Carcinoid Lung Cancer

cookemi

I was recently diagnosed with Carcinoid Lung Cancer after going into the doctors with symptoms of extreme shortness of breath and fatigue. After an X-ray showed a "mass" in my lower, right lung, I received a ct scan and a lung biopsy to confirm that the mass was indeed cancer. (5.5 X 5.7 cm) I am only 24, a non-smoker, and until 2 months ago when I began having breathing issues, I was also very active. I have met with my pulmonologist several times who says I am going to need surgery (soon). I have yet to meet with my surgeon in person, although an appointment is scheduled. 

Has anyone had a similar experience? Cancer wasn't even a spec on my radar when I first started having symptoms and now I am a nervous wreck -the anticipation of surgery and just the word cancer have elevated my stress level tremendously. What can I expect during the recovery process?

dennycee

Welcome to the csn boards.

So sorry for the circumstances that drive you here.  Sometimes I think that the ACS does a disservice to to lung cancer patients by spending their time and focus primarily on smoking. M There are so many other risk factors that do not include smoke or second hand smoke.  The fact is that if you have lungs, you are at risk for lung cancer.  ( yes smoke is the largest known factor but the number of LCs in never smokers is on the rise and because they don't have this as a risk factor, their doctors often ignore it until it is too late.) 

Cancer is no longer an automatic death sentence.  If found at an early stage doctors will work for a cure.  Have they done a PET scan yet?  What about a bone scan? 

When you meet with your thoracic oncology surgeon she/he will discuss surgical types with you.  The first being the standard thoracotomy.  The chest is cut from the bottom to top of rib cage and ribs broken using a spreader to move them out of their way so they can access the lung.  The second type is the video assisted thoracic surgery (VATS).  The VATS is done making several smaller incisions and accessing the tumor that way.  They may choose to remove part of the affected lobe or the whole lobe.  Sometimes they go in doing the VATS and have to switch if the tumor is difficult to access without getting clear margins. 

After the surgery is complete, they insert a chest tube to drain for 24 hrs or so.  When you have recovered a bit they may decide to do chemo as a preventative measure.  If your surgeon tells you the cannot do a VATS, get a second opinion- preferably at a teaching hospital.   Please let us know how the consult and treatment go. Thanks

cookemi

Thank you for the response! I

Thank you for the response! I am scheduled to do a PET scan early next week along with an Octreotide scan which should display any other carcinoid tumors I may have. I'll keep you posted. 

katenorwood

cookemi said:

Thank you for the response! I

Thank you for the response! I am scheduled to do a PET scan early next week along with an Octreotide scan which should display any other carcinoid tumors I may have. I'll keep you posted. 

Very sorry for the dx you received

Hello,

I'm usually on the H/N board but have recently found this site.  I had a recent VATS/Wedge resect done a few weeks ago.  They were certain because of my dx I had mets to the lung.  They didn't want to put me through two procedures so we opted for the VATS.  Mine came back clean....no mets.  But if they decide to do this procedure on you maybe I can answer a few questions down the road for you.  Please keep us updated....and welcome to the board.   Katie

TriciaB13

been there....

I am 27 and was diagnosed march 2012. I am am nonsmoker as well and for years was told I was an asthmatic. Until oneday, just like you i was extremly short of breath, my face was swollen and weezing. CT scan revealed 6mm mass in my right main stem bronchus. Octreotide scan said the same thing.carcinoid tumors are hormone based so the "typical" causes of lung cancer dont apply.  Got a second opinion at mayo clinic in minnesota where they told me they could save my lung, doctors here in VA were saying chemo, radiation and removal of my right lung...SCARY!!! got married may 5 2012 and had surgery may 29 2012 in minnesota. I had a open total right thoracotomy, as promised the surgeon removed the cancer from my bronchus and saved my lung..I was in the hospital a week....had a chest tube for a few days and a PCA pump for pain management. Came home and was out of work 3 months to recover....which wasnt long enough apparently. I am out of work right now for 30 days whlie im in my second round of aggressive physical therapy to correct muscular deficits i still have 8 months later.I still get winded going up stairs or if im to active because my lung is now considerably shorter on the right side and my diaphragm is still restricted.  I am also seeing a pain management specialst because I have post thoracotomy pain sydrome which is a chronic pain disease. some days are better than others but Im learnng to deal and hopin I can find a combo that works. I never had chemo or radiation...doctors were honest with me in that they are not proven therapies. I know its scary...Im 8 months cancer free, but the magnitude of what has happened over those last 8 months sill has not fully sunken in yet....DOnt be afraid to ask questions...get a second opinion if you dont feel comfortable with what the doctors are saying...it could save your life..mine did! Oh...after your surgery you are goin to find in hard to sleep laying flat. get a wedge pillow!! The wedge elevates you to a comfortable point and takes the pressure off your side and your lungs. I wouldnt have been able to sleep without it. the ribbon for carcinoid cancer is zebra striped which i find awesome! go on www.choosehope.com they carry some awesome support stuff.

