does anyone out there have carcinoid lung cancer?

• By NSCLC0606
• Posted December 1, 2006 at 7:56 am
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There is a website specifically for people with carcinoid tumors. They all seem to love a doctor Woltering. http://listserv.acor.org/archives/carcinoid.html You have to join, just as you did here to post or look at their posts. They all seem to be getting the same chemotherapy as I understand that if a carcinoid can be totally resected, that's the end of it, but if not it's chemo/radiation time.

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• By Chum
• Posted December 1, 2006 at 9:42 am
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Marcia,

Here's some good information: http://www.oncologychannel.com/cancermalignancy/

Courage

Chum

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• By ALYCE
• Posted March 5, 2007 at 10:03 am
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I am a 64 year old female that was recently diagnosed with a 1.5 cm Carcinoid tumor in the right upper lobe - my doctors say this can be cured by surgery, if there is no node involvement - My PET does not indicate a problem with the nodes, but surgeons will remove them (8) anyway, consequently I will not know until after surgery if they are involved. Surgery is scheduled for March 23rd at M D Anderson in Houston, Texas. I understand this is a rare tumor (approximately 2.5 diagnoses out of every 1M lung cancer patients. My question is: should I do anything to prepare for this surgery (more exercise, etc)? What should I expect re recovery, etc? I should mention, althought, they do VATS, my case does not qualify, so I will have the regular surgery. Doctors say they will conserve as much lung tissue as they can and worst case senario would be total upper lobe removal with an 18% lung decrease. Is there anyone here with same condition and would you please share your experience with me. Thank you and God Bless all who are participating on this site.

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• By Bethany
• Posted March 9, 2007 at 12:50 am
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Hi Marcia, I was looking for answers for my own carcinoid and saw your posting. I am a 62 year old female and learned on November 29th of 2006 that I have carcinoids in both lungs. There are 20+ in the left lung and 2 in the right lung. They were seen on a ct of the liver. I then had another ct scan of the lungs to get a clearer view of them. I had a thoracoscopy scheduled, which because of the difficult location of the nodule , was converted to a posterolateral thoracotomy. I was informed that the nodules were non-cancerous and that I would have no need for concern. However the nodule was sent off for pathology and I learned at my follow up appointment with my surgeon that I had a rare form of cancer called Carcinoid. All the nodules have been confirmed as cancer. At this time the only treatment I have recieved has been the biopsy and two follow up ct scans. The oncologist that I was referred to has very little knowledge of how to treat my carcinoids and is choosing to watch and wait until I have some symptoms to treat. He is of the opinion that since carcinoids are slow growing that it will be years before I have any real problem with the disease.


I am not confortable with this and have been trying to find someone that has more knowledge of how and when to treat carcinoids. I've been online reading everything I can find and it seems that surgery to remove them is the best treatment. So far I have had no luck finding anyone in my area that has treated anyone who has Carcinoid cancer.


I am feeling really overwhelmed even though I know that others have this disease and there must be physicians that are familiar with the treatment. You are the first person that I have found to communicate with and it sounds as though you and I are both looking for the same answers. I did find a web site recently that has a list of specialist and treatment centers. Try The Carcinoid Cancer Foundation.Inc, there is a lot of information on their web page. Also try this site forums@rare-cancer.org. You will have to register with them when you use their site.

I haven't been much help as for answers to your questions but I am hoping that you have found another source for information. My quest is still on for any information I can learn. Hopefully someone will read this and will have answers for both of us.

I'm sorry to write so much but it really is a relief to know someone that has the same disease that I do. By the way, at this time they haven't found cancer anywhere other than the lungs so I suppose that is something to be thankful for. I hope that you will keep me informed as you have treatment and learn more. I will keep you in my prayers also.

