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Recently Diagnosed with Adenoid Cystic Carcinoma of the Lung


Heatherc369

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I'm a 37 year old mother of 1 living in Florida. I have had a cough since August 2017. I ignored it for a long time, got antibiotics once, steroids another time..then was told I have silent reflux and was prescribed protonix. This made sense kind of since chest xray looked good and the fact i have ulcerative colitis. On Saturday Nov 17th I felt horrible. The whole week leading up to this I was coughing and wheezing so bad it scared the crap out of me. I could not believe the noises coming out of me. It kept me up at night because it was so loud and it scared me. I figured it was because I have smoked on and off for the better part of 20 years. But anyways  on Saturday Nov. 17 2018,  I worked half day, feeling worse by the hour, by the time I got home I just told my fiance , I need a nap and if I don't feel better we are going to the ER tonight. (For me to say this he knew it was bad because I NEVER go to the doctor unless forced , let alone the ER) To make a longer story a little less long, I was told I had pneumonia and they would give me antibiotics and let me go home.  Before they would let me go they said I had to walk around the hall with the oxygen thing on my finger, well my oxygen got as low as 84 but stayed at 88 most of the time. Needless to say they admitted me....for 9 days! Multiple CT scans, MRI'S , blood draws, xrays and 2 bronchoscopies later...I was diagnosed with adenoid cystic carcinoma of the lung. The small tumor is located on the lower left lobe of my lung. Even though results kept coming back saying something about the salivary glands, they just don't see it. I went for a PET scan and PFT on Thursday Dec. 13th then I have an echocardiogram the 17th and and the thoracic surgeon the 18th. My oncologist says he's pretty confident that having a robotic lobectomy will be all I need. I've been trying to trust him, but this week has been rough. All of a sudden all of the what ifs are getting to me. Reality of surgery is getting to me. The hours and hours of phone calls everyday , getting nothing accomplished...feeling so defeated! Only a few people know what is going on because I don't want pity, or to be treated differently but at the same time I feel I need to talk about it! But so many things are starting to make sense now....no wonder I've been coughing and wheezing and getting so easily tired and short of breath....my frickin lung was collapsed for god knows how long.....as the docs keep saying....the pneumonia was a blessing in disguise. **Sorry for for rambling and thanks for letting me share** 💕

 

If anyone has any experience with ACCL or robotic lobectomies I would love to hear your stories!

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Heather,

Welcome here.  Adenoid cystic carcinoma, a form of adenocarcinoma, normally is found in the salivary glands.  Indeed you've had a lot of testing thus far but I don't see any reference to a biopsy. I do hope the PET scan result shows only the tumor in your lower left lung as a point of concern.

If confined to your lower left lung, your pneumonia was indeed a blessing in disguise.  There are many here who can describe their experience with robotic lobectomies or VATS procedures.  My treatment required full pneumonectomy, a complete removal of my right lung, and I've survived and lived well for nearly 15 years since my diagnosis with non small cell lung cancer (NSCLC).  Surgery with an early discovery is the best treatment for lung cancer.  So I do hope the PET results indicate a surgical procedure as the best treatment.

Don't worry about rambling.  We've all been there and done that.  I'm sure folks with VATS will be describing their experience so you can have an idea of what to expect.  In the mean time...

Stay the course.

Tom

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Hi, Heather, and welcome.  I'm sorry for all you've been through and that it's brought you here--OTOH, I'm glad you're here and that you're now in the process of getting the treatment you need.

I had VATS, which is almost exactly like robotic surgery, minus the robot.  My surgeon said both are pretty much the same.  He prefers VATS; his colleague prefers robotic.  For them, it was a function of which worked better for them (as well as the availability of the robotic surgical room).  

You will have three VERY small incisions, which will make your recovery MUCH faster (and less painful) than the traditional "open" surgery.  My surgeon cautioned me that if something unexpected happened (e.g., uncontrolled bleeding) it might be necessary to convert to the "open" incision, but that he didn't expect any problems.

I could have gone home the next day but opted to stay in one more night since I live alone.  And I DID wind up with a minor post-surgical complication (crepitus--aka subcutaneous emphysema--which is air that gets under the skin from an air leak) that landed me back in for just a few additional days (so I could be properly "deflated" with a chest tube).  After that, my recovery was very fast.  I was out with friends a week or so after my last discharge from the hospital and back to work right after that (desk job).  

A foam wedge pillow will help you sleep more comfortably right after surgery.  You will be given breathing exercises to do and it's important you do them faithfully.  You can expect a lot of coughing for a couple of weeks--I had sore abs from coughing.  But then that cleared up pretty fast, too.