Good luck!  

cookemi

TriciaB13 said:

been there....

I am 27 and was diagnosed march 2012. I am am nonsmoker as well and for years was told I was an asthmatic. Until oneday, just like you i was extremly short of breath, my face was swollen and weezing. CT scan revealed 6mm mass in my right main stem bronchus. Octreotide scan said the same thing.carcinoid tumors are hormone based so the "typical" causes of lung cancer dont apply.  Got a second opinion at mayo clinic in minnesota where they told me they could save my lung, doctors here in VA were saying chemo, radiation and removal of my right lung...SCARY!!! got married may 5 2012 and had surgery may 29 2012 in minnesota. I had a open total right thoracotomy, as promised the surgeon removed the cancer from my bronchus and saved my lung..I was in the hospital a week....had a chest tube for a few days and a PCA pump for pain management. Came home and was out of work 3 months to recover....which wasnt long enough apparently. I am out of work right now for 30 days whlie im in my second round of aggressive physical therapy to correct muscular deficits i still have 8 months later.I still get winded going up stairs or if im to active because my lung is now considerably shorter on the right side and my diaphragm is still restricted.  I am also seeing a pain management specialst because I have post thoracotomy pain sydrome which is a chronic pain disease. some days are better than others but Im learnng to deal and hopin I can find a combo that works. I never had chemo or radiation...doctors were honest with me in that they are not proven therapies. I know its scary...Im 8 months cancer free, but the magnitude of what has happened over those last 8 months sill has not fully sunken in yet....DOnt be afraid to ask questions...get a second opinion if you dont feel comfortable with what the doctors are saying...it could save your life..mine did! Oh...after your surgery you are goin to find in hard to sleep laying flat. get a wedge pillow!! The wedge elevates you to a comfortable point and takes the pressure off your side and your lungs. I wouldnt have been able to sleep without it. the ribbon for carcinoid cancer is zebra striped which i find awesome! go on www.choosehope.com they carry some awesome support stuff.

Good luck!  

update

Thanks so much for your feedback! Tricia, it sounds like we are experiencing the same thing. 

I am having a right thoracotomy on Friday (As in 2 days from now...yikes!) where they are going to be removing the lower lobe of my right lung, My surgeon showed me my scans and it was quite obvious that the lobe isn't really functioning anyway because of the size of my tumor. He was very personable and I seem confident that he's the right choice. I definitely feel like I got lucky in that department. 

I am extremely anxious about the surgery mostly because I don't know what to expect. This is my first health crisis and first surgery so it helps to get feedback from those who have experienced it all before me. 

Thanks for the tip about the wedge pillow! I will make sure to get one before I head home from the hospital. 

jhig

cookemi said:

update

Thanks so much for your feedback! Tricia, it sounds like we are experiencing the same thing. 

I am having a right thoracotomy on Friday (As in 2 days from now...yikes!) where they are going to be removing the lower lobe of my right lung, My surgeon showed me my scans and it was quite obvious that the lobe isn't really functioning anyway because of the size of my tumor. He was very personable and I seem confident that he's the right choice. I definitely feel like I got lucky in that department. 

I am extremely anxious about the surgery mostly because I don't know what to expect. This is my first health crisis and first surgery so it helps to get feedback from those who have experienced it all before me. 

Thanks for the tip about the wedge pillow! I will make sure to get one before I head home from the hospital. 

update

Wishing you the very best on your surgery!

TriciaB13

cookemi said:

update

Thanks so much for your feedback! Tricia, it sounds like we are experiencing the same thing. 

I am having a right thoracotomy on Friday (As in 2 days from now...yikes!) where they are going to be removing the lower lobe of my right lung, My surgeon showed me my scans and it was quite obvious that the lobe isn't really functioning anyway because of the size of my tumor. He was very personable and I seem confident that he's the right choice. I definitely feel like I got lucky in that department. 

I am extremely anxious about the surgery mostly because I don't know what to expect. This is my first health crisis and first surgery so it helps to get feedback from those who have experienced it all before me. 

Thanks for the tip about the wedge pillow! I will make sure to get one before I head home from the hospital. 

update

So I was late in reading this so by my calculations you are recovering from surgery...Please keep me posted I will be here if you need anything. Answers to questions or just support from someone whos been there. I am almost 9 months cancer free and still recovering..It is a slow process but complete healing is achievable for me and you!

 

 

 

 

 

cookemi

TriciaB13 said:

update

So I was late in reading this so by my calculations you are recovering from surgery...Please keep me posted I will be here if you need anything. Answers to questions or just support from someone whos been there. I am almost 9 months cancer free and still recovering..It is a slow process but complete healing is achievable for me and you!