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• By marcia1
• Posted March 10, 2007 at 2:38 pm
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Hi Bethany.
I'm sorry to hear about your condition. I'm new to this too but I know it wouldn't work for me if someone told me to watch and wait. Actually the truth is that I did watch and wait and just recently am moving toward having a biopsy and surgery. I've been watching my single tumor for almost 3 years and it hasn't changed in any way readable by PET or CT scans. I was hoping to continue monitoring myself in this way until my tumor either got hotter on a PET or grew on a CT scan. With my most recent scan a doctor gave me an additional piece of information that I hadn't known. That is that these tumors can metastisize without warning, without growing or becoming more metabolically active. So I'm making the hard choice to go to a carcinoid center (I'm making an educated guess that my tumor is carcinoid, I haven't even biopsied it yet) and have a surgical biopsy on the surgery table and let the surgeon decide the appropriate next move and either remove just the tumor, a lobe, or my whole lung all in one hopefully VAT surgery. I guess there is the possibility it won't be carcinoid and it may need to be the bigger traditional surgery. This is a rough decision for me. I'm doing a lot of self work on myself. So good luck to you. I found my doctors on the internet. Cedars-Sinai in LA has a carcinoid center. I made appointments with a carcinoid specialist there and his favorite surgeon and have proceeded from there. We'll see how it all pans out.. MY heart is with you. Marcia

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• By Bethany
• Posted March 10, 2007 at 11:55 pm
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Hi Marcia,
Thanks so much for answering me, I was beginning to feel that I was all alone with this disease. Most of what I have read tells me that I have a rather rare situation. Most lung Carcinoids come from some other primary cancer site in the body and end up in the lung, we have not located a primary site for me. Today I was reading on yet another cancer site which told me that carcinoids with no primary site are the worst type of cancer and now I'm really concerned. I know that God will be with me thru the whole process, its just the not knowing that is most difficult for me. I feel that I am strong enough to deal with whatever as long as I know what it is. I feel sure that most of us feel that way also.

I'm happy that you have made the choice to have the surgeon take a look at you. I feel that you have made the right choice in having the biopsy, especially after waiting and watching for 3 years. Thankfully someone gave you that addition information so that you felt the need to get to a specialist. I will definately keep you in my prayers, and the doctors also, that you will get good news and it is a carcinoid and surgery will be all that you need. I understand that it had to be a rough decision to make, but you have made it and that is a positive step. I would like it if you would consider keeping me informed on your results and what discission you make as to the treatment. You stated that you found your appointment with a carcinoid specialist you found on the internet. Would you be willing to share the website or his name and phone number with me? I have already had the biopsy and know that mine is carcinoids, but because I rated very high on the breathing test, no one even suspected that I had cancer. I found out that I had cancer 5 days after my biopsy, so taking portions of the lung was never an option for me. At least not yet.

I am going back into some of the cancer sites and try to find names and locations of specialist, so hopefully I will find someone even tonight and be able to call and make an appt Monday. When is your appointment? Good luck and I will be thinking of you until I hear from you again. Once again thanks for your response. I hate that you have this awful disease, but hopefully you understand that having someone that has my same concerns is somewhat a confort to me. God bless you, Joan

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• By marcia1
• Posted March 12, 2007 at 4:11 pm
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I don't remember which site I got the name of the specialists and research centers from. I stumble across it periodically when I have time follow links and tend to get lost in a maze of link ups. I am not very internet savy and just do the best I can. Another site I am just getting started with is carcinoid.org. You can go there, register, and link up with people who specifically are dealing with carcinoids. I think you will find ways to query MDs and Carcinoid Centers on that site. I will get back to you if I find another site.
I'm still setting up dates for my biopsy/surgery. I think it will be mid June.
I'll be thinking of you. Marcia

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• By Bethany
• Posted March 14, 2007 at 11:42 pm
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Hi Marcia,

