Newly diagnosed with lung cancer. Never smoked. In shock....

Posted by aksinspringfield @aksinspringfield, May 29 12:03pm

hi all. my name is Amy. i am 56, non smoker, former triathlete, eat healthy.. etc..
had a high heart rate working out starting over a year ago. ignored it, as i thought i was just not in normal shape and i had reduced hard workouts because of hip pain. I developed a cough about 4 months ago. finally got a chest xray in late April… fast forward to now. stage 4.

first, i had no idea there was a "non smokers" lung cancer and that is could present with little or general symptoms.

i appreciate all of the advice on here about being patient- waiting is the worst! i have an A team of docs that i trust but they encouraged a second opinion, which isnt scheduled for 4 weeks.

any ideas on how to best prepare my body for chemo/immuno treatments? i am still working out and still eat pretty healthy. are there supplements , etc?

thank you
Amy

Interested in more discussions like this? Go to the Lung Cancer group.

Hi @aksinspringfield, I can imagine that the news of lung cancer came as a shock to you. There are several never smoker lung cancer members in the group like @olympia @llwortman @burrkay @sjones55 @marshall8318. It is possible. Whatever the cause, smoking, quitting smoking or never smoking, there are plenty of members who can offer tips on preparing for chemo and other treatments.

While we wait for others to chime in, here are a couple of related discussions you might wish to review:
– Robotic Lobectomy: What can I expect? What is recovery like? https://connect.mayoclinic.org/discussion/hello-from-the-bluegrass-state/
– Never Smokers & Lung Cancer https://connect.mayoclinic.org/discussion/lung-cancer-never-smokers/

I agree that being a patient-in-waiting takes plenty of patience. I like that you're taking this time to focus on being as healthy as you can be. Do you know when you'll be starting treatment? What treatment?

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Hi Amy-
So sorry to hear about your diagnosis, just know there is so much newer treatments today than just a few years ago. So stay positive and ask lots of questions.
Have your doctors done a lung needle biopsy of the tumor? If so, did they do a genomics or nuclear study of the biopsy to determine the type of mutation? In view of the timeline, I assume there has been no surgery on your lung.
My wife was diagnosed with two adenocarcinomas (1) 12 cm in right middle lobe and (1) 6 cm tumor in right lower lobe in May, 2015.
The Mayo thoracic surgeon removed both lobes in a VATS procedure after stage 3a diagnosis.
She had chemo as a just in case therapy…even though our surgeon was convinced that he had gotten it all!
She has been stage 4 since 2017 and is now on enhertu chemo.
The mistake made was not having a molecular study until 2016 when her cancer continued to grow after having had treatment with Opdivo therapy for the tumors which had reappeared and continued to spread… all the time thinking hers was the typical efgr mutation.
We found with the study of a needle biopsy that her mutation was a HER2 mutation and all along she had been treated for a typical EFGR mutation.
Bottom line….get a genomics study on the biopsy before the doctors give you any chemotherapy!
Keep your chin up. Stay strong. Lots of new science every day.
We find prayers help a lot!!!
Take care!

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Good morning Amy and welcome to Mayo Clinic Connect. I'm sure that this was a huge shock to you since you have never smoked. Hearing that you have cancer is a blow all by itself. I was 51 when I was first diagnosed and it is now 24+ years later. My cancer is different than yours.

Cancer has its own timetable, waiting to be the norm, your time is best spent doing exactly what you are doing. Exercise, but make sure that you walk when you get out of breath or begin coughing. Are you bringing up any blood?

Clean eating is the best and keeping busy until your next appointment. Have you had any bloodwork as yet? Other than a CT have you had an MRI or PET scan?

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Good morning Amy. Yes, it is a shock to get that diagnosis. Sorry to welcome you to the club.
Question: How did you go from an Xray for hip pain to a diagnosis of stage IV lung cancer? Usual procedure is CT scan, PET scan, then biopsies.
If you are awating biopsies ask the doctor TO MAKE SURE TO TAKE EXTRA TISSUE from the tumor so it can be typed genomically. You may qualify for many of the newer targeted therapy treatments.
Keep up your physical activity…It will keep you healthy for what lies ahead. Also patience, hard to come by, is needed as it can take a few months (me 4 months from discovery of tumor to surgery to starting on medicines). Crazy me but frozen Margaritas with my friends once or twice a week by the ocean was a mental godsend.

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Amy – My oncologist says most of his patients are either non-smokers or what he calls "casual smokers", those that smoked when out for drinks with friends or when they were in college, etc. It is scary to hear but you also have to know we have made tremendous strides in cancer treatment that the general population knows little about. To me, it's not hope, it's reality! Take time now to get the best care possible (Mayo is doable!) and put your trust in the professionals. Let us know how things are going; we've been there and we can help.

