    And now, I've got a new tumor in the pleura but further down. My CEAs rose slightly...while it may be nothing, it's always a concern to see something present when you think it's behind you. I really do understand how you're feeling right now.

    And hopefully, along with a CT and/or PET, they would also order bloodwork, so the CEA level and other blood info could be evaluated to see how that looks. Those 3 things would give the onc a better idea of where you actually are.

    They could also request a needle biopsy if the spots were big enough for a sample.

    They could wait and watch and do another CT in a month or two and check the rate of growth there as well.

    The multiple mets you speak about would have me concerned too. I know they say that everyone of us has some scarring and some granulomas in our lung - we watch those and if nothing happens, then they are considered normal.

    But in your case, I'm hoping that the onc would consider a PET and then make a decision on whether another surgery is in order, or whether they think they want to re-introduce chemo.

    However, I have read that chemo is not very effective on lung tumors - I found an article about this on the American Cancer Society that you might like to read. I'm posting the link here for you:

    http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Chemotherapy_56.asp?sitearea=

    RFA can be done on the lungs and along with traditional thoracis surgery, the DaVinci Robot surgery can be done as well.

    I'm facing a similar situation again right now, so I really sympathize with the hard decisions that will need to be made.

    I'm here with you though...you will not walk alone. Let's just see what the onc comes back with his diagnosis and gameplan. You can post that and we'll see what's the next step.

    And, it's never a bad idea to get another opinion after you talk to your onc - good idea to talk with a thorasic surgeon as well - they would be doing the surgery.

    This way, you could get a better feel of what you're being advised on and you can compare apples to oranges and see if it all adds up to you.

    I'll be looking forward to a reply on what you find out.

    Until then...a deep breath...go ahead and take another one!

    I know you are both feeling overwhelmed and stressed out beyond measure! I've been going at this for SIX years, so I understand how the battle wears on...and wears you out too. Be down for a day or 2, then just find something that you normally do and try not to put the "cart before the horse." If it's there, it's going to be there, so a day or 2 won't make the difference in the big picture. But by doing something you enjoy, you thumb your nose at cancer and you will get a sense of control at doing something you enjoy, instead of letting the threat of cancer or another surgery, suck the joy out of you. We can't let that happen:)

    Stay strong, stay positive, and be your own advocate - don't be afraid to pull the trigger if you feel you're not getting good advice or care from your current facility. It can change your life for the better. I moved away from my old practice to a teaching hospital and was the 1st person in North Texas to do the DaVinci surgery on the lung. So, that surgeon now has his certification to do it for others that come behind me. So, it's available in Texas now, but may also be in your part of the country as well.

    All the best!
    -Craig
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    baldwin said:

    Thank you for the advice. As
    Thank you for the advice. As I said, I am new and still learning to navigate the site. Again thanks.

    Hi Baldwin!
    I wanted to let you know that I did answer you under the other thread, in case you didn't know. I am not sure how to move it here, so I thought I would alert you to the other thread.

    Take good care!
  • baldwin
    baldwin Member Posts: 25
    AnneCan said:

    Hi Baldwin!
    I wanted to let you know that I did answer you under the other thread, in case you didn't know. I am not sure how to move it here, so I thought I would alert you to the other thread.

    Take good care!

    Thank you. I sincerely
    Thank you. I sincerely appreciate the support and encouragement. I am very weepy again today and hope to get it together before my husband gets home. God Bless and thank you.
  • baldwin
    baldwin Member Posts: 25
    Sundanceh said:

    Hi Baldwin
    Thanks for helping Baldwin, Nana:)

    Hi Baldwin

    Nice to meet you. It's always hard to know what to do. You gear your mind one way and then something else comes up and we can all get thrown for a loop - our minds racing all over trying to figure it all out and what it all means. We all certainly understand what you are feeling right now.

    As for what to do...right now it sounds like your plan is good - see the onc and see what information they have for you.

    It's possible based on the CT, that they might recommend a PET, which would test to see whether any of those lung nodules "light up" and show any signs of cancer activity.

    6-months ago, I had 2 tumors in the pleura of my lung. All tests indicated cancer acitivy in those tumors. So we did the DaVinci surgery and took them out. Biopsies revealed that these were benign, but they were tumors that were continuing to grow, so they needed to come out.

    And now, I've got a new tumor in the pleura but further down. My CEAs rose slightly...while it may be nothing, it's always a concern to see something present when you think it's behind you. I really do understand how you're feeling right now.

    And hopefully, along with a CT and/or PET, they would also order bloodwork, so the CEA level and other blood info could be evaluated to see how that looks. Those 3 things would give the onc a better idea of where you actually are.

    They could also request a needle biopsy if the spots were big enough for a sample.

    They could wait and watch and do another CT in a month or two and check the rate of growth there as well.

    The multiple mets you speak about would have me concerned too. I know they say that everyone of us has some scarring and some granulomas in our lung - we watch those and if nothing happens, then they are considered normal.

    But in your case, I'm hoping that the onc would consider a PET and then make a decision on whether another surgery is in order, or whether they think they want to re-introduce chemo.

    However, I have read that chemo is not very effective on lung tumors - I found an article about this on the American Cancer Society that you might like to read. I'm posting the link here for you:

    http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Chemotherapy_56.asp?sitearea=

    RFA can be done on the lungs and along with traditional thoracis surgery, the DaVinci Robot surgery can be done as well.

    I'm facing a similar situation again right now, so I really sympathize with the hard decisions that will need to be made.

    I'm here with you though...you will not walk alone. Let's just see what the onc comes back with his diagnosis and gameplan. You can post that and we'll see what's the next step.

    And, it's never a bad idea to get another opinion after you talk to your onc - good idea to talk with a thorasic surgeon as well - they would be doing the surgery.

    This way, you could get a better feel of what you're being advised on and you can compare apples to oranges and see if it all adds up to you.

    I'll be looking forward to a reply on what you find out.

    Until then...a deep breath...go ahead and take another one!

    I know you are both feeling overwhelmed and stressed out beyond measure! I've been going at this for SIX years, so I understand how the battle wears on...and wears you out too. Be down for a day or 2, then just find something that you normally do and try not to put the "cart before the horse." If it's there, it's going to be there, so a day or 2 won't make the difference in the big picture. But by doing something you enjoy, you thumb your nose at cancer and you will get a sense of control at doing something you enjoy, instead of letting the threat of cancer or another surgery, suck the joy out of you. We can't let that happen:)

    Stay strong, stay positive, and be your own advocate - don't be afraid to pull the trigger if you feel you're not getting good advice or care from your current facility. It can change your life for the better. I moved away from my old practice to a teaching hospital and was the 1st person in North Texas to do the DaVinci surgery on the lung. So, that surgeon now has his certification to do it for others that come behind me. So, it's available in Texas now, but may also be in your part of the country as well.

    All the best!
    -Craig

    Craig,
    Thank you so much for

    Craig,
    Thank you so much for responding. I will definitely let everyone know what the onc has to say tomorrow. Until then, reading your post is giving me strength. I am very weepy and I am trying to hold it together and want you to know, that your taking the time to explain the situation that you are faced with that seems very similar to my husband's is helping me understand things a little better and reinforcing to fight and never give up or give in. God Bless you and thank you so much.