I have BAC lung cancer and I'm looking for others!

Hi, I have BAC lung cancer and I'm looking for other BAC people who want to discuss their experiences. My goal is to form a network of BAC diagnosed people who want to make a difference by contributing their surgically removed BAC cancer tissues and giving a history on who had lung cancer in their families. As this data base grows, our rare cancer will be studied under ONE state of the art hospital in LA, CA. Are you interested in hearing more? Our rare cancer is increasing and I will not sit back and do nothing. I never smoked. Both my dear parents died from lung cancer. Please respond if you are interested in making a change. Thank you.

I have never smoked either. I too would like to find a cure, or fight for the cause. My Grandmother died from lung cancer, but she smoked. I am only 30 and have 3 small children. I dont know what to do. One doctor has suggested Tarciva wich I recieved today. The other suggest poss surgery, then the tarciva. I want someone to help as well. Please let me know how I can help........

 

Melissa

Hi Melissa, Thank you for wanting to do something about BAC. I live in LA, CA. and I have just started looking for people like us with BAC who want to come together to have their tumor tissues and family history studied. This might sound crazy, but I have met with a head geneticist and head of the thoracic surgery who is in many specific research projects for lung cancer. I have come to the decision to try and "collect" BAC people who want to offer their BAC tissues and family history of lung cancer, to be researched by this great team. After we have collected enough people, these Doctors will work with us to help get our cancer studied. BAC is a rare cancer, with only 4 to 5% of lung cancers being BAC. To make matters more complicated, there is a strong indication that it could be inherited. They don't know enough at this point and that is exactly why we need to give them a network of people to study. The only way this BAC is going to get ATTENTION AND RESEARCHED, is to be pro active and organize. I have two boys 16 and 22 and a husband. I love them to death and want to be around for a long time. I will get more specific details from the Doctors soon and will send it out to all. Are you still interested in joining? Thanks-Linda

I had surgery for BAC Lung Cancer October, 2008.  My rt upper lobe was removed and I was blessed with no lymph node involvement.  I had no symptoms.  I had a EBT CT test done in 2005 for my heart and the lung was done at the same time.  There was scar tissue seen and my doctor sent me to a pulmonologist to f/u annually.  The 3rd year there was a change.  The pulmonologist wanted me to have a bx by an interventional radiologist and I went back to my family physician and discussed my misgivings about doing a bx when surgery was imminent.  He agreed with my concerns and sent me to a surgeon and the rest is history.  I am 63 y/o and smoked for maybe 5-6 years approx. 40 years ago.  My oncologist said he considered me a non smoker.  I am a retired ultrasound tech working contingent. I have live in the country for 23 years  and we had well water until Dec, 2008.  Three women on my road (18 homes) have had lung cancer and I am the only survivor.  One lady found her lung cancer in 4th stage.  She thought she had pneumonia.  This lady told me about the product "Iron Out" to clean toilets and wash white clothes.  My well water had sodium and chloride that ws 7x objectionable and double average arsenic levels. Until we got city water I used chlorox in my dishwater to clean my dishes.  I am investigating info. on Iron Out and am trying to get the path report of my neighbor.  I had an uncle who retired from the Navy because he was dx with lung cancer and died shortly after in 1950.  He was a smoker.  Other than that there is no other family history of lung cancer.  I am very interested in finding the culprit of my lung cancer. 

Thanks, Potsy

I have stage 1A BAC. It was spotted and diagnosed as a "scar or something 3 1/2 years ago after a CT scan for diverticulitis.It was 8mm and I was told not to worry about it and live my life even though I had already been thru bilateral mastectomies and have a strong family history of cancer, although no lung cancers.  I am 56 and smoked casually for 6-8 years 23 years ago.

This last April I had another bout of diverticulitis and another CT scan. Surprise! Ground glass nodule is now 1.6cm. Pulmonary guy (the one who said "go live your life"), was still not real concerned. My  regular Dr. was and sent me to a surgeon who said, "I don't care what it is, but if it's growing however slow...it needs to come out".  So 5/29/09, I had a thorocotomy and lower left lobectomy, there were no lymph nodes involved, no signs of metastasis. The nodule was close to the plura wall tho.NASTY surgery! Mastectomies were like hangnails compared to that.

2 oncologist opinions...no chemo now.

I can run, jump and play again now, even got back on the racquetball court.

I am very hurt by the predjudice towards lung cancer by people who think we all smoked and did it to ourselves.

I'm game for trying anything. I was a guinea pig on Tamoxifen back in 92-96 to see if it was effective in preventing breast cancer. It held mine off for 7 years. But I have a BRCA2 mutation and so does my younger sister who also has had bilaterals. We have lost 4 maternal aunts, mother and grandmother and 1 first cousin to breast cancer.  I am the first with lung cancer.