1. < Lung Cancer

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.

56899t52 | @56899t52 | Sep 6, 2022

A PET scan should show if it is possibly cancerous with the FDG uptake and SUV reading. Have you been tested for a mutation? That is very important too, because if you have one, there is targetted therapy in a daily pill for that. Just writing from my experience. Good luck to you, I know how stressful this is.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 6, 2022
In reply to @marcia115 "I had Lung cancer 1 year ago and they went in and took it out, I..." + (show)
@marcia115

I had Lung cancer 1 year ago and they went in and took it out, I just had my
cat scan which you have every 6 months, and now they see something in my same
lung, so this week I go for a pet scan. I do go to Mayo for all my doctors. I just hope
it is scar tissue in my mind. I am not thinking about it till I have the test on wed. How
does it happen you have had 5 lung cancers? I have had a lot of melanoma too much on
my face and legs, but I was a sun worshipper so I could understand that. what makes it
keep growing in the lung?

Jump to this post

Marcia, I believe your question "How does it happen you have had 5 lung cancers?" was meant for @merpreb who has Multifocal Adenocarcinoma of the lung. She explains in this discussion:

- Multifocal Adenocarcinoma of the lung, continual recurrences https://connect.mayoclinic.org/discussion/multifocal-adenocarcinoma-of-the-lung-continual-recurrences/

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overcomercynth | @overcomercynth | Sep 10, 2022
In reply to @dedehans "Cynth....for starters, please find a thoracic oncologist affiliated with a hospital or clinic that deals specifically..." + (show)
@dedehans

Cynth....for starters, please find a thoracic oncologist affiliated with a hospital or clinic that deals specifically with cancer....Don't know where you live but Mayo (Rochester MN and Jacksonville Fl) Moffitt (mine) Tampa, FL, MD Anderson (Houston), MGH (Mass general) Boston, Memorial Sloan Kettering (NYC) John's Hopkins (Baltimore) are just a handful of the best. I would do so asap. It is worth the effort. Please let us know what you decide to do. We all know how scary it is but taking action helps ease the helplessness feeling. We are here to be supportive and helpful. hugs to you

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Did see my oncologist yesterday Sept 9th. PET scan showed its contained in my upper right lung. Surgery is the plan of action so waiting on surgeon to call with date. Have no breathing problem but keeps coughing a bringing up mucus. Any suggestions of where I should go from here? Need to get started on this right away. Think I’ve cried too many tears now.

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1 reply
dedehans | @dedehans | Sep 10, 2022
In reply to @overcomercynth "Did see my oncologist yesterday Sept 9th. PET scan showed its contained in my upper right..." + (show)
@overcomercynth

Did see my oncologist yesterday Sept 9th. PET scan showed its contained in my upper right lung. Surgery is the plan of action so waiting on surgeon to call with date. Have no breathing problem but keeps coughing a bringing up mucus. Any suggestions of where I should go from here? Need to get started on this right away. Think I’ve cried too many tears now.

Jump to this post

Unfortunately waiting for surgery dates is common. The thoracic oncologist must review your information with the thoracic surgeon, the anesthesiologist, others on your team....then set a date according to the surgeon's schedule....it can be weeks. I hope you are with a cancer facility/hospital....re the coughing, perhaps your doctor can prescribe something for your coughing.....also something to ease your anxiety. I am sorry but waiting for everything is common. I was 2 months from diagnosis to surgery.

