27 year-old woman, typical carcinoid tumor, need advice

Hello all,

First of all let me say I am so inspired and awed by everyone here who has been so brave in the face of cancer. I am looking to all of you fighters out there for support and advice. I am only 27 years old and feel like my whole life is still ahead of me. I just got married 5 months ago and I have been totally healthy, thin and active my entire life. My mind is reeling from my doctors coming into my hospital room three days ago and telling me that I am officially a cancer patient.

10 days ago I underwent a lower lobectomy (50% of the left lung) for a large (4.0cm tumor). It turned out to be a typical carcinoid tumor. My surgery was an open surgery (not VATS) because it was pressing against my main pulmonary vein.

The pain is better than I thought it would be. In fact, the whole recovery has been better than expected. I can walk around reasonably well now (am walking 30 minutes a day so far!) At times however it is hard to sleep at night and the pain can be bad. I hope it gets better because I do get exhausted - the pain never quite goes away.

However, I am determined to remain positive about this and wear my 5 inch scar as a badge of honor. I am slowly weaning myself off the vicodin because I hate the dizziness and nausea, and it's been do-able.

Meanwhile I feel very lucky because doctors have told me that I don't need chemo and wouldn't respond to it anyway. They seem to think that my prognosis is excellent - tumor was large but only miniscule involvement with local lymph nodes and no involvement with the main lymph nodes in chest. Surgeon said he got it all, and he thinks I am in all likelihood cured. I feel so very fortunate for that.

Is there anyone else out there that has been diagnosed with a typical carcinoid tumor in the lung? Will recovery get better and easier? Should I expect a recurrence or the cancer to show up somewhere else later in life? My first meeting with an oncologist is this Wednesday and I am nervous. Any advice from anyone at all who had an open thoracotomy?

Thank you all for sharing your stories, advice and time.

Best
Liliana

By loophole
Posted February 22, 2009 at 5:38 pm
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Hello

Went thorugh same thing Dec 23, am feeling great. plan on golfing this week, sking late March .
First four weeks sucked, drain whole wound sore and hard to take big breaths. Started inproving fast after that . I got off pain med at five weeks and tried to keep pushing myself every day
Docs say I'm cancer free, need chest xray six months. Thanks for wife good freinds and a lots of praying.
We like to say carcinoid tumors are sisy cancers, You can beat it

By Munker
Posted February 22, 2009 at 5:51 pm
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I had open surgery in August and was off painkillers in a couple of weeks. Walking several miles 2 weeks post op but I can't say that it has been an easy recovery for me. I still suffer from a constant pulling and tighness under my breast and back. Although it has not stopped me from leading a normal life it sure is annyoing and a constant reminder. I too did not require chemo or radiation but I had no lymph node involvement. I am concerned that the doctor said you may not need any further treatment even though there was miniscule involvement in local lymph nodes. Best bet with this cancer is a very aggressive approach and I went to a couple of oncologists before I made my decision not to pursue further treament.

By lyaeger
Posted February 22, 2009 at 6:14 pm
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Carcinoid is a different animal and getting a diagnosis of typical has the best prognosis. I have carcinoid also but they can't figure out exactly what it is or how it is behaving and it may be mixed with adeno. I have learned a lot about carcinoid at www.carcinoid.org. You need to go to a specialist who knows carcinoids. These doctors are rare but there is a list of them on the web site. Carcinoid is monitored and treated differently than NSCLC and SCLC. Many doctors think it is not even cancer and want to do nothing but surgery but this is a dangerous course, for many reasons that you can read about on the web site I gave you. Lung carcinoids ('lungnoids') are the rarest of the rare and there is a discussion group you can join on Yahoo for it. It is a small group because the disease is so rare but the people there are very helpful. The email is lungnoids@yahoo.com but you need to go to the Yahoo groups page and ask to be added.

If you want to know more you I would be glad to help you offlist. Just send me a friend invitation.

I had surgery last April and felt great in just a few months so hang in there. You will get better and typical carcinoid is the best diagnosis you could hope for if you have cancer.

Good luck,
Linda

By peyz33
Posted February 22, 2009 at 6:23 pm
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All surgeons will say that they got it all - but can you be sure? I would ask about adjunctive chemo - I know it sucks - but if you were stage 2 it has been proven to be beneficial.
Karen

By pw
Posted February 22, 2009 at 7:39 pm
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My husband had a similar surgery in 2001 but his tumor was an Adenocarinoma and he did have 2 lymphnodes involved. His recovery went well, like yours, but it did take him almost 6 months to feel totally normal again. He did have Chemo and radiation but again, his was NOT a carcinoid tumor. I do agree with that previous post, though about getting one or two opinions about follow up chemo....It can't hurt! Good luck...

