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Thread: Non-smoker Female Diagnosed with Small Cell Lung Cancer

  1. #1
    Newbie New User
    Join Date
    Jun 2018

    Non-smoker Female Diagnosed with Small Cell Lung Cancer

    Hello everyone,

    I'm new to the board as my mother was recently diagnosed with extensive staged small cell lung cancer. She's meeting the disease head on and we're already going through the standard prescribed treatment, starting with 6 cycles of chemo.

    At the same time, father and I have been been perplexed by someone with my mother's profile getting small cell lung cancer. She's an Asian in her late 50's, never smoked in her life and have no relevant occupational hazard. The doctors mother saw were all perplexed as well and professed that her case is extremely rare. This was why we went through multiple rounds of second opinions as all the doctors were unsure and wanted confirmation. Currently, the team that is treating my mom and University of Chicago Medical Center admittedly has had no experience with someone of my mom's profile.

    Does anyone have experience with small cell lung cancer similar to my mother's profile? I would love to hear from you and learn where you received treatment. Since there are so many factors that go into development and treatment of cancer, father and I would love to consult with doctors or facilities who have experience with my mom's profile. Maybe they have insights we're not aware of.

    Thank you all in advance!


  2. #2
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Hi Jeff,

    I am very sorry to hear of your mother's diagnosis. Unfortunately, there are those who develop the disease who have had no connection to smoking. Although smoking is the leading cause there are other factors the can play into the development of this disease: asbestos exposure, genetics, radiation exposure and in other cases doctors admit they simply do not know the cause. We have had several members here diagnosed with small cell and never smoked.

    I have had 2 family members who have had small cell lung cancer. My husband had non small cell. Both of my family members had chemo as radiation tends not to be effective on small cell. I really cannot comment further as I am in Canada and I see you are in the States. I can say where my aunt received treatment is considered one of the best in Canada/world and they did their best for her but sadly she lost her battle as it spread to her brain. I will let my fellow American moderators comment on the facilities in the States.

    If you have other questions, everyone here will do their best to answer them. This is a very supportive group of people here. We are here to listen and support you. Take care and let us know how your mom and you are doing ok?

    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED

  3. #3
    Newbie New User
    Join Date
    Jun 2018
    Thank you Jodie for the kind words! It looks like your husband is winning his challenging battle. That is great and best of luck to you and your family.

    It has been a trying time as I feel helpless watching my mom go through this. I'm with her every step of the way but I also want to provide her with encouragement and hope as well.

    I know one of the things she really gravitates to is the fact that she doesn't fit the profile of someone who develops small cell lung cancer. She brings it up a lot with various doctors/family members/friends. Not that there is anything wrong with the treatment she's receiving now, but I feel that finding a hospital/doctor who has had experiences with treating SCLC patients who don't smoke would completely put her mind at ease. If there is a new perspective on her treatment plan, great. If not, at least it gives her an extra level peace of mind as she focuses on her treatment and recovery.

    So, if anyone on this board has had relevant experiences, please share! I'd really appreciate it.

    Thank you all.


  4. #4

    I'm sorry that your mother's illness has brought you here. While small cell lung cancer is more closely associated with smoking than other types of LC, it is not unheard of for non-smokers to get SCLC. The most famous case I can think of is Jill Costello, a rower for the University of California Berkeley rowing team.

    With regards to your mother, you could try a second opinion at a NCI Cancer Center. You could also contact the National Comprehensive Cancer Network Small Cell Lung Cancer panel members or an advocacy group like Bonnie J. Addario Foundation. I can provide some links if you need them.

    Hope that helps.
    At the time - 46 yo male, non-smoker
    Sept 2012 - DX - One tumor NSCLC Squamous Cell Right Upper Lung
    Oct 2012 - TX - Treatment similar to Pancoast Tumor - Pre-operation radiation and chemo (5.5 weeks of IGRT and 3 cycles of Cisplatin and Etoposide)
    Dec 2012 - Surgery - Remove RUL, Surgical Pathology Report Adenocarcinoma T2N0M0
    Now - Wait, watch, & pray

  5. #5
    Newbie New User
    Join Date
    Jun 2018
    Hi Mike,

    This is the first I've heard of the groups you mentioned. I will definitely look into them!

    In the meantime, would you mind sharing the links you have? I just don't want to miss anything. The National Comprehensive Cancer Network Small Cell Lung Cancer panel sounds especially interesting.

    Thank you so much!


  6. #6

    As requested, here are some links for you.

    Here is a listing of all the US National Cancer Centers.

    National Comprehensive Cancer Network has a lot of good information. Each cancer type has its own panel of experts. I can't provide you a direct link to the panel member list because you have to create a login for the website. Here is a link to the list of cancers that the NCCN provides guidelines for. Scroll down to SCLC, click on that link, click on the guidelines link, on the second or third page of the guidelines there is a list of the panel members (name and hospital). From that you should be able to google their contact information.

    Finally, Bonnie J. Addario Foundation supports those affected by LC. You might be able to find some support here.



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