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Old 08-10-2006, 08:22 AM   #1
Join Date: Aug 2006
Location: Cherry Hill, New Jersey
Posts: 6
plumb HB User
Surgery for stage lV NSCLC

My sister-in-law (age 45) diagnosed with stage lllB in May. Tumor found above clavical in neck with further testing revealed primary lung cancer. Sloan Kettering clinical trial with large doses of Tarceva and IV chemo with Carboplatin. After 2 rounds tumor found on adrenal gland now considered stage lV. treatment stopped and she was moved on to Alimta. Drs. wanted to add Avastin too but insurance co. wouldn't pay for it. 2nd round of treatment is this Tues. She has always been told inoperable. Through a relative she contacted a Dr. at John's Hopkins that has done surgery with radiation on late stage pts. and has had some success. She sent all of the info. to him. The surgeon wanted to see her right away and made special arrangements to see her this Fri. Has anyone heard of anyone having a pneumonectomy etc.. with stage lv?

Old 08-10-2006, 03:04 PM   #2
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Join Date: Mar 2005
Location: Santa Barbara, California
Posts: 609
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Re: Surgery for stage lV NSCLC

Sorry to hear aboout your sister and no most doctors will not do surgery for Stage IV NSCLC. That being said when my mom also stage IV NSCLC learned she had it I did major research on late stage lung cancers. Most doctors say surgery will not help: however I have found a few stories of people that found that mavrick surgeon that said " Ok I will do surgery" and as a result these people were still alive years later to tell their stories, One is a woman that had Mesothelioma and they all told her she could not be cured, they could not do surgery etc yet she did not stop until she found a doctor willing to remove the tumors from her lung..well 12 years later she wrote a book about it and I guess has spent the years touring and speaking about it. The book is at my mom's and I can not recall her name but next week can see if I can find the book.

On the internet I found a story about another late stage lung cancer patient that also refused the " No we do not do surgery on that stage" she too found a surgeon and he did lung resections twice and it had been a number of years and she was still alive.

My personal opinion as to why stage IV lung cancer patients do not survive long is that the doctors refuse to be aggressive in the treatment. It seems the long term survivors are those that found a doctor willing to treat it in an aggressive fashion, willing to take a risk. With things like cyberknife out there I do not see why they couldn't do surgery on your sister then zap that met with cyberknife. Will it save her life? Only God knows that answer but I would think it could buy her more time then most stage IV lung cancer victims get.

I have heard of a doctor somewhere on the east coast that is treating stage IV aggressively and his patients are surviving longer.Maybe it is the same doctor? Anyway being about the same age as your sister I would meet with that doctor and see what he has to say and if it looked like it would buy me a few more years then most I would go for it as there are so many drugs in clinical trials now that who knows what will be available in 5 years but maybe it could be something that could control the cancer or cure it. I know if I was stage IV I would be thinking what have I got to loose? life , yes but the cancer is going to take that verses what could I gain?..once again my life. It sounds .like a big risk but what are your options? My hats off to this doctor for thinking stage IV patients are worth trying to save!

Best of luck to your sister. Let us know what she decides as no matter what all the prayers she will get from people here on this site will help. JanMarie

Last edited by Janmarie2; 08-10-2006 at 05:02 PM.

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Old 08-10-2006, 05:05 PM   #3
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Janmarie2 HB User
Re: Surgery for stage lV NSCLC

The woman that wrote the book about surviving mesothelioma is Margie Levine and when I looked her up I do see that she has since died but she was a 14 yr survivor because she took the risks she did in treatment as did the surgeon that helped her. JanMarie

Old 08-11-2006, 07:15 AM   #4
Join Date: Aug 2006
Location: Cherry Hill, New Jersey
Posts: 6
plumb HB User
Re: Surgery for stage lV NSCLC

Thank You for the info. my sister-in-laws appointment was cancelled. The hospitals review committee shot the surgery down. We all knew it was a longshot and unconventional (surgery, radiation & chemo at stage lV) but we were still hopeful. We will see how she does on the Alimta. 2nd round this Tues. and CT 3 weeks from now. The Avastin is still on hold- insurance co. won't budge. my sister-in-law is still running around with her kids (7yr. old and 5yr old twins) and trying to stay positive but it is hard. My dad died of lung cancer 7 years ago so I know all to well where this is headed if something doesn't start to work soon. I try to keep those thoughts at bay and only give love and support. Thanks again for responding.

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