By susie2
Posted February 23, 2009 at 12:08 pm
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Hi i am 32, original tumour was 5cm and that was staged 1B which automatically means you get chemo. You should double check or get a second opinion, i would think just to make sure you are doing everything you can.
Let us know how you get on
Susie x

By TomNY
Posted February 23, 2009 at 2:05 pm
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Liliana,

I also had a carcinoid in my lung, but was fortunate to have the VATS for my lobectomy. Similar to you, I was told by some that chemo is not needed/effective and that the chemo should be done by others. This question has driven me crazy because you only get one first shot with cancer, even carcinoid, which is about as non-agressive as a cancer can be.

Like you, I came to this group and the Yahoo lung-noid group, as well as the other sites posted above, to see how people with a primary carcinoid of the lung fared and if the future is truly as rosy as the doctors kept telling me. I learned that carcinoid is extremely rare and that where you get it affects your prognosis. If it can be removed, as in the case of a lung primary, the prognosis is good- remove it with some lung and (eventually) go back to your life. If it is in a place where they can't remove it, it is managed like a chronic disease and you can live with it for decades, like diabetes or CHF.

In the lungnoid group, I found several people who started out with a lungnoid primary and their story did not play as my doctors predicted; several wishing that they had gotten the chemo. In fact, I could not find a single person whose story went the way the doctors said. They must exist based on the statistics but were nowhere to be found. This worried me and I became frantic for information because typical carcinoid is the overwhelming majority of lungnoids and not supposed behave that way.

Along the way, I had my surgery in mid-January of this year. Although the pathology report showed it was typical and about as unaggressive as a carcinoid can be, one nurse told me that I would need chemo. I had not yet spoken with my doctor and wasn't due to see him until the following Monday. I let it drive me crazy for one night, but decided to hear what my surgeon/oncologist had to say before giving it another thought. In the meantime I went to my primary doctor, who had not seen the pathology report but cited the criteria for when chemo is indicated and reminded me that I would not to start chemo or any other treatment without a second opinion. When I saw the surgeon, he told me that chemo was definitely not indicated in my case, nor would it help. This corroborated several research studies I had read online. While I don't wish to discount the experiences of the people who shared their stories, I opted to not pursue the chemo issue further.

The point to my story is to talk with your doctors. If you are not comfortable with what they tell you, get a second opinion from someone familiar with carcinoid. Because carcinoid is rare, you will probably need to go to a major cancer center to find anyone with extensive carcinoid experience. Each patient is different and protocols differ for each type of cancer. You need someone with intimate familiarity with your needs.

As for the other lungnoids with the best outcomes who can't be found, I am praying that it is because they have healed and don't come to these groups anymore. In a way, I understand, but I wish they left some word behind whether they are OK or not for us newbies. I am trying to leave record in my journal that will hopefully help others facing this question and I plan on posting on a regular basis over the next few years.

The recovery process from surgery itself happens faster than it feels at 10 days. Like you, they had me walking at least a mile every day starting the day after surgery. I quickly gained the strength and the wind to walk several miles a day within a week of returning home and was able to run four weeks after returning home. I still fatigue easily but that is improving too. I know thoracotamy recovery is a different from VATS, but I know that you will be feeling more normal soon.

Tom

PS - another great support group is http://carcinoidawareness.moonfruit.com/ .

By liligoldman
Posted March 5, 2009 at 11:25 am
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Thank you all for the wonderful words and support.

I have spoken with my oncologist and he seems to feel that my life is ahead of me in all its glory - I just need check-ups every 6 months, but other than that I am free of cancer and ready to live! Hallelujah!

By 1982carcinoid
Posted March 20, 2009 at 10:22 pm
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Hello Liliana,

I have good news for you!!!! Excellent news! In 1982, I was just 22 years old, pretty like you and was diagnosed with a primary typical carcinoid lung. In 1982, it was still considered not cancer. All I had was operation, 50% of my left lung was removed. Three years later, I was told by my doctor in Brazil that it was a cancer in a low level. I am still alive! It has been 27 years so far. Although I had several pneumonias along the way, as well as a few more symptoms of a cancer/carcinoid, nothing has ever been found. I smoked all these years, except for 5 and finally I quit it in October 2007 when my late husband was diagnosed with cancer in the brain. I don't have lots of energy, maybe it is not related to my carcinoid. Your young, very active, just don't give up! You can make it! Carcinoids they live forever in a person's body. If you would like to talk to me, feel free to e-mail me at metheverybest@hotmail.com.

By JoanneMarie
Posted May 23, 2009 at 4:23 pm
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Liliana:

I had open surgery (upper lobectomy and sleeve resection) for a carcinoid tumor on 2/12/09 that was completely obstructing my left upper lobe and occluding 75% of my left lower lobe. I too am free of cancer and back to work about five weeks now. I am taking in more air now than I had been able to for the past twenty years.

The extraordinary news is that we can live a long time after eradicating the carcinoid tumor. The medical director of the rehab establishment I was in told me that his father had the same surgery in 1970 and he is now ninety-one.

Because the doctor used the muscle between my fourth and fifth rib to hold my lung together, I still experience some (mostly minor) pain and numbness on my left chest area.

Oh, but it is so good to be alive!

I am interested in your current progress.