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Welcome to the group Amy! There are too many of us, diagnosed at a late stage, fairly healthy and took care of our selves for all those years!
Like others have indicated, make sure you have genomic/biomarker testing completed prior to starting any chemo or immunotherapy, and especially surgery. With you history, gender, and age, your cancer may be caused by a mutation that can be treated with a targeted therapy (pills with minimal side effects compared to other treatments). The biomarker testing needs to guide the treatment, it’s VERY important.
I was diagnosed just over two years ago, at 49, with an ALK mutation. I’m on a targeted therapy which has been successful. No surgery, no chemo, and immunotherapy is traditionally a bad decision for my type of lung cancer. I’m able to workout, bike, and do most of what I was doing prior to diagnosis, with some fatigue, and a little lung scaring.
There is real science based hope the ‘new’ lung cancer world. If your oncology team is recommending a second opinion, it’s a good idea, and will likely be worth the wait, if you can manage with the symptoms in the mean time.
Hoping for good news for you! Please keep us posted, Take care, Lisa S

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Hi Amy @aksinspringfield ,

My name is Juliette. I’m so sorry you to hear what you are going through. The waiting to get results and start a treatment plan is so hard.
At 45 I was ignoring some similar minor symptoms. I did hard workouts and had noticed my heart racing and I was struggling to keep a good pace running but thought I was just tired, or it was the heat, etc. I ate healthy and had always exercised. December if 2019 at my annual doctor visit I found out I was anemic and in an x-ray for a GI referral they saw the tumor in my right lung. The anemia turned out to be unrelated to the cancer – I was also diagnosed with celiac disease. I received a lung cancer diagnosis December 26, 2019.

I have had all my treatments and surgery at Mayo even though I live in Des Moines. You said your second opinion is in 4 weeks. I have learned to be my own advocate with appointments which is completely not my personality. Always kind and patient with whoever I am dealing with but persistent. Asking about cancellations, helping get records they need to review, etc. One of my initial appointments at Mayo was scheduled 3-4 weeks out but a nice scheduler offered to email the radiation oncology team and one of the doctors worked me in weeks sooner. Also, a cancer foundation near you may be able to help. Where I live Above and Beyond Cancer has a cancer center ran through an endowment that can get referrals for you for doctors. It is ran by an oncologist. You may have something like that where you live that can assist you.

I would also get connected with an oncology social worker. They are a wealth of information as to programs you may qualify for. The one I work with can help with disability applications if you decide to apply, dietitian, support groups, etc.

Enroll the support of a close friend or family member to find out about these things. They want to help and will love an assignment. My husband and best friend found these things for me, I was too overwhelmed to tackle it all.

I worked out throughout chemo and radiation. My oncologist told me it was good to continue working out, just not to work out to the point of being sore and being in recovery mode.

I have the EGFR Exon 19 mutation. As mentioned by others you will want genetic mapping done of your tumor biopsy if not already being done.

You asked about supplements. I recently saw an Integrated MD and wish I had gone to him sooner. Depending on your treatment plan some supplements interfere so just make sure you tell your oncologist what you are taking. My Integrated MD is the one that suspected celiac which I just got a diagnosis for at Mayo last month. They are helpful to look at the whole picture of your health instead of just one aspect. Mine worked at our local hospital for 30 years and supports traditional medicine. He has been a great help to me.

Please let me know if I can answer anything else.

Take care,
Juliette

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@marshall8318

Hi Amy @aksinspringfield ,

My name is Juliette. I’m so sorry you to hear what you are going through. The waiting to get results and start a treatment plan is so hard.
At 45 I was ignoring some similar minor symptoms. I did hard workouts and had noticed my heart racing and I was struggling to keep a good pace running but thought I was just tired, or it was the heat, etc. I ate healthy and had always exercised. December if 2019 at my annual doctor visit I found out I was anemic and in an x-ray for a GI referral they saw the tumor in my right lung. The anemia turned out to be unrelated to the cancer – I was also diagnosed with celiac disease. I received a lung cancer diagnosis December 26, 2019.

I have had all my treatments and surgery at Mayo even though I live in Des Moines. You said your second opinion is in 4 weeks. I have learned to be my own advocate with appointments which is completely not my personality. Always kind and patient with whoever I am dealing with but persistent. Asking about cancellations, helping get records they need to review, etc. One of my initial appointments at Mayo was scheduled 3-4 weeks out but a nice scheduler offered to email the radiation oncology team and one of the doctors worked me in weeks sooner. Also, a cancer foundation near you may be able to help. Where I live Above and Beyond Cancer has a cancer center ran through an endowment that can get referrals for you for doctors. It is ran by an oncologist. You may have something like that where you live that can assist you.

