Another from the H/N group

katenorwood
katenorwood Member Posts: 1,912
Hey there !
Been reading some posts from you, and guessing I'm ready to post. I have adenoid cystic carcinoma. Was post surgery and rads almost a yr...and recently told this is back. I'm pretty sure I had lung mets before, but with a clinic that wasn't knowlegable with ACC. I am now with a great group of drs. that have the info and knowledge to get me through this. I know what my options are....a little depressing, but it is what it is. I am looking at surgery to remove a portion of my left lung to help I'm guessing with quality of life, breathing and functioning. I wanted to introduce myself...and to let you know I'll be a part of this group and the H/N gang. Katie

Comments

  • dennycee
    dennycee Member Posts: 842
    Hi Katie and welcome to the
    Hi Katie and welcome to the LC board.
    If they are considering removing part of the lung that is awesome. They can do it via a video-assisted thoracotomy surgery (VATS). They make much smaller incisions and can do a lobectomy that way. Recovery time is days rather than months. It is rare, though, to remove a lung cancer mets so I really don't know how that would work for ACC.

    Have they done a biopsy to confirm the mass is ACC? I look forward to learning more.
  • ToBeGolden
    ToBeGolden Member Posts: 695
    I'm Here Too
    But you probably already know that I hang out on this board too. My father had part of his lung removed for lung cancer and survived many years. I won't know whether I have metastasis to the lung for a couple of weeks. Hope you receive a highly successful treatment. I hope there are many enjoyable events in both of our lives. Rick.
  • katenorwood
    katenorwood Member Posts: 1,912
    dennycee said:

    Hi Katie and welcome to the
    Hi Katie and welcome to the LC board.
    If they are considering removing part of the lung that is awesome. They can do it via a video-assisted thoracotomy surgery (VATS). They make much smaller incisions and can do a lobectomy that way. Recovery time is days rather than months. It is rare, though, to remove a lung cancer mets so I really don't know how that would work for ACC.

    Have they done a biopsy to confirm the mass is ACC? I look forward to learning more.

    They say no biopsy
    Hello dennycee,
    I have to meet with the thorasic specialist this week. I asked the tumor board nurses why no biopsy first...they both told me that they want to move on this quickly as it appears to be growing quickly. I intend on asking this question too...but saying this ACC tends to met to the lung most commonly. Yes it could be another primary. All I know is what they've told me so far. When you say that it is uncommon for mets to have surgery done, why is this ? I defineately understand the reasoning for ACC...as it doesn't stop it. But usually ACC grows very slowly and you can go for years before it advances. There is so much to consider and understand. Please everyone continue to advise me as I post ! Thank you ! Katie
  • dennycee
    dennycee Member Posts: 842

    They say no biopsy
    Hello dennycee,
    I have to meet with the thorasic specialist this week. I asked the tumor board nurses why no biopsy first...they both told me that they want to move on this quickly as it appears to be growing quickly. I intend on asking this question too...but saying this ACC tends to met to the lung most commonly. Yes it could be another primary. All I know is what they've told me so far. When you say that it is uncommon for mets to have surgery done, why is this ? I defineately understand the reasoning for ACC...as it doesn't stop it. But usually ACC grows very slowly and you can go for years before it advances. There is so much to consider and understand. Please everyone continue to advise me as I post ! Thank you ! Katie

    ACC cancer mets.
    Hi Katie! I just don't know how they treat mets from ACC. With lung cancer, the attitude is- well it's metasticized so its stage four no surgery because it probably already be in many places. In general, with lung cancer, it is extremely rare for them to operate after mets. When they do a resection or lobectomy it is on patients at lower disease stages. They are aggressively going for a cure. So surgery for the LC patient is a great thing.
  • katenorwood
    katenorwood Member Posts: 1,912
    dennycee said:

    ACC cancer mets.
    Hi Katie! I just don't know how they treat mets from ACC. With lung cancer, the attitude is- well it's metasticized so its stage four no surgery because it probably already be in many places. In general, with lung cancer, it is extremely rare for them to operate after mets. When they do a resection or lobectomy it is on patients at lower disease stages. They are aggressively going for a cure. So surgery for the LC patient is a great thing.

    Thank you !
    dennycee,
    I go in on the 27th to talk things over with the specialist. With ACC I have found out they can remove bigger tumors to improve quality of life. I'm sure I will get different options. When I got the confirmation call today...it hit, this is real...I'm not in denial....just hitting home a bit more. Thanks for the info ! I'm sure I'll have more questions as I go. Katie
  • katenorwood
    katenorwood Member Posts: 1,912

    I'm Here Too
    But you probably already know that I hang out on this board too. My father had part of his lung removed for lung cancer and survived many years. I won't know whether I have metastasis to the lung for a couple of weeks. Hope you receive a highly successful treatment. I hope there are many enjoyable events in both of our lives. Rick.

    Well dang.....
    Hey Rick,
    I'm staying positive on this one. What else can you do right ? I may have other options than surgery if they confirm this is ACC...but I won't be meeting with them til the 27th. All I know is that it is growing and needs to be gone ! I will be praying extra hard for you Rick that this is'nt a cancer in the lung for you ! But if it is we can pull each other and others through it right ? We will have better days ahead ! Katie
  • denistd
    denistd Member Posts: 597

    Well dang.....
    Hey Rick,
    I'm staying positive on this one. What else can you do right ? I may have other options than surgery if they confirm this is ACC...but I won't be meeting with them til the 27th. All I know is that it is growing and needs to be gone ! I will be praying extra hard for you Rick that this is'nt a cancer in the lung for you ! But if it is we can pull each other and others through it right ? We will have better days ahead ! Katie

    H/N
    Hi Katie, going though all of this sucks doesn, Just spent a torturous 3 weeks in the hospital, have just posted on the H and N board, you might take a look. Denis
  • katenorwood
    katenorwood Member Posts: 1,912
    denistd said:

    H/N
    Hi Katie, going though all of this sucks doesn, Just spent a torturous 3 weeks in the hospital, have just posted on the H and N board, you might take a look. Denis

    Yeah found you !
    Denis,
    You're right it does absolutely stink ! You've had a tough pull of it my friend. But saying this you've given me the courage to continue the good fight ! I'm not real good at waiting, and this rotten dx is interfering once again with the family time I was so looking forward to. Buck up time for me and only positives...wishing you the same Denis ! Katie