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Another from the H/N group

katenorwood
Posts: 1812
Joined: May 2012

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

dennycee
Posts: 647
Joined: Mar 2011

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.

katenorwood
Posts: 1812
Joined: May 2012

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
Posts: 647
Joined: Mar 2011

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
Posts: 1812
Joined: May 2012

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

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

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
Posts: 1812
Joined: May 2012

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's picture
denistd
Posts: 488
Joined: Apr 2009

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
Posts: 1812
Joined: May 2012

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

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