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Ellen B.

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Hi all,

My name is Ellen, I'm Dutch.

My friend, Henk (71), is diagnosed 9/14 having NSCLC, stage III (we don't know about A of B), a pancoast tumor.

Dr. (a lung-specialist) says the tumor isn't operable, due to location and growth onto (or into???) the vertebra.

Henk will be seeing an onc. tomorrow, to decide what to do next: chemo, radiation or both.

We are very upset that there is no possibility of an operation. Looks like a death sentence to me!

I hate the LC, but I like this board very much. We also have a 'board' in Holland, but Holland is a small country and there are only a few people writing in that board.

So, thank you for 'listening'! I'll be back!

Ellen.

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Welcome Ellen.

I'm happy to hear you like our Board. We're pretty proud of it too! I'm sorry to hear about Henk, but I can assure you of one thing, we have a few people right here that will give you much needed hope.

DonnaG, and Kasey will be here to share there stories with you. :wink:

Best wishes and we'll be here when you need someone.

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Pancoast, yes that's right up my alley, Kasey and mhutch1366 ( MaryAnn) also had pancoast tumors.

Usually they start treatment with chemo therapy and radiation, that shrinks the tumor so they can do surgery. How are Henk's PFS's ( pulmonary funtion studies) , does he have severe COPD or Emphysema. If he PFStudies are decent perhaps a second opinion is in order.

Welcome to our family, please keep us posted on how Henk is doing. Donna G

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Well Ellen, here I am! I was diagnosed with a pancoast tumor stage iii. I still am not sure if it was an a or b. Please read my story in the MY STORY forum. I was 'inoperable' also. But I kept going ...4 opinions...until I got a surgeon who was willing to operate. mhutch also had the same surgeon. She is a 5 year survivor and Donna G is soon an 8 year survivor. So you see, there are folks who are living LONG lives after the diagnosis of pancoast tumors.

I don't know what options you have where you live - the Netherlands. Donna, mhutch, and myself all had radiation and chemo and then surgery followed up by more chemo. Keep looking!

We are all here to support you and Henk.

((()))to you and Henk,

Kasey

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A hearty welcome, Ellen! Glad you found us. Please do keep us posted. Sounds like the lung cancer has spread beyond the lung and that is one reason why surgery is out. Surgery is done if the doctor feels he can get all the cancer. This is not possible if it has spread. Chemo and radiation are the usual treatments then.

Not a death sentence. There are many on this board with Henk's condition that are surviving. My wife is Stage IV (lots of metastasis in her body) and she is three years from diagnosis. So hold onto the hope. Looking forward to your posts. Don

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Wow!

Thanks for your replies!

Henk isn't able to 'write' himself, he is having a lot of pain in his shoulder due to the tumor. He's on oxycontin for the pain. But he also wants to thank you for the replies.

Donna, Henks heart and condition are good and his PFS's are oke. He has some Emphesema, but not severe. The 'only' reasons they don't want to operate are the location of the tumor and the fact that the border of the tumor is laying against the vertebra.

Kasey, I don't know if there are many differences between the treatment in Europe and in the USA.

Thanks all of you, I'll keep you posted!

Ellen.

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Hi Ellen,

Welcome here,

Sorry to hear the news about your husband. You have found a wonderful site here full of people who are very knowledgable, caring and supportive.

Let us know what the Onc. says,

I will pray for some good news.

Hang in there. Things will get better.

Maryanne

'

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Thank you all for your support! You are wonderfull!

Frank, I don't think Henk has a good team of doctors.

This afternoon, he had an appointment to see a radiologist and an oncologist for the first time.

Well, the radiologist was present, but not the oncologist.

And the radiologist said that he needed the assistance of the oncologist to decide on the chemo+radiation.

Henk doesn't have the name of the onco. The radiologist called the pulmonary doctor who made the appointment, but the man was on a vacation.

So, Henk didn't see the oncologist and we have to wait....! What do you think of that?(':roll:')

Ellen

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Welcome, Ellen.

Poor Henk! It's so frustrating and disheartening when things go wrong with doctor's appointments. Hope the next time, Henk will have a better experience.

I used Google to search for oncogists in the Netherlands and found this page about a lung cancer conference and program there. many lung cancer specialsts a mentioned - perhaps some are near Henk or could make referrals.

http://imedex.com/announcements/elung05.asp

Looking forward to getting to know you,

Leslie

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