I would also get connected with an oncology social worker. They are a wealth of information as to programs you may qualify for. The one I work with can help with disability applications if you decide to apply, dietitian, support groups, etc.

Enroll the support of a close friend or family member to find out about these things. They want to help and will love an assignment. My husband and best friend found these things for me, I was too overwhelmed to tackle it all.

I worked out throughout chemo and radiation. My oncologist told me it was good to continue working out, just not to work out to the point of being sore and being in recovery mode.

I have the EGFR Exon 19 mutation. As mentioned by others you will want genetic mapping done of your tumor biopsy if not already being done.

You asked about supplements. I recently saw an Integrated MD and wish I had gone to him sooner. Depending on your treatment plan some supplements interfere so just make sure you tell your oncologist what you are taking. My Integrated MD is the one that suspected celiac which I just got a diagnosis for at Mayo last month. They are helpful to look at the whole picture of your health instead of just one aspect. Mine worked at our local hospital for 30 years and supports traditional medicine. He has been a great help to me.

Please let me know if I can answer anything else.

Take care,
Juliette

Jump to this post

Juliette
What a thoughtful and informative reply!
Thank you so much!
My sample is out for testing, which im learning is of utmost importance.
I hope to continue working, at least a little, and working out through this process . Exercise keeps my sanity in check.
Thanks for pointing me towards resources and for taking the time to respond

Did you have surgery to remove part of your lung? How had that impacted your exercise?

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@aksinspringfield

Juliette
What a thoughtful and informative reply!
Thank you so much!
My sample is out for testing, which im learning is of utmost importance.
I hope to continue working, at least a little, and working out through this process . Exercise keeps my sanity in check.
Thanks for pointing me towards resources and for taking the time to respond

Did you have surgery to remove part of your lung? How had that impacted your exercise?

Jump to this post

@marshall8318 (Juliette) mentioned oncology social work. That is an often overlooked service offered at large cancer centers. @aksinspringfield, you may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

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@aksinspringfield

Juliette
What a thoughtful and informative reply!
Thank you so much!
My sample is out for testing, which im learning is of utmost importance.
I hope to continue working, at least a little, and working out through this process . Exercise keeps my sanity in check.
Thanks for pointing me towards resources and for taking the time to respond

Did you have surgery to remove part of your lung? How had that impacted your exercise?

Jump to this post

I did have surgery April 2020 had a thoracotomy lobectomy of the lower right lobe after 30 radiation treatments along with 6 chemo treatments. First week after surgery could only walk 10 minutes on the treadmill at 2.0 but slowly worked my way up. 25 months later I do a spinning class, barre class and Zumba class every week. I can’t do the level I used to at those things but enjoy what I can do.

I have kept working part time as well. I like staying busy but have made more time for other things by working part time.

Take care
Juliette

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@marshall8318

I did have surgery April 2020 had a thoracotomy lobectomy of the lower right lobe after 30 radiation treatments along with 6 chemo treatments. First week after surgery could only walk 10 minutes on the treadmill at 2.0 but slowly worked my way up. 25 months later I do a spinning class, barre class and Zumba class every week. I can’t do the level I used to at those things but enjoy what I can do.

I have kept working part time as well. I like staying busy but have made more time for other things by working part time.

Take care
Juliette

Jump to this post

Great response…the Social Worker suggestion was overlooked by most of us but very good point! Thanks

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Hi Amy, this is Bob. Liz, my wife of 47 years, was diagnosed with Stage 4 NSC lung cancer in Feb of this year and the folks on this forum have been a god-send to us. Everyone here has been very supportive and willing to share pertinent experiences. They will help you focus on the important things during your journey of diagnosis and treatment.

Liz's symptoms were similar to yours, she developed a nagging cough that lasted several months and when she went in for her checkup, a CT scan of her lungs was ordered. That was when we found out that she had developed a large tumor in her left lung. Follow up MRI & PET scans revealed that the cancer had also spread to her brain, back and hips. First she received radiation treatment for the lesions in her brain which were essentially eradicated by the end of the treatment. She then began chemo, but the tumor in her lung grew larger after the first treatment and chemo was stopped. She is now receiving Intensity Modulated Radiation Treatment (IMRT) to the tumor in her lung to reduce the tumor's size.

You will learn that while cancer has some things in common across all of those inflicted, each person will have their own unique challenges and successes. Liz has had an especially rough time over the past few months and I pray that your experiences are more positive. Please feel free to share your concerns and experiences with others here, as they will be encouraging to some and others will be here to help you as much as you will allow.

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