Sincerely,
Joanne

By SamG
Posted June 12, 2009 at 1:06 am
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Hi there,
I've recently been diagnosed with a typical carcinoid tumour which is obstructing my left bronchial,where it attaches to my lung.

The surgeon says he will not be able to perform a resection due to the position of the tumour and will have to carry out a pneomonectomy, therefore losing my left lung.

I will be going in for surgery on Tuesday June 16 in Sydney Australia.

I am not looking forward to the sugery and the post surgery pain. To tell the truth I am really scared.

If there is anyone out there who has had a similar operationI would like to hear from you before I go in.

Hope to speak to you soon after the operation.

SamG

By liligoldman
Posted June 12, 2009 at 1:40 am
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Hey Sam,

Listen you are probably just REELING from this information. First of all, you are going through something absolutely CRAZY and life-changing and you have every right to feel shocked, bewildered, and anxious about what you are going to be facing. What you are going through is crazy and the emotions you are feeling are only normal. However I am here to tell you that YOU CAN DO THIS. I know it seems absolutely overwhelming right now, I was absolutely terrified before my surgery, but with the medicine and pain-killers they have these days, it is totally do-able. It sucks but mostly it sucks because you have to sit around for 6-8 weeks not being able to do too much and it's easy to get stir-crazy.

Okay, let's take one thing at a time. First of all, regarding the cancer-issue. The good news is that carcinoid tumors, when removed, have an EXCELLENT prognosis. Thank goodness your carcinoid is typical! Atypical do not have nearly as good of a prognosis. Typical carcinoids usually metastasize no further than local lymph nodes, and surgery is considered curative for the most part. So the fact that you have to remove your left lung SUCKS, but there is no reason that beyond the big surgery, you will not live a full and healthy life once you've recovered.

Secondly, the issue of losing your left lung. It is a difficult surgery, and you should definitely make sure you have chosen a surgeon who has LOTS of experience with these types of surgery. The more experience he or she has, the more likely they will do a good job of getting the tumor OUT and avoiding cutting across all those nerve endings that cause pain. I can say from my experience that although it is a difficult procedure, the pain medicine made it so that I was able to handle the pain. You should never be in too much pain. Make sure you are your own advocate, and if while in the hospital you are uncomfortable, TELL them to up your pain meds or to check your chest tubes, to make sure everything is functioning properly (In my case, I'm really glad I told them that I was feeling pain because they checked my tubes and lo and behold they had inserted them incorrectly and they weren't draining properly... annoying but fixable, and I'm glad that I told them I was uncomfortable when I did).

Thirdly, AGE is on your side. I saw on your profile that you are 34 years old. Young people recover more quickly, that's just how it is. Our tissue is more elastic and our bodies can handle surgeries. I am 27 and had half my lung out. After about 2 months I could go out and live life pretty normally. After three months, I was able to run a few miles, bike over 15 miles and do more kinds of exercise than I had ever bothered to previous to my diagnosis. I'm not sure how long your recovery will take, but my guess would be that somewhere in the 3-month range you'll be able to start working out.

You will be losing your whole left lung, but the good news is that a lot of people on this site have lived long and full lives, having one of their lungs removed. Lung tissue is elastic and that means the more you work out and concentrate on your physical health, the better your lung capacity and breathing will be. What I've heard from people on this site who have had pneumonectomies, that after those few months of recovery they are able to do pretty much everything they could before, just that they're a bit more winded at higher altitudes and when walking up steep hills.

As for advice I have about the surgery, the things I did that made things better were: making a 'care package' for myself to take into the hospital (including a couple of my favorite kinds of foods cuz you can eat a day or two after the surgery, photos of people I love, books that make me smile and laugh), asking people visiting me to bring me good food (hospital food is AWFUL), and an IPod to listen to music. I also wrote myself a few things on a sheet of paper reminding myself that I wanted to have a positive attitude while recovering, that I was going to be patient with myself and my recovery. Those words came in handy when I read them later, esp. when I was frustrated because recovery can be slow.

I know it seems really scary right now but you can do this. The uncertainty is a killer, but it is do-able. Most people who have your surgery (and often those who are forty+ years older than you) recover quite well. Just remember to keep that positive attitude and my guess is that four months from now you will look back on this and feel a sense of accomplishment for having overcome such a huge life obstacle.

I wish you all the best and will be thinking of you on the day of your surgery.

Best
Liliana

By vertigo69
Posted June 20, 2009 at 5:15 pm
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I have had the unfortunate opportunity of having to deal with this disease for 6 1/2 years. Im also a family practice provider. What I have learned is how critical it is to be well educated about the disease. You will find that most physicians are not familiar with current literature concerning carcinoid in general. If your oncologist has not ordered an octreotide scan since you were diagnosed, you need one. These tumors can be very small, and not show up on traditional imaging studies like CT, MRI or PET scans. You should also routinely have a chromaganin A, Neurokinin A, and urinary 5 HIAA labs checked as these are markers specific for neuroendocrine tumors. I hope this information is helpful.

Welcome to Inspire!

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