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carcinoid lung cancer

Posts: 7
Joined: Jun 2008

Hi I wanted to know if anybody out there has had this type of Cancer. I was diagnosed in September and had surgery to remove three quarters of my left lung in November 2007. They went in through my back and had to break several ribs to get the lung out, it's about an 8 inch scar. The operation was a piece of cake but the recovery was very difficult my ribs still hurt I still have numbness in my fingers and left breast. I guess it didn't hit me that I had Cancer until I saw it in Black and White. I figured it was just a large tumor but I didn't need chemo or radiation. Boy was I in for a shock. I just turned 40 and never smoked. I am having a really hard time with dealing with this. I am scared that it is elsewhere in my body or will it come back? My husband does not seem to understand what I am feeling he just tells me to get over it it was taken out and your fine. He seems to be very insensitive to what I am going through and what i have been through. I thought that I would have trouble breathing but because I have had symtoms that were misdiagnosed and my lung was collapsing that I should not feel any different than before my operation. And to tell others that are going in for an operation I actually feel better, I am not sick all the time coughing up blood, pneumonia etc. I have not even had a cold this winter. So if there is anybody out there I could use a friend to chat with, soebody who knows what i am going through. Maybe you know of support groups out there for this type of cancer. I know that I am very lucky that I persisted with the problems I had and got it removed while I am still in Stage 1. It could have been a lot worse. So I thank my lucky stars that I am here but I still can't get over what happened. Thanks in advance for sharing your experiences with me.

Greggriggs's picture
Posts: 132
Joined: Dec 2006

I feel your pain ..If any one that has had cancer and says they were not scared an are still not scared , they are different than most people I know .
I like to stay upbeat but you have to face real life also .I don't have many times in a day that cancer is not on my mind . Like you every time you lean back on those brokin ribs you are reminded. Also like you they took my left lung and told me they got all the cancer. I think you are lucky they did not do the Chemo . I don't think I would do it agin. It's been two years the ribs are better my left boob is still real sore to the touch ,but I hope your body recovers faster because you did not do the chemo.
I am bad because I know Chemo has saved some peoples lifes.
But in my case the surgery was not as bad as the cure.
Boy an I have read every article I could find on the internet about lungcancer and side affects .
And I get more answers from all of you than all the net stories. Funny you can look them all up and it's all about small cell or non small cell. and the stories don't change.
Enough of my ramblin.
You keep fightin and you are aloud all the complainin you want

Posts: 1048
Joined: Aug 2006

I have adenocarcinoma with BAC tendencies, different from yours perhaps but also stage 1. I was lucky in that I was already at a big teaching hospital and my oncologist for breast cancer (yep, I have that too!) was able to refer me to a thoracic surgeon that could remove stuff via a VATS procedure. That's like laproscopic surgery vs. the usual rib-cracking stuff. Mind you, he was sure he had stage 4 breast cancer on the first biopsy (you could have covered the 3 incisions with 3 different bandaids!). Then he had to go in again since the path report indicated I had LC not BC and I got a 4 incher and two more little cuts. UGH! How is a lady supposed to look good in a bathing suit with so many scars? Mind you, I go swimming anyhow, and skiing, kayaking, walking (forget running--my feet hurt) and daily jaunts to the gym. They managed to cut a nerve that makes certain muscles in my abdomen work. I will never manage an easy situp again and lots of my belly and back are numb. But I'm here and enjoying what I can do. I worry about the cancer coming back, but not as much as I used to. As I told the doctor, "how many times can cancer kill me!" He did not get the humor, but it was the best joke I could manage the week my diagnosis switched from stage 4 bc to stage 1 lc. I don't blame you for being scared it might come back. The stats are not friendly ones. So come here for support or call your local hospital for face to face support groups in your area. Lung cancer is way too common all over the US. Women are getting it more and more and the incidence is rising in both smokers and non-smokers. They are not sure why, but it still helps to be a non-smoker. Smoking really messes up your circulatory system and even one cigarettee slows healing and recovery after surgery. You can write me anytime and I'll write back as soon as my schedule allows.

Posts: 11
Joined: Jun 2008

I to have lung cancer,it's T2NOMO-small carcinoma Adenocarcinoma I can't say it nor tell what it is. The doctor wanted to operate now I said no, then he told my husband that I should have it done.My husband told him that was up to me. I'm a person that has to know everything about it, so I went on the net for 2 weeks before I would do anything. 4 months later I had to see him again and I had a piece taken out for my left lung. The next week he call and made an appointment to tell my husband that it has to come out. I told the doctor to talk to me, it's my body and he's not my boss. I ask if there were other things that I could check on first. Doctor said yes but he was going to tell them that I should be operated. I told him that's up to me, I didn't like him at all. Everytime my husband left the room, the doctor told me to make up my will because I won't be here in 5 years. I don't like to be in a spot so I told him, he gave me more time than I thought. When my husband can in I told him in front of the doctor that I have 5 years left and I would help him find a new wife. I went to chemo and ask the doctors there, they said that the other doctor said that I should be operated, skip all my questions. Then I went to radiation doctor to ask him and before he open his mouth I told him I didn't want to hear operate.He was very nice to talk to and he answer my questions, so that's what I went for. My husband couldn't care less he didn't go with me to have rad. done,I did it for 45 days and my husband didn't ask how I was doing. I could use some one to talk to because I don't have anyone so I hold it in. The reason is that I moved from London to Windsor and my friends don't want to listen. Thet don't know what you are going through. I'm not afraid to die because lung cancer runs in the family. I'm from Canada