Thanks for the information you shared with me. However before I had a chance to take advantage of it I recieved the same information from another source. My insurance company thru my work has for the past few years has provided me with a nurse that calls me maybe 3 to 4 times a year to check on my health. She is there to answer questions or for support with any problems I may have with my health or my caregivers. I have called her on occasions such as when I got really ill during the night and didn't want to make the long trip into the emergency room at the hospital. So to make a long story short, I recieved a call from her checking on my progress. After hearing of the carcinoid cancer she gave me quite a lot of information and referred me to a cancer research center for help locating a specialist. This was yesterday, today I recieved a call from a lady at the research center and she had several options open to me. My choices were the same as most other carcinoid patients, only she has the resources to direct me. After telling me where the carcinoid centers are located and who the specialist are, she actually did the leg work for me and called to get references for me about the ones I thought might work. We decided on a specialist in Minnesota and she called to find out what I need to do in order to make an appointment with the doctor. In less than 2 hours I had the phone # of the new patient registration office and had made the initial call there myself. I have an appoitment to be seen on Monday the 19th. Now I just have to be able to get off work in order to keep it. Everything went so quick that I am afraid to believe that this could actually be happening. I wanted to let you know that there is help out there and it comes from the strangest places. So hang in and don't give up. I hope that you will have your appointment soon and have an answer to everything. Thanks again for your help. I hope we can stay in touch and please use me as a sounding board if you need someone to vent with or just someone to share your thoughts with. I'm happy that I have met you and hope that we can become friends.
As always I will keep you included in my prayers.

God bless,
Bethany

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• By mangolola
• Posted January 26, 2009 at 3:05 pm
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Hi everyone!! i just had a 4.3 cm carcinoid tumor removed on Nov 17th. I am 27 years old, and now have had my lower left lobe removed to take care of it. My test results along with my lymph node removal came back clean, so the removal of the tumor was all i needed. It all started 2 years ago when i felt a dense pain in my upper left back area along with a bit of blood i coughed up, and went to the Dr only to get some antibiotics ( i was told it was bronchitis). Just this October i coughed up blood again, and changed my health care to Kaiser, who immediatly ordered Xrays. A mass was caught on those X rays, and that was the start of the scariest stuff i have ever imagined. The thoughts that run through your head are just indescribable, and the fear you feel until you know what your dealing with is horrid. I under went the CT guided needle biopsy, more CT scans,- which thankfully came back as a Carcinoid tumor and nothing worse!! And then the big surgery was Nov 17th. I had the full on open surgery on my back, not the VATS - Kaiser did this, and i had a great surgeon i was very comfortable with. I was in intensive care for 2 nights, with the epidural for pain, and then out of the hospital all together in about a week. I had a chest tube for drainage for a week after i went home. Now im healing slowly and thankful for every minute i have here on Earth!! Kaiser did a really kick butt job at all of this, i really think they made this whole process easier and im happy i switched health care providers!!

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• By 1982carcinoid
• Posted March 23, 2009 at 9:35 pm
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Just a word of encouragement to everybody! I had a carcinoid in my left lung in 1982 and I am still alive.

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• By 1982carcinoid
• Posted March 23, 2009 at 9:36 pm
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I had a carcinoid in my left lung in 1982 when I was 22 and am still alive. Just a word of encouragement to all those who are in the same situation.

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• By marcia1
• Posted April 5, 2009 at 3:43 pm
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Hi.

I just wanted to update any of you who are still looking at this site. I started the query above when I was processing my decision to have surgery or not. My tumor never grew or caused me symptoms and I was having a tough time looking at possibly losing a lung and significantly changing my lifestyle. It was a good introspective journey, ultimately deciding to go ahead with surgery, not knowing how much lung tissue was at risk, what type of tumor it was or how compromised I would be after it was over.

The VAT surgery by Dr. McKenna at Cedars Sinai Hospital in LA was in June 2007. My left upper lobe was removed containing a 5cm carcinoid tumor. I was in the hospital for 3 days. There was no lymph involvement, so no further treatment other than routine follow up. My oncologist , Dr. Wolin, is a carcinoid specialist. Cedars has a carcinoid tumor center.

I'm glad I did it. My family and friends are also very happy. My only residual postsurgical effect is I'm a bit slow recovering from long steep stairways or hiking up steep hills. It isn't enough to stop me from going and doing anything I could before. I may have to reconsider my desire to climb half dome.

My process helped me get clear about the gift of life and my relationships. I wish you all the best. Marcia

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