Hello All,
I just found this group. I am a 47 y/o female diagnosed 2 years ago with an uncommon form of lung cancer called a Pancoast Tumour. This particular type of lung cancer has a very poor prognosis due to the fact that it remains asymptomatic for a long time and, therefore, is not very often discovered in time. I was diagnosed with NSC Stage 3 due to spread into the chest wall and ribs.

At the time of diagnosis it was deemed inoperable due to the location spread (against the spinal column). After 6 weeks of radiation and an aborted attempt at chemo (very, very sick & hospitalizad) it had "shrunk" enough to attempt resection.

The two thoracic surgeons that performed the operation did not know whether or not they would be able to remove the tumour until they were in the operating room. I didn't know until I woke up what they had done.

They removed the tumour, a section of the chest wall and 4 ribs. A long, eventful recuperation ensued including another week in the hospital with chest tubes to remove a litre of fluid from the site.

They knew I would have some nerve damage from the surgery but it wasn't as extensive as they thought it might be. After I recuperated I am left with no feeling in my left torso and axilla, a distorted upper thoracic spine, limitations to my breathing and fatigue but I have full use of all my limbs and no evidence 19 months later of any recurrance. You'd never know on casual meeting that I ever had anything wrong

Since treatment I have been trying to find another person with the Pancoast tumour diagnosis to no avail. It's very lonely not to have anyone to identify with.

I am glad this group is here.

Laurene, what a wonderful testimony to hope! Thanks so much for adding your story here and giving us all a ray of sunshine. My wife, Lucie, was dx last Oct. with NSCLC, Stage IV, and has undergone radiation on three bone met sites and two chemo treatments. Dec. and Jan. were lost to hospitalization for infections and dehydration, then recovery. We start chemo again next week. So happy to hear your good news. Right on! Don

_________________
72-yr old, married 47 yrs. Wife Lucie diag. 10/02 NSCLC (adeno carcinoma) w. multiple bone mets (skull, rib, upper spine, left hip and right fibula); non-smoker.

Radiation: 10-12/02 (spine, fibula); 03-04/03 (hip); 06/03 (sacrum); 07/04 (rib); 12/04 (skull); 04-05/05 (right fibula - recurrence).

Chemo: (Carboplatin/Taxotere), 02-05/03 - effective in reducing tumors; 07-12/04 (Navelbine) to treat recurrence in other lung, lymph nodes, rib - effective in reducing tumors; 08-12/05 (Navelbine/Gemzar) to treat recurrence in hip sacrum, spine, rib, shoulder, and liver - held everything stable; Alimta 2-4/06 - no effect; Carboplatin/Taxol/Avastin,5-9/06 - effective in reducing tumors.
Zometa monthly for bone strength.

Staph infection, systemic, 12/02 - second port-a-cath installed. Bilateral pneumonia, 08/03. Septic staff infection, congestive heart failure, 09/06 - deceased

I am 11-yr. prostate cancer survivor, Stage II (two bouts). Also 9 yr. heart bypass surgery survivor.

Avatar Pic: Don & Lucie, 02/06

Laurene,

What a wonderful story, everyones cancer is so different...but it affects us all at heart the same way...I just love to hear a story as wonderful as yours.. That will make those doctors question those statistics and hopefullly give inspiration to the next person who enters into their office looking for hope and faced with a similar situation...We all know that attitude is so important I hope that God blesses you with many more healthy years!!!

Thank you for sharing your inspirational story with us....

Laurie

Dear Laurene,

I am so glad to hear your doing so well for all you have been through. This isn't a cake walk that's for sure!!!

I knew of a couple people that had a pancoast tumor, but I'm sorry to say, they are no longer with us. This was a few years ago though. Another lung cancer that is not all that common is BAC (Bronchial Alveolar Cancer), this is a form of Adenocarcinoma, and not easy to treat either. Little is known about BAC like Pancoast Tumors.

I had my left lung removed, along with two ribs, and two cancerous lymph nodes and a few extra's to be on the safe side 7+ years ago. I still have numbness in that area and from what I am told I will forever!!! (small price to pay to be here)! I agree with you as well, that you wouldn't know to look at me that I was a lung cancer survivor of Stage IIIA-B.

I hope you will find some information here that might help you and if not, I know you'll find a lot of wonderful people that will be very supportive and understanding to your concerns.

Warm and Gentle Hugs,

_________________
Warm and Gentle Hugs,
Connie B
Date Dx.d, 7/21/1995, Age 43, Adenocarcinoma, Stage IIIB, had 3.4cm tumor and three cancerous lymph nodes.
7/25/1995 had Left Lung Removed along with several lymph nodes.
9/9/95 Started Chemo (VP-16/Cisplatin), & Radiation (36 treatments). Cancer Free.
8/11/2003 CT Scan found 4mm Nodule Right Upper Lung. Did PET scan & Nodule Lite up. Also found a Tumor in my Left Atrium (Heart)
8/21/03 Open Heart Sugery for Myxoma Tumor in Left Atrium. During heart surgery (3) surgeons checked 4mm nodule & agreed it did not appear to be cancerous.
11/2004-CT & PET scan, nodule still there 6mm will watch.
4/2005-CT, Nodule still there and has grown to 8mm will do another CT in 9/2005. Waiting & watching nodule.
9/2005 CT Nodule has shrunk to 5mm. Doctor's feel nodule could be scar tissue.
2/2006 Having Shortness of Breath problems.
4/2006 CT, nodule 5mm No Change.
11/2006 CT scan no change in Nodule.
4/26/07 Results of CT scan shows I have another Noudule. Now have two nodules, one is 6-7mm & the new one is about 3mm.
9/2007 CT shows 3 nodules all mm in size. First 2 have no change in them. New one is very small. Repeat CT in 6 months.
12/11/07 Still NED
5/7/08 CT (right lung) (nodules watch) two new nodules I now have 5 nodules. Will watch via CT scans.
10/08 CT Scan showed 1 nodule 6mm has grown to 1.2cm.
5/22/09 CT Scan (awaiting results)
7/4/09 PET Scan (3 nodules in left lung are now 1.4c.m in sizes.
8/13/09 Did Bronhcoscopy
8/18/09 NOT Cancer, no cancer found.
Next PET Scan Oct 2009.

READ MY STORY @ http://www.lungevity.org/l_community/vi ... hp?t=13224

Lost my Father age 56(1970), Mother age 66 (1987), and Sister age 43 (1988) all to Lung Cancer
AVATAR is in Iowa @ the Presidential Cancer Forum