Please join INHERIT Study: Join the... - Lung Cancer Support

Lung Cancer Support

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Please join INHERIT Study

Miranda_GO2 profile image
Miranda_GO2Partner
8 Replies

Join the INHERIT Study to help us better understand the genetic risk for lung cancer, and what can be done for prevention and treatment.

Our goals are to learn more about:

-Inherited or genetic risk for developing lung cancer in certain people or families

-Changes in lung cancer tumors in people with increased genetic risk

-Ways to better predict lung cancer risk for certain groups of people

Who can join the INHERIT Study?

You may be eligible to join our research study if you have had lung cancer or a family history of lung cancer, AND one or more of the following:

-During the course of genetic testing, you have a change (called a mutation) in the EGFR or HER2 gene, or in other genes such as TP53, BRCA1 or BRCA2, CHEK2, or ATM, and others. Please note this says genetic testing which is different than biomarker testing on a tumor.

-You have a relative who has a mutation in the EGFR or HER2 gene, or in one of the other genes listed above.

-You have more than one first-degree relative or relatives in more than one generation of your family with primary lung cancer*.

-You have been diagnosed with one or more cancers in addition to primary lung cancer*, or you have had more than one primary lung cancer* in your lifetime.

Note: This study is currently only available in the US. Here is the link to learn more: inheritstudy.org/

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Miranda_GO2 profile image
Miranda_GO2
Partner
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Denzie profile image
DenzieModeratorVolunteer

I am so excited to learn about this. We've had multiple people in multiple generations with lung cancer in my family.

Miranda_GO2 profile image
Miranda_GO2Partner in reply toDenzie

I'm also really eager to see what we learn from this study to better understand risks.

CT20232024 profile image
CT20232024

I completed the initial information maybe a week ago. I haven't heard anything. Do you know how long it takes to hear back from them? Does one have to be local- can't remember if the information stated this? I lost my father and two sisters to lung cancer.

Local onc thinks I have a "slow growing lung cancer." CT scans convey possibility of adenocarcinoma. 3rd recent scan in July - 2 in 2023 and 2 several years prior to that.... changes...

Miranda_GO2 profile image
Miranda_GO2Partner in reply toCT20232024

Hi there. You don't have to be local but you do have to live in the US to participate. Since the study is new the study team is small but ramping up. I don't have a time estimate for when they will get to you because I don't know what order you are in the queue but they will get to you.

I'm so sorry to hear of the loss of your father and two sisters to lung cancer. Have you had genetic testing? Sounds like they are monitoring your nodules, if you want to talk through this our Helpline team is here to support you. You can reach us by email at support@go2.org or by calling 1-800-298-2436. The Helpline team is separate from the study but we help support people who face lung cancer as a family member as a patients.

CT20232024 profile image
CT20232024 in reply toMiranda_GO2

Thanks so much for all this info! I figured the research team needs time yet... As far as support, online forums have been very informative which is all I'm looking for right now while I'm waiting to see what's going on. I do believe I have some form of adeno though... changes are obvious from 2015 and 2016 to 2023... I may get in touch if indeed diagnosed which likely wouldn't be until mid-summer or so.... Thank you!

Genetic testing... I had some when diagnosed with DCIS Grade 3 with comedo necrosis in 2020. Not sure how extensive the testing was though it covered quite a bit from what I remember. Only thing that showed up for me was colon cancer risk which I already was considered high risk for and already was undergoing more frequent screenings based on personal history of tubular adenoma. My brother died of kidney cancer and my mother a primary brain tumor soooo prevalent cancer in immediate and extended family (aunts, uncles, grandparents on both sides). One of my sisters had rare neuroendocrine small cell lung cancer. Her neurosurgeon spoke with her oldest son -I was present- telling him he and his brothers need genetic testing. Genetic counselor told me all of this has been lifestyle (lots of smoking though not my mom) and coincidence?

Miranda_GO2 profile image
Miranda_GO2Partner

This is the reason this study is so important and another layer to a prior study that was done looking at EGFR T790M germline mutations and lung cancer risk. This study is broader and asks about all germline (genetic mutations), so much we need to figure out when it comes to determining risk beyond the known risk factors that exist currently.

CT20232024 profile image
CT20232024

Just an update.... I heard from INHERIT late last week. Once we connected things have moved quickly! I already have my blood collection kit from them, completed some questionnaires and have a phlebotomist coming to the house next week!!

Miranda_GO2 profile image
Miranda_GO2Partner

Wonderful! Thank for the update and for participating. I am beyond eager to see what the study finds!

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