Hello all you brave people--In April I started a thread inquiring about genetics of lung cancer and what family members have done about their own health concerns re LC. The response was great and from one response I learned about IELCAP. I also learned of another research project that seeks to further the science about this frightening disease. I am now reporting my own results from the International Early Lung Cancer assessment and am alerting interested family members to the second study. I looked into these opportunities because my father, a smoker, died of NSCLC and my 58 y/o brother, a never smoker, was just diagnosed with NSCLC and is in treatment.
My low dose CT scan of my lungs was normal and a follow-up scan will be in one year. As a former smoker this brings me much comfort. I feel safer and I feel proactive. I encourage any smokers or former smokers to go to ielcap.org.
The second study investigates the genetics of LC and requires the patient to provide medical information and the family members to provide personal histories and a DNA swab. Easy as pie. The contact is Alicia Salkowski, MS at Wayne State University, phone 800-527-6266.
Hope this information is of interest to you.
Susan
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TESTING FOR FAMILY MEMBERS
- By Farmerswife
- Posted June 15, 2009 at 5:28 pm · 11 replies
- In Family members and caregivers
- Shared with the public
- Edited June 15, 2009 at 6:54 pm
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- By CareyG
- Posted June 15, 2009 at 6:04 pm
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Thanks so much for this! I'm going to go read about this right now. If anyone is trying to get to the website, it's actually at http://www.ielcap.org/, not .net.
Carey
- By Farmerswife
- Posted June 15, 2009 at 6:57 pm
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Hi CareyG--You are very welcome and thank YOU for the correction! If I can answer any questions for you, please contact me.
Susan
- By jgaynor711
- Posted June 16, 2009 at 9:50 am
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Thank you so much for sharing this information. I'm definitely going to see if I can join the study!
Julia
- By ION43
- Posted June 17, 2009 at 11:23 am
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Thanks! I, too, will check into joining the study.
- By candigrl63
- Posted July 30, 2009 at 11:18 pm
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hello. didnt you say in a previous reply that you have a small nodule also? i was wondering if it is still there and would you happen to know if its borders are smooth.
thanx
maryann
- By patticakes721
- Posted July 31, 2009 at 8:32 am
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Hello: Our family is currently doing the study at Wayne State. Anything to help find out about this terrible disease. A lot of paperwork but worth it.
- By Farmerswife
- Posted July 31, 2009 at 3:00 pm
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Hi MaryAnn--Yes, my CT scan reported a nodule smaller than 1mm. The study radiologist, per study standards, reports this as a "normal finding" and thus recommends a new scan 1 year from now which is normal protocol. Because I want to be more vigilant than that, I plan to discuss this with my doctor, and to see a pulmonologist at 6 mos. or so.
I feel that I can't lose here. If I don't have lung cancer, great--but I will scan 1x per year. If I do have lung cancer I am catching it at its earliest phase and believe I can avoid the pain and suffering my brother is experiencing post treatment, or an early death like my father.
Both of the studies I joined further the knowledge of this terrible disease and eases my pain over the sadness of the stories we share. I encourage everyone reading this to look at what study--as a patient or a family member--you can join.
Take care, Susan
- By Unraveled
- Posted August 7, 2009 at 1:15 pm
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I didn't even know lung cancer had a family history. Now I can add that to the list BEFORE the breast cancer and melanoma! It's amazing how much the public doesn't know.
Thank you.
- By Farmerswife
- Posted August 20, 2009 at 10:14 pm
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Unraveled--The public doesn't WANT to know. Look at all the stupidity spouted in these health care debates!
We just need to keep informing and then inform some more. And learn from each other.
Boy, people are sure opinionated and loud about it when it doesn't affect them. I guess I'm annoyed at that stuff today. (Thanks for listening.)
Susan
- By misself
- Posted August 20, 2009 at 10:42 pm
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Question,what about family members of patient who haven't smoked cigarettes but smoked marijuana for a period of time?Is there any concern about their risk?AndiB
- By Farmerswife
- Posted August 20, 2009 at 10:56 pm
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Misself--I am not an expert. My response to your question would be that a careful look at the family's history with cancer would be warranted. It isn't the "what was smoked" question that is most important, it is the cancer in the gene pool that would be important to my way of thinking.
The question you raise is a good one--I would ask it of an ielcap.org site near you.
Susan
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