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My husband was diagnosed mid-July with adenoid cystic carcinoma in his lung.  It is the primary site, and his PET scan and brain MRI were clear.  He has no symptoms other than a cough.  We will be heading to Rochester, MN next week where Dr. Mark Allen will perform a lobectomy, or possibly remove the entire lung.  The tumor is 5.5 cm and is in the upper left lobe.  This disease is all new to us, and we have seen very little about primary lung ACC.  Has anyone had experience with this type of diagnosis or with the Mayo Clinic?  My husband is 67 years old and in otherwise excellent health, has never smoked, and has no other conditions.  We'd be grateful to anyone willing to share their experience/knowledge with us.  Thank you.  

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Hi Marybelle.  I don't have any experience or knowledge of this cancer and i can't recall any postings here about it. i just want to say welcome here. Best of luck to both of you. 

Bridget O

 

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Hello Marybelle.  I have had lung cancer, my husband did,  I am a nurse and cared for people with lung cancer but----

that's new to me.  I googled it and sure enough it can be a primary tumor in the lung.  Also the sites said it is very rare.

I am so glad you are going to Rochester, MN.  There are great Doctors there.  Are you going to a Mayo Clinic affiliate ?  They have 

a great hospital and do great research.  Let us know how it goes with your husband.  

Donna G

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Hi marybelle.  I had a right upper lobe lobectomy six months ago.  The surgery was not as bad as I envisioned and I’ve made a full recovery.  If you or your husband  have any questions about the surgery feel free to ask.  

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On 8/8/2019 at 8:50 AM, BridgetO said:

Hi Marybelle.  I don't have any experience or knowledge of this cancer and i can't recall any postings here about it. i just want to say welcome here. Best of luck to both of you. 

Bridget O

 

Thanks, Bridget.  Appreciated!

 

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On 8/8/2019 at 3:58 PM, Donna G said:

Hello Marybelle.  I have had lung cancer, my husband did,  I am a nurse and cared for people with lung cancer but----

that's new to me.  I googled it and sure enough it can be a primary tumor in the lung.  Also the sites said it is very rare.

I am so glad you are going to Rochester, MN.  There are great Doctors there.  Are you going to a Mayo Clinic affiliate ?  They have 

a great hospital and do great research.  Let us know how it goes with your husband.  

Donna G

 

On 8/8/2019 at 3:58 PM, Donna G said:

Hello Marybelle.  I have had lung cancer, my husband did,  I am a nurse and cared for people with lung cancer but----

that's new to me.  I googled it and sure enough it can be a primary tumor in the lung.  Also the sites said it is very rare.

I am so glad you are going to Rochester, MN.  There are great Doctors there.  Are you going to a Mayo Clinic affiliate ?  They have 

a great hospital and do great research.  Let us know how it goes with your husband.  

Donna G

Thanks, Donna.  Wow, that's amazing it hasn't come up on this site before.  I was told there were only 47 cases diagnosed last year in the US.  We've already had our consultation at Mayo and the surgery is this Wednesday at St. Mary's in Rochester.  We're grateful to have someone who has experience with primary ACC in the lung. A whole new world to us, and things have happened quickly.  Will report back later in the month...

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14 hours ago, Curt said:

Hi marybelle.  I had a right upper lobe lobectomy six months ago.  The surgery was not as bad as I envisioned and I’ve made a full recovery.  If you or your husband  have any questions about the surgery feel free to ask.  

That's really good to hear, Curt.  It's really encouraging to us.  So happy it went well.  

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Hi Marybelle:    Welcome to the site!  You will find invaluable support here.  Since April 2019 I have been getting treatment at Mayo Clinic, Rochester, MN, for my stage IV lung ca with brain metastasis.   I also worked there for 25 years.  

You should be given a business card from any doctor, physician assistant, etc, that is involved in your husband's surgery.  If they don't offer one, ask for it and keep these in a safe place.  The Mayo complex is very large; I assume your husband's surgery will take place at St Marys Hospital.

Please contact me via e-mail if you need any assistance.  I'd be happy to assist in any way.

You both take care now...  Susan Rae

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Hi Marybelle,

I had a lobectomy (lower right lung) last May 2nd and, like Curt, found the surgery to go pretty well and the recovery is tough for a week or so and then begins to get better. With everything else being clear it may be that the surgery is all that is needed.  I'm not familiar enough with ACC to know if a secondary phase of treatment is necessary.  There are a number of posts here and in other forum sections where I and others layout what happened with our surgery and recovery.  But please feel free to ask whatever questions you have and we'll be happy to answer.

Lou

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