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

Posted by aksinspringfield @aksinspringfield, May 29, 2022

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 Support Group.

@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

REPLY

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.

REPLY

My husband is scheduled for a lobectomy on June 13. He has an 8mm stage 1 biopsy proven tumor in his right upper lobe as well as several cloudy areas that the surgeon feels may evolve into cancer. My husband wasn’t a smoker so, like others, this is a shock as is the drastic surgery we are looking at. The tumor is deep in the lung according to what we have been told. In passing there was mention of a type of targeted radiation but that we were told can come with its own problems. My husband is 65 and super active - biker, skier etc.
We are looking for more information- first hand accounts on what recovery from a lobectomy and activities afterwards is like for people who are maybe sort of like him.
We have had very sporadic contact with our team due to various reasons. Right now we feel things are moving to fast. Any thought or comments as well as personal accounts would help. Thanks. Mara

REPLY
@corgimenow

My husband is scheduled for a lobectomy on June 13. He has an 8mm stage 1 biopsy proven tumor in his right upper lobe as well as several cloudy areas that the surgeon feels may evolve into cancer. My husband wasn’t a smoker so, like others, this is a shock as is the drastic surgery we are looking at. The tumor is deep in the lung according to what we have been told. In passing there was mention of a type of targeted radiation but that we were told can come with its own problems. My husband is 65 and super active - biker, skier etc.
We are looking for more information- first hand accounts on what recovery from a lobectomy and activities afterwards is like for people who are maybe sort of like him.
We have had very sporadic contact with our team due to various reasons. Right now we feel things are moving to fast. Any thought or comments as well as personal accounts would help. Thanks. Mara

Jump to this post

Hello @corgimenow and welcome to Mayo Clinic Connect. By some coincidence another member recently posted about a similar diagnosis and shock given she wasn't a smoker either. Because of the similarities in your husband's experience and hers, I have moved your post so that you may join her discussion and connect with her.

@aksinspringfield please meet @corgimenow who's husband has just had a similar experience with a non-smoking diagnosis.

What about the care do you feel is moving too quickly?

REPLY
@colleenyoung

@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/

Jump to this post

Mayo Oncology Social Workers are the best!

REPLY
@amandajro

Hello @corgimenow and welcome to Mayo Clinic Connect. By some coincidence another member recently posted about a similar diagnosis and shock given she wasn't a smoker either. Because of the similarities in your husband's experience and hers, I have moved your post so that you may join her discussion and connect with her.

@aksinspringfield please meet @corgimenow who's husband has just had a similar experience with a non-smoking diagnosis.

What about the care do you feel is moving too quickly?

Jump to this post

In response to the care question his questions on the portal are not seen by the people he is communicating with. He did get a direct email to communicate with his PA so that helps with questions. But the portal ones have gotten lost or the response takes so long that it is nerve wracking because more questions come up and the others are left unanswered. Even a quick response to a message that says “are you getting my messages “ is not answered.

He has accepted the diagnosis and surgery but was initially led to believe there would be a much less drastic outcome.

Last year he literally skied a million vertical at Vail. He’s an avid road biker and sailor. With disciplined attention to recovery instructions will this kind of cardio be possible in the future?

Thank you. Mara

REPLY

Hi Amy,

I was diagnosed December 15th 2021 and was in total shock. At the time, I was running 20 miles a week, playing tennis and was an avid yogi. I’m a 41 year old non-smoking mother of two young boys, have been active and eaten healthy my whole life. I had zero symptoms, my tumor was an incidental finding on a CT scan I had for a running injury. I had an upper right Lobectomy and completed 4 rounds of chemo about 6 weeks ago. I am running again, doing yoga (at home) and have begun to play tennis again. I will say it’s tough but I am giving myself grace and space to gain endurance back slowly.

Please feel free to reach out with any questions or to chat!

REPLY
@ginabilleter

Hi Amy,

I was diagnosed December 15th 2021 and was in total shock. At the time, I was running 20 miles a week, playing tennis and was an avid yogi. I’m a 41 year old non-smoking mother of two young boys, have been active and eaten healthy my whole life. I had zero symptoms, my tumor was an incidental finding on a CT scan I had for a running injury. I had an upper right Lobectomy and completed 4 rounds of chemo about 6 weeks ago. I am running again, doing yoga (at home) and have begun to play tennis again. I will say it’s tough but I am giving myself grace and space to gain endurance back slowly.

Please feel free to reach out with any questions or to chat!

Jump to this post

Hip hip hooray @ginabilleter

Good morning. I applaud your efforts on getting back your health! Moving forward, to me, is the only direction to move post-surgery.

Are there any "tips" that you can share that might help people waiting for surgery?

Thank you for posting!

REPLY
@merpreb

Hip hip hooray @ginabilleter

Good morning. I applaud your efforts on getting back your health! Moving forward, to me, is the only direction to move post-surgery.

Are there any "tips" that you can share that might help people waiting for surgery?

Thank you for posting!

Jump to this post

Yes @merpreb
I suggest working out/exercising up until the day of surgery. If you feel well enough, do it. Surgery recovery takes time so you want to keep it moving while you still can. Working out can be an outlet to help with your mental health as well as your physical health. After surgery, walk as much as you can, even if it’s just up and down the stairs or around the house. Then your surgeon can clear you for more exercise at your post op appointment.

REPLY
@ginabilleter

Hi Amy,

I was diagnosed December 15th 2021 and was in total shock. At the time, I was running 20 miles a week, playing tennis and was an avid yogi. I’m a 41 year old non-smoking mother of two young boys, have been active and eaten healthy my whole life. I had zero symptoms, my tumor was an incidental finding on a CT scan I had for a running injury. I had an upper right Lobectomy and completed 4 rounds of chemo about 6 weeks ago. I am running again, doing yoga (at home) and have begun to play tennis again. I will say it’s tough but I am giving myself grace and space to gain endurance back slowly.

Please feel free to reach out with any questions or to chat!

Jump to this post

Thank you!
Are you done with chemo or more to follow?
I just hot out of hospital last night- they took out lower half of left lung monday

I was able to walk a mile this am but it tired me.

Im now waiting on treatment plan

How is your heart rate now when exercising?
Thank you!!

REPLY
Please sign in or register to post a reply.