I had surgery a year and a half ago and have no long-term effects.  I needed no chemo or radiation, just semi-annual scans to make sure everything remains good.

Feel free to ask any questions--that's what we're here for.

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HI Heather,  I second everything LexiCat says. I had VATs surgery 2 years  ago and was discharged the day after surgery  with a chest tube in place.  Otherwise my air leak would probably have caused me to inflate the same way LexiCat's did. Not everybody has thes persistent air leaks, fortunately, but they're more of a nuisance than anything. The tube was in place for about 10 days. I was  able to be up and around during that time. Once the tube was out i had very little pain and my recovery was pretty fast and easy. I didn't need any treatment beyond surgery. I have regular CT scans to watch for recurrence. So far, none.

I didn't go through all the stuff you went through to get diagnosed- my nodule was discovered in a routine CT for something else and I had no symptoms.  I'm sorry to hear about the long and difficult road to your diagnosis. I hope it will all be easier from here on. Feel free to ask questions, vent, ramble, whatever you need to do. Let us know how we can support you.

Bridget O

 

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Hi Heather

I’m really sorry you’ve had such a tough go in order to get to this point.  No one would be thinking about cancer in a 37 year old.  Many of us went through a similar path of misdiagnosis (including acid reflux).  It happened to me too.

I certainly understand and respect your decision to keep your circle small with regard to who you share your diagnosis with.  I want to let you know I felt exactly the same way. I was a healthcare executive in a very small field. I was worried my career would be destroyed if people found out I had Stage IV LC through the rumor mill.  Then I got some advice from one of the nurses recommending I create a broad circle of support.  So I reversed course and told many people.  

There have been some really tough days and support came from the least expected places.It pulled me through the despair in the early diagnosis days.  I thought I would share my experience with you. 

You landed in the right place. This is a group of survivors who are committed to building our resilience. 

Michelle

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12 hours ago, Tom Galli said:

Heather,

Welcome here.  Adenoid cystic carcinoma, a form of adenocarcinoma, normally is found in the salivary glands.  Indeed you've had a lot of testing thus far but I don't see any reference to a biopsy. I do hope the PET scan result shows only the tumor in your lower left lung as a point of concern.

If confined to your lower left lung, your pneumonia was indeed a blessing in disguise.  There are many here who can describe their experience with robotic lobectomies or VATS procedures.  My treatment required full pneumonectomy, a complete removal of my right lung, and I've survived and lived well for nearly 15 years since my diagnosis with non small cell lung cancer (NSCLC).  Surgery with an early discovery is the best treatment for lung cancer.  So I do hope the PET results indicate a surgical procedure as the best treatment.

Don't worry about rambling.  We've all been there and done that.  I'm sure folks with VATS will be describing their experience so you can have an idea of what to expect.  In the mean time...

Stay the course.

Tom

Hi Tom! I had a biopsy done during each bronchoscopy. First was inconclusive but during that one they went in and cleaned out my lung and just did a normal biopsy, but the second time they said they did a more aggressive biopsy and finally got some answers. I'm hoping thats the only place it is, there's not much literature on ACC, and even less on ACC primarily in the lung ..but from what I have read its known to spread to the liver from the lung so I have some anxiety about it for sure.

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10 hours ago, LexieCat said:

Hi, Heather, and welcome.  I'm sorry for all you've been through and that it's brought you here--OTOH, I'm glad you're here and that you're now in the process of getting the treatment you need.

I had VATS, which is almost exactly like robotic surgery, minus the robot.  My surgeon said both are pretty much the same.  He prefers VATS; his colleague prefers robotic.  For them, it was a function of which worked better for them (as well as the availability of the robotic surgical room).  

You will have three VERY small incisions, which will make your recovery MUCH faster (and less painful) than the traditional "open" surgery.  My surgeon cautioned me that if something unexpected happened (e.g., uncontrolled bleeding) it might be necessary to convert to the "open" incision, but that he didn't expect any problems.

I could have gone home the next day but opted to stay in one more night since I live alone.  And I DID wind up with a minor post-surgical complication (crepitus--aka subcutaneous emphysema--which is air that gets under the skin from an air leak) that landed me back in for just a few additional days (so I could be properly "deflated" with a chest tube).  After that, my recovery was very fast.  I was out with friends a week or so after my last discharge from the hospital and back to work right after that (desk job).  

A foam wedge pillow will help you sleep more comfortably right after surgery.  You will be given breathing exercises to do and it's important you do them faithfully.  You can expect a lot of coughing for a couple of weeks--I had sore abs from coughing.  But then that cleared up pretty fast, too.

