NSCLC

[lindovina0805]

I had my first NSCLC diagnosis in Oct. 2007 the 2nd one Noc. 2007. I actually had bilateral NSCLC.. I had both upper lobes removed 4 weeks apart and went into 3 months of Chemo. I had a lymph node involved by the second surgery which put the left lung at 2band the right 1b. I had my 3rd NSCLC diagnosis in 2016. I had a RLL wedge resection. Thats when i found i was KRAS+. I still experience been where the cut my 6 th rib in the first 2 surgeries.. I found also that i have a Genetic Mutation in my ATM Geno.. I know i am high risk for Breast and Pancreatic cancers but strange enough not for Lung Cancer (yet). You are your only protector for YOU... I have struggled through these years, keep after the American Cancer Society. Look in to local help. I wish you all strength and prayers to get through this awful disease...

Linda~

[Jferm]

Hi Linda, last month I had 2 nodules found incidentally one in each lung. In your case how were they able to know they were 2 Primaries vs Mets?

[lindovina0805 in reply to Jferm]

Good morning, they had done a biopsy on both nodules. the results came back they were like/cousins., they were able to do surgery. I followed up on the chemo for 3 months and was NED for 9 years. The third diagnosis was different again. surgery was still an option. Please have them bipopsy both. The yalso noticed on my PET scan that there wasn't a "trail" lite up where the cancer spread. Just one lymph node was found since it took longer to get the second one out even though surgeries were a month apart. You are your own advocate.

God bless you..

[Jferm in reply to lindovina0805]

Thank you for responding. I did get an EBUS on both. The result was Adeno for one and Benign for other. However, the surgeon who did biopsy wanted to wedge the benign nodule since the biopsy isn’t 100% and if confirmed benign was going to do Lobectomy on other side. My heart sunk bc he was the one who insisted on the EBUS bc according to him it is over 90% accurate and plus working on both lungs was unsettling. Do you recall the size and SUV uptakes were on the nodules?

[Denzie Moderator Volunteer]

Thank you for sharing your experience. I, too, have the ATM mutation I've had lung them breast cancers and now screen for pancreatic cancer Mine is a germline (born with it) mutation, my sister and one of my brothers both tested negative A good friend has the ATM mutation, he has had prostate cancer, then lung cancer, then pancreatic cancer His is an acquired mutation

Please consider participating in the Inherit Study. ATM is one of the mutations they are looking at. The Go2 Foundation that sponsors this page sponsors the study in conjunction with the Dana Farber Institute and the Addario Lung Cancer Institute

go2.org/wp-content/uploads/...

Please know that there is an ATM Facebook page. It says it's for breast cancer but there are many there that have lung and/or pancreatic cancer. If you have trouble finding it send me a pm.

[lindovina0805 in reply to Denzie]

thank you for the information. My ATM mutation is germline as well. Fortunately my 2 sisters and brother are negative as well as my 29 yr old daughter. My 24 yr old son has yet to be tested. I will look into the web address in your reply and see what i can find. Cancer has been a big part of my life and my families lives. I go in December to have mt CT scan and Pulmonologist visit. I go to Georgetown Hospital/ Lombardi Cancer Center. I was high Breast an Pancreatic Cancers in the RED zone.. Any more information you can spare, please pass it on..

Linda

[lindovina0805 in reply to Denzie]

i have attempted to go to that web page but doenst show much. am i on correct page?

[Denzie Moderator Volunteer in reply to lindovina0805]

this is a link for the ATM page. Again it says breast cancer but feel free to ask about lung cancer. Many will share their experience.

facebook.com/share/g/1DQLQo...

[ThePurplePlace in reply to lindovina0805]

Try this link for the INHERIT study inheritstudy.org/

[lindovina0805]

I have never been thru screening for Pancreatic Cancer, i wasn't aware they could do that? Do the CT scan the area?

[Denzie Moderator Volunteer in reply to lindovina0805]

Yes. I had an abdominal CT. Do look up symptoms of pancreatic cancer. I think my doctor did the CT as a baseline picture of the pancreas. Do learn the symptoms of pancreatic cancer.

[lindovina0805 in reply to Denzie]

Thanks for the link. i filled out the questionnaire and hope to hear back. i havent spoken with anyone with my same mutation. Dr.s that I see were not bery familiar with it and i know they would need to be the ones watching it ..It scares me that I feel like a cancer magnet...