Posts: 7
Joined: Jun 2008

Hi thanks for the reply and I am so sorry i wasn't able to respond to you earlier I have not been on my computer in a while. I just passed a Kidney stone a couple of weeks ago and I had an ultrasound today and i have a large kidney stone that needs to be operated on next week. I swear I have the worst luck when it comes to your health...I totally can understand what you are going thru I research everything but some things you can't find. You have to put your life in someone else's hands and you have to choose a doctor that you trust and feel safe with. When they told me they had to take out 3/4 of my lung I was scared but I am a fighter and I am going to beat this...So can you! I don't have any support with my husband, none of my friends want to hear about it anymore that is why I turned to this website and communicate with others that are going through the same things. I was suppose to go on vacation with my family next week and my husband asks me can I delay the operation until I get back! Sometimes I really can't stand him I told him to go with the kids and I would take care of my self. I don't get the name they put with my lung cancer either, but they told me that if i had it taken out I would have a better life then if i didn't. They told me that chemo or radiation would not help so that was not an option. I had the operation back in November and except for the Kidney thing I have not been sick one day! The worst part of the entire operation and recovery was the broken ribs, they caused a great deal of pain! I went to the doctor by myself because if he was going to give me a timeline I wasn't going to tell my family. I think that you should see another doctor, Massachusetts General Hospital is the best! It saved my life. The doctor should not have spoken to you that way, but coming from someone who had 3/4 of my left lung out I would do it again in a heartbeat. They were able to tell me that it looks like it hasn't spread which is the best news ever. Don't allow yourself to think about not being afraid of dying because you need to fight, you can beat this. It is hard to find any support groups out there that the people aren't going through chemo or radiation. I can't relate to that because I wasn't given that option. So remain positive and believe in yourself you can get through this! Again it is really difficult to have a doctor tell you what to do and except it. Like I said earlier go to as many doctors or specialist that you need to until you trust one and ask him what your options are and what way you can have the best life possible. For me it was take the lung, it collapsed on me anyway and I don't really feel like I breath any differently because I was misdiagnosed for 3 years, oh it's your ulcer that's why your coughing up blood, oh it's a sinus infection that's why I whistled when I breathed, Oh you have pneumonia again you don't need a catscan. You have to be your own advocate for your health, your body will tell you what to do just listen to it. I am glad to have spoken to you and I look forward to communicating with you again. God bless and stay strong!

Posts: 7
Joined: Apr 2008

I had two surgeries. With all the advance technology, it doesn't surffer that much. I think Chemo is the hardest one to handle. While it is still operatable, cut the cancer out from your body and enjoy a cancer free life. May god give you the strength to remove the cancer out from your body.

Posts: 1
Joined: Feb 2009

I had a carcinoid tumour removed via lobectomy and part of my air canal in May 08. All I know in life is just to take it in small moments at a time and fear accomplishes so little. Mostly it sounds you just need to be heard unfortunately when we get sick so many people just can make it worse by not acknowledgely the many emotions happening. I felt as well it to be a bit scary one never knows the outcome.
Otherwise I am writing I know this is several months later but I hope your doctors do check ups regularly. I unfortunately am not feeling well in the slightest yet suffering from upper abdominal pain, flushing and asthma attacks. They are still searching for metastisis, I can barely work.....I am trying with all my might to get better. I want to tell you make sure that you dont overlook anything I ignored too many symptoms for too long abdominally and as well the lung symptoms I had for two years the doctor misdiagnosed me.
Study everything you can about carcinoid so if there are any changes in your body you will get to the bottom of it. Not to scare you the doctor wants us to always think we are cured, you need to know size of tumour and whether it was in the lymph glands. I didnt know they staged them, get speciifics on that and make sure they follow up.
The good news is this type of cancer has the best prognosis and if it comes back or spreads just know your body and get to the right doctors. I am learning by trial and error I am finally at a doctor that knows something. Before that most of them had only seen one patient.
Best of luck to you and hope you are back to spunky self!!

Posts: 1
Joined: Mar 2009

Hi Hanna, I just joined the support network and thought I would check to see if anyone else had the same cancer I had. In 2001 I had the upper part of my left lung removed and they went in on my left side and I am still somewhat numb under my left breast. Some of the feeling there came back over a period of several years so it's not as bad as at first. I do have alot of scars mainly from all the tubes they put in you after the surgery. I understand your concern, I was 53 when I had the surgery and I am 61 now. I never smoked either and I didn't go through what you have gone through with your lung collapsing and I didn't cough up blood. I just knew there was something wrong with me and set out to find out what that was. No one in my family had cancer but both parents had heart problems so my doctor sent me for heart tests. Finally after months of taking tests she said go have a chest x-ray and that showed something so then I had a catscan and then a fine needle biopsy. I was told this is a slow growing cancer and I had probably had it for 5-6 years before it showed on an x-ray. My husband (at the time, we are now divorced) had quit smoking for 20 years but started again right after my surgery.....I couldn't understand how he could be so insensitive. I also have asthma and so I do not breathe normally like before. I would welcome your input and experiences.

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