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millard | @millard | Sep 11, 2022

I had a lung needle biopsy 10 days ago .
I have written down the advice on the genomic and or nuclear study before a suggestion of
Chemo; not sure that will happen yet.
The pet scan showed I have many nodules in my lungs that are growing. New ones since the last
pet scan.
They finally were able to do a needle biopsy on one nodule and found it to be cancer.
What type is unknown to me at this time; I hope to know this when I meet with my oncologist next week.
The doctor feels the cause of the many nodules, is from the mastectomy I had a year ago.
Thank you all for sharing your experiences, so helpful to me .
Donna Patterson

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 24, 2022
In reply to @millard "I had a lung needle biopsy 10 days ago . I have written down the advice..." + (show)
@millard

I had a lung needle biopsy 10 days ago .
I have written down the advice on the genomic and or nuclear study before a suggestion of
Chemo; not sure that will happen yet.
The pet scan showed I have many nodules in my lungs that are growing. New ones since the last
pet scan.
They finally were able to do a needle biopsy on one nodule and found it to be cancer.
What type is unknown to me at this time; I hope to know this when I meet with my oncologist next week.
The doctor feels the cause of the many nodules, is from the mastectomy I had a year ago.
Thank you all for sharing your experiences, so helpful to me .
Donna Patterson

Jump to this post

Hi Donna, how are you doing? May I ask what you learned at your appointment with the oncologist? Is it lung cancer or breast cancer that has spread? Or something else?

REPLY
millard | @millard | Sep 25, 2022

Hi Colleen, My appointment was a little over a week ago. At that appointment
I was told that I have metastatic breast cancer stage 4. that has gone into my lungs.
The doctor said I will be taking a chemo pill .
She also put me on a hormone blocker. Called Exemestane 25mg.
I am still waiting for the approval of a chemo pill.
Once I take this pill for three months, she will order a Pet Scand to see if the chemo pill is
stopping the progression of cancer.
The doctor is waiting for an additional mutation study which will not be available. until
mid-October.
This study, as I understand, will identify more information on the chemo pill??????
The mutation study is for--EFGR, which I do not understand.
The waiting is horrible to get the approval for the first chemo pill.
This is all that I know at this time.

REPLY
1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | Sep 26, 2022
In reply to @millard "Hi Colleen, My appointment was a little over a week ago. At that appointment I was..." + (show)
@millard

Hi Colleen, My appointment was a little over a week ago. At that appointment
I was told that I have metastatic breast cancer stage 4. that has gone into my lungs.
The doctor said I will be taking a chemo pill .
She also put me on a hormone blocker. Called Exemestane 25mg.
I am still waiting for the approval of a chemo pill.
Once I take this pill for three months, she will order a Pet Scand to see if the chemo pill is
stopping the progression of cancer.
The doctor is waiting for an additional mutation study which will not be available. until
mid-October.
This study, as I understand, will identify more information on the chemo pill??????
The mutation study is for--EFGR, which I do not understand.
The waiting is horrible to get the approval for the first chemo pill.
This is all that I know at this time.

Jump to this post

Those biomarker tests take far too long to come back. It sounds like the doctor is making sure the lung cancer isn’t driven by a non-breast cancer mutation, EGFR, ALK, etc. There are pills to treat those specific types of cancers that can be very effective with minimal side effects (called targeted therapy). Waiting for those tests is a good idea, if you are tolerating the symptoms of the cancer, even though the waiting can be so difficult.
Wishing you the best, and speedy results, Lisa

REPLY
millard | @millard | Sep 26, 2022

9/26/22
hi Coleen, thank you for your very helpful remarks. It helps me not be too anxious.
I have called my doctor's nurse and am waiting for her response.
She will need time to find out why I have not heard from the pharmacy.
I will let you know what I find out; thank you again.

REPLY
1 reply
millard | @millard | Sep 26, 2022
In reply to @millard "9/26/22 hi Coleen, thank you for your very helpful remarks. It helps me not be too..." + (show)
@millard

9/26/22
hi Coleen, thank you for your very helpful remarks. It helps me not be too anxious.
I have called my doctor's nurse and am waiting for her response.
She will need time to find out why I have not heard from the pharmacy.
I will let you know what I find out; thank you again.

Jump to this post

Hi Lisa, I just sent a response to who I thought was Coleen, thinking it was her responding to me.
Sorry about that; I m just not paying attention right now.

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