My husband was just diagnosed with a typical carcinoid tumor of the lung.......

[Klukie]

We have not seen the oncologist yet (next week). He had a PET scan yesterday to see if it was anywhere else. From what I have been reading this is the best possible type of lung cancer one can have, so I am very optimistic in that regard. I am however terrified that it isn't the primary source. Anyone here familiar with this type of cancer? I would really appreciate any advice, including things I should be asking the doctors. He is a 35 year old healthy non-smoker, so this whole thing has just blindsided us.

[Lucinda]

1. I've found the cancer.org site helpful in the past. Here is a link to their section

on Lung Carcinoid Tumors. You may have seen it already but I thought i'd post this for you. My experience is with Lymphoma, so I don't have much specific info for you. I'll be keeping you both in my thoughts this week. I know how hard it is to pass the time until you can talk to the doctor.

http://www.cancer.org/docroot/CRI/CRI_2_3x.asp?dt=56

[Klukie]

5. Thanks for the info and your thoughts.....

I will take all I can get. This just plain sucks. I posted an update down thread. Thanks again.

[Forkboy]

2. Not familiar with that kind of cancer, but I just wanted to pass along some good wishes.

It's real scary until you can actually talk to a doctor and get some real info. Until then your mind messes with you, but once you get some actual info it's not as scary. You get a game plan and that occupies your mind, and that's a big help.

Best of luck to you both, and keep us updated.

[Klukie]

6. Thanks for the good wishes.....

you are so right about needing the info. It is almost as if I can have more control over it if I fully understand it, although I am learning real quickly how some things are just beyond our control. On the other hand, my husband prefers to remain in the dark. I guess we all cope in different ways. I posted an update down thread. Thank you.

[noiretextatique]

3. here's some info

http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_lung_carcinoid_tumor_56.asp

:hug: i know you are both scared now, but as you get more information, it will be more manageable. Du is a great for support, so please keep posting here.

[Klukie]

7. Thanks for your hugs...... we can use them.....

You are right about it becoming more manageable. In three weeks time we have gone from shock to disbelief to worry and anticipation to timid acceptance and currently to pro activity. What a god awful ride. Thanks again for your support. I posted an update down thread.

[Klukie]

4. Update......

His PET scan results have showed no distant metastasis, but it showed an uptake in the lymph nodes near the mass. He will be having a lobectomy in a week or so. The surgeon said that he would lose his lower left lobe and that if the mass is in the upper at all, he will lose the whole lung. It all sounds so scary but in reality he just won the lottery of all lung cancers. I will say that I am nervous about the reliability of tests when it comes to determining whether this lung tumor was the primary cancer. I pushed to have him get an ocreotide scan (this week) because these scans apparently are better at locating carcinoid tumors than a PET/CT scan. Anyone know anything about this test or the reliability of tests in general? Thanks.

[LeighAnn]

8. Here's a good resource

If you call the Bloch Cancer Foundation they will match your husband up with a survivor of the same kind of cancer that he can call on for support

1-800-433-0464

Here's their website

http://www.blochcancer.org/ with a TON of resources including the book "Fighting Cancer" online.

Very sorry for your troubles and hope you get through it all soon.

~*Peace*~

[noiretextatique]

9. that sounds pretty good

as these things go. i had the same luck with my breast cancer, so i'm glad to hear he hit the lottery :) i don't know much about the reliability of scans, but i did have a PET scan and it was all clear. i had clear lymph nodes too, so i wasn't as concerned about distant metastasis.

a cursory web search indicates you are right about the ocreotide scan. i don't know much about the reliability of tests...sorry. hang in there and keep us posted :hug:

[anneboleyn]

11. Klukie, I am very empathetic. I was 36 when I was diagnosed with an extremely rare bone cancer

Your husband may be going through a sort of shock right now. Being diagnosed changes one's sense of the world and everything in it. I am very sympathetic to your experiences dealing with this as a couple (my husband is in your position) and to your husband's feelings as a new "cancer patient." Lung cancer can be truly terrible yet his can be treated effectively with surgery. This is wonderful news and something in which you can take a great deal of comfort. Though the possibility of losing a lung is major, he will be well and with you for many years.

I also had a series of scans when I was diagnosed eighteen months ago -- multiple CAT scans and two MRIs (pelvis and -- chest region I believe). The scans were accurate (no metastasis). I would believe that your husband's clean scans are excellent news. Between the PET and the CAT scan, if the cancer had spread to organs or bones, it would have shown up (I believe, based on my experience and the experiences of friends/family). I would also get the other scan done since it is more precise for your husband's specific type of cancer and I imagine that clean results on this scan as well will also help both of you feel better.

Please know that our hearts are with you both. Please keep us updated as well, when you can. I know the whole experience is a mind-numbing whirlwind.

I don't know if you have read her book or heard of her, but I read Kris Carr's book Crazy Sexy Cancer right after I was diagnosed. She was diagnosed with a very rare cancer in 2003, Stage IV. The book is sort of targeted at women (I would say so) but I think you might appreciate her attitude about living with the disease and her tips for staying sane and organized (like having a medical notebook in which to compile everything -- scan results, etc.) It certainly helped me.

[PassingFair]

12. Klukie -- is your husband doing OK?

My sister-in-law was just diagnosed with
Stage 3A lung cancer and had her first PET/CT scan
today...so we don't know how bad it is.

It sounds similar to your husband's condition
based on your description.

They have told her that they will be using a
combination of radiation and chemo on the
tumor and surrounding area, but they haven't
suggested surgery yet. Maybe they are hoping
to reduce the tumor before they look at surgical
options.

We are worried sick about her.

[Tab]

10. I don't know about that particular kind, but I do know it happens

For instance, Andy Kaufman, the comedian, died in 1984 at age 35 from lung cancer, although he never smoked. Because he never smoked, and was such a practical joker, it took quite a while for people to believe that it really happened, but it really did happen. He was the same age as your husband. I certainly hope your husband doesn't die, and I'll give you all the good wishes that I can, but this kind of non-smoking cancer does happen - cancer can flare up in most any organ. Typically lung cancer is self-inflicted (both my aunt and uncle smoked like chimney's and died from it), but it doesn't have to be. It could be exposure to another chemical, or carcinogen, or just perhaps he's pre-disposed to it.

I know it's scary not knowing why it started - particularly that kind - if he had, say, stomach cancer you'd probably be more comfortable just thinking it was localized to that - but we all associate lung cancer with smoking, so I understand why you think it might have originated somewhere else and spread, but it really doesn't have to have happened that way. It could have started right where you found it, and with any luck you can treat it and/or remove it and that will be the end of it.

But, yeah, I and everyone else here know it's scary, and the early part is the worst - when you DON'T know that the treatments will be, or what the extent is, or anything like that.

All I can suggest is hold on, be there for him, and come here for support and we'll be there for you.

- Tab