I had surgery a year and a half ago and have no long-term effects.  I needed no chemo or radiation, just semi-annual scans to make sure everything remains good.

Feel free to ask any questions--that's what we're here for.

Hi Lexie! I cannot believe you could have gone home the next day? That blows my mind! Did you go home with a chest tube? That's the part I'm scared of the most.

About the coughing.....I'm so sick of coughing! It's been going on so long I feel like I've built up scar tissue in my esophagus and my abs and ribs have been sore for what seems like forever! I sure hope it won't be much worse :(

That's great news you didn't have to do chemo or radiation! I'm hoping for the same results! 

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9 hours ago, BridgetO said:

HI Heather,  I second everything LexiCat says. I had VATs surgery 2 years  ago and was discharged the day after surgery  with a chest tube in place.  Otherwise my air leak would probably have caused me to inflate the same way LexiCat's did. Not everybody has thes persistent air leaks, fortunately, but they're more of a nuisance than anything. The tube was in place for about 10 days. I was  able to be up and around during that time. Once the tube was out i had very little pain and my recovery was pretty fast and easy. I didn't need any treatment beyond surgery. I have regular CT scans to watch for recurrence. So far, none.

I didn't go through all the stuff you went through to get diagnosed- my nodule was discovered in a routine CT for something else and I had no symptoms.  I'm sorry to hear about the long and difficult road to your diagnosis. I hope it will all be easier from here on. Feel free to ask questions, vent, ramble, whatever you need to do. Let us know how we can support you.

Bridget O

 

Hi Bridget! Eww the dreaded word CHEST TUBE! I watch so many medical shows I hear that word and I cringe! I cannot believe you went home with it! I'm so scared of that part :(

I am so happy to hear you haven't had any reocurrance!

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9 hours ago, Rower Michelle said:

Hi Heather

I’m really sorry you’ve had such a tough go in order to get to this point.  No one would be thinking about cancer in a 37 year old.  Many of us went through a similar path of misdiagnosis (including acid reflux).  It happened to me too.

I certainly understand and respect your decision to keep your circle small with regard to who you share your diagnosis with.  I want to let you know I felt exactly the same way. I was a healthcare executive in a very small field. I was worried my career would be destroyed if people found out I had Stage IV LC through the rumor mill.  Then I got some advice from one of the nurses recommending I create a broad circle of support.  So I reversed course and told many people.  

There have been some really tough days and support came from the least expected places.It pulled me through the despair in the early diagnosis days.  I thought I would share my experience with you. 

You landed in the right place. This is a group of survivors who are committed to building our resilience. 

Michelle

Hi Michelle! I never in my life thought I would go to the hospital with pneumonia and leave the hospital with a cancer diagnosis....it's still all so surreal to me.

I have been told that putting up a wall isn't good and if I put it out there I will get the support i need which is important. I think part of me wants to wait until after the surgery and then maybe be more open about it. I haven't decided yet. 

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Hi again, Heather! The chest tube seems like not a lot compared with what thou've already gone through. For VATS and robotic lobectomy, typically recovery is pretty fast. You will undoubtedly have the dreaded CHEST TUBE, at least while you're in the hospital. Some hospitals keep people in until the tube is out, but I'm glad mine didn't. I was happy to be home and not exposed to all those hospital germs. If you should end up going home with one, I can give  you some tips on tube management. (For example, you can go out wearing a big coat  to cover it all up and you may look like a flasher but no one will know about the tube.)   I approach all  these medical things with curiousity.  It's a place I haven't been before. I wouldn't have chosen to go there, but there I am, so what can I see and what can I learn from it all. And what stories can I tell afterwards? Sometimes it seems like going to another planet (involuntarily- like being kidnapped by alien beings),  Hang in there.

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And I second Bridget.  The tube is NOT a big deal.  You'll hardly know it's there, except you'll have to be careful not to tug on it and you'll have to drain it occasionally.  I was sent home with one the second time (it was removed when I went for my followup).  And I do wish I'd had one the first time, but they expected the crepitus to resolve on its own.  It didn't, and kept getting worse, so I had to go back in to have one inserted and get back to non-puffy.  Crepitus isn't dangerous, but it's pretty uncomfortable.  My doctor didn't want me to drive till the tube was out, but the day it was removed I was OK'd to drive.

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I had VATS...robotic surgery in February at M D Anderson, Houston.  Surgery on a Friday....released on Sunday. Tube located below right ribs removed before I left hospital. On the white board across from hospital bed were main goals....pain control #1. I was up and walking day of surgery and doing breathing exercises.  Sending hugs and prayers.

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