Ellen B. Posted September 26, 2005 Share Posted September 26, 2005 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 , 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. Quote Link to comment Share on other sites More sharing options...
Connie B Posted September 26, 2005 Share Posted September 26, 2005 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. Best wishes and we'll be here when you need someone. Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 26, 2005 Share Posted September 26, 2005 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 Quote Link to comment Share on other sites More sharing options...
Kasey Posted September 26, 2005 Share Posted September 26, 2005 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 Quote Link to comment Share on other sites More sharing options...
francesbean Posted September 26, 2005 Share Posted September 26, 2005 Hallo! Nice to meet you Ellen. Ellen is my second name and most friends call me that Hope to hear more about Henk. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 26, 2005 Share Posted September 26, 2005 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 Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted September 26, 2005 Author Share Posted September 26, 2005 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. Quote Link to comment Share on other sites More sharing options...
Ry Posted September 26, 2005 Share Posted September 26, 2005 Welcome Ellen, I am glad you found us. Keep us posted once you see the oncologist. Rochelle Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 26, 2005 Share Posted September 26, 2005 PS Betty there's lots of people from the Netherlands here in Minnesota. Donna Quote Link to comment Share on other sites More sharing options...
shineladysue Posted September 26, 2005 Share Posted September 26, 2005 Welcome Ellen, I just want to say hello and let you know that we are happy to have you with us. There is a lot of knowledge to be gained at this site, as well as support and prayers. Tell Henk to hang in there and know that in most cases there are lots of options. Sue Quote Link to comment Share on other sites More sharing options...
Patkid Posted September 26, 2005 Share Posted September 26, 2005 welcome!! Quote Link to comment Share on other sites More sharing options...
Kaffie Posted September 26, 2005 Share Posted September 26, 2005 Welcome, Keep us posted, hope you stay around and reap the benefits this group has to offer Information, Support, Prayers Never feeling like you are alone in this battle Kathy Quote Link to comment Share on other sites More sharing options...
Kaffie Posted September 26, 2005 Share Posted September 26, 2005 Welcome, Keep us posted, hope you stay around and reap the benefits this group has to offer Information, Support, Prayers Never feeling like you are alone in this battle Kathy Quote Link to comment Share on other sites More sharing options...
ma's kid Posted September 26, 2005 Share Posted September 26, 2005 Hi Ellen and welcome to both you and Henk. I know you will find lots of helpful info and great people here. Please keep us posted on how Henk is doing and what the oncologist recommends as far as treatment. Many prayers Love and light Libby Quote Link to comment Share on other sites More sharing options...
jang Posted September 27, 2005 Share Posted September 27, 2005 Welcome Ellen...glad you found us. Quote Link to comment Share on other sites More sharing options...
bunny Posted September 27, 2005 Share Posted September 27, 2005 Ellen, welcome. You'll get so much information and support here, you won't believe it. I am better on the support part, so just know that I am keeping you and Henk in my thoughts. Keep us posted. xoxo bunny Quote Link to comment Share on other sites More sharing options...
SBeth Posted September 27, 2005 Share Posted September 27, 2005 Hi Ellen and Welcome. I'm very sorry to hear about Henk's diagnosis, but we are here for you and always happy to have you come back. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 27, 2005 Share Posted September 27, 2005 Ellen,welcome to our support family.There are many knowing and caring people here. There are many here defying the odds and statistics.Lung cancer is scary but not an automatic death sentence.There are many options with which to fight it. Attitude,Knowledge,and a good team of drs. will go a long way. Quote Link to comment Share on other sites More sharing options...
Maryanne Posted September 27, 2005 Share Posted September 27, 2005 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 ' Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted September 27, 2005 Author Share Posted September 27, 2005 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 Quote Link to comment Share on other sites More sharing options...
Botley Posted September 27, 2005 Share Posted September 27, 2005 Dear Ellen, So glad that you have found our wonderful board! We are here for you and Henk! You are in our thoughts and prayers! Take Care, Botley & Mother Quote Link to comment Share on other sites More sharing options...
Kasey Posted September 27, 2005 Share Posted September 27, 2005 Well, Ellen, I think maybe you and Henk should look around for another group of docs. Holland should certainly be large enough that there is somewhere to go for another opinion, right? It certainly is not a good start. Let us know what you decide. Kasey Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted October 1, 2005 Share Posted October 1, 2005 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 Quote Link to comment Share on other sites More sharing options...
Nushka Posted October 1, 2005 Share Posted October 1, 2005 Welcome Ellen. I hope you and Henk get some answers quickly. Another opinion might be a good idea. Glad you found us and hope you will keep in touch. Best of luck. Nina Quote Link to comment Share on other sites More sharing options...
Ellen B. Posted October 1, 2005 Author Share Posted October 1, 2005 Thank you all for posting! You're so supportive, we are very happy to 'be' here! Henk has an appointment to see a pulmonary doctor (in stead of an oncologist???) next Monday and a second opinion doctor on Tuesday! Leslie, the website you found was a hit! It was exactly the right website on the right time! Wow, thanks! I'll keep you posted! Ellen. Quote Link to comment Share on other sites More sharing options...
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