 

 

 

 

 

ten days out

So, I am about ten days out from surgery and I am rotating between good and bad days. At first my pain meds seemed to work really well but now, not so much. I had been starting to space them out some more but maybe it was too soon to do so. The wedge pillow is a god send at night for sleeping as well. I knew this was going to be a painful recovery but I really had no idea just how much. I am starting to walk more and can only make it about 15 minutes before I need to stop. It's so frustrating since I was a runner before all this! I'm trying to stay positive and take it one day at a time...

My follow-up with the surgeon and onclologist are in about two weeks where we will confirm that the cancer really is gone and no further treatment is necessary. Unfortunately, although it was a typical carcinoid, it had started to spread to an outlying lymph node. My fingers are crossed that they got everything in surgery. 

cookemi

TriciaB13 said:

update

So I was late in reading this so by my calculations you are recovering from surgery...Please keep me posted I will be here if you need anything. Answers to questions or just support from someone whos been there. I am almost 9 months cancer free and still recovering..It is a slow process but complete healing is achievable for me and you!

 

 

 

 

 

ten days out

So, I am about ten days out from surgery and I am rotating between good and bad days. At first my pain meds seemed to work really well but now, not so much. I had been starting to space them out some more but maybe it was too soon to do so. The wedge pillow is a god send at night for sleeping as well. I knew this was going to be a painful recovery but I really had no idea just how much. I am starting to walk more and can only make it about 15 minutes before I need to stop. It's so frustrating since I was a runner before all this! I'm trying to stay positive and take it one day at a time...

My follow-up with the surgeon and onclologist are in about two weeks where we will confirm that the cancer really is gone and no further treatment is necessary. Unfortunately, although it was a typical carcinoid, it had started to spread to an outlying lymph node. My fingers are crossed that they got everything in surgery. 

dennycee

cookemi said:

ten days out

So, I am about ten days out from surgery and I am rotating between good and bad days. At first my pain meds seemed to work really well but now, not so much. I had been starting to space them out some more but maybe it was too soon to do so. The wedge pillow is a god send at night for sleeping as well. I knew this was going to be a painful recovery but I really had no idea just how much. I am starting to walk more and can only make it about 15 minutes before I need to stop. It's so frustrating since I was a runner before all this! I'm trying to stay positive and take it one day at a time...

My follow-up with the surgeon and onclologist are in about two weeks where we will confirm that the cancer really is gone and no further treatment is necessary. Unfortunately, although it was a typical carcinoid, it had started to spread to an outlying lymph node. My fingers are crossed that they got everything in surgery. 

Treatment

Please talk to your doctor about adjuvant chemo.  It does not have to be as long as regular chemo and it doesn't need to be as strong either.  In your entry you mention that there might be some in a lymph node.  Think of it as insurance.  These boards and the others at inspire or cancegrace are filled with stage one and two patients who skipped the adjuvant therapy only to rediscover it at stage 4.  

cookemi

oncology follow-up

I will definitely talk with my oncologist about follow up treatments. Of course, I just want to be done with all this but I also don't want to miss something and have it be worse in the future. 

TriciaB13

cookemi said:

ten days out

So, I am about ten days out from surgery and I am rotating between good and bad days. At first my pain meds seemed to work really well but now, not so much. I had been starting to space them out some more but maybe it was too soon to do so. The wedge pillow is a god send at night for sleeping as well. I knew this was going to be a painful recovery but I really had no idea just how much. I am starting to walk more and can only make it about 15 minutes before I need to stop. It's so frustrating since I was a runner before all this! I'm trying to stay positive and take it one day at a time...

My follow-up with the surgeon and onclologist are in about two weeks where we will confirm that the cancer really is gone and no further treatment is necessary. Unfortunately, although it was a typical carcinoid, it had started to spread to an outlying lymph node. My fingers are crossed that they got everything in surgery. 

Hunny, Im going to be honest with you I am 9 months out and still have good days and bad days. I'm glad you have found comfort in the wedge pillow  Dont' be frustrated that you get tired easily, I was had a wheelchair anytime we went out for long periods because I knew I could walk for a few minutes then would need rest. This is all part of the process. Wishing you luck and keeping my fingers corssed for your upcoming appointment, Im sure it will all be great news! Keep a positive attitude and you are stronger than you realize. Im still doing physical therpay and I see a pain specalist but I am back to work as a hospice nurse. You will make it back to somewhat-normal then normal before you know it.

 

 

 

Xiaowang

No surgery
Sorry. your tumor is so big. I think you should ask more doctors before deciding. My relative did not have a surgery but 7 chemo and 10 year Iressa. He is alive. My point is if the cancer comes back,You will have surgery again. No! Radiation and chemo should be option, too. Talk to more oncologists. Be brave.