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.

@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?

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Hi Marcia- By this time you should have had your PET scan. what did it show?

Colleen gave you a link to my Multifocal adenocarcinoma lung cancer. I now have a 6th lung cancer which involves 2 lesions that have grown from pure ground glass to partial solidity. I begin SBRT (very focused radiation for people who can not have any more surgery) next Monday. I go to Mass General in Boston, which is the major top hos[ital in New England. Each lesion is considered a primary cancer lesion and not a metastasis. They don't spread. They are indolent, very, very slow growing, and can be in more than one lung at a time. They can come and disappear too. As of October 3rd I will have been a lung cancer survivor for 25 years!

Nobody really knows why cancers come back for sure. My guess is that an original cancer had spread and just took its time getting to where it finally shows up. Also, for people who never smoked, there is a saying: "If you have lungs you can get lung cancer." There probably isn't a place in or on a human body that can't become cancerous. But that's for a different discussion.

How are you feeling?

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@merpreb

Hi Marcia- By this time you should have had your PET scan. what did it show?

Colleen gave you a link to my Multifocal adenocarcinoma lung cancer. I now have a 6th lung cancer which involves 2 lesions that have grown from pure ground glass to partial solidity. I begin SBRT (very focused radiation for people who can not have any more surgery) next Monday. I go to Mass General in Boston, which is the major top hos[ital in New England. Each lesion is considered a primary cancer lesion and not a metastasis. They don't spread. They are indolent, very, very slow growing, and can be in more than one lung at a time. They can come and disappear too. As of October 3rd I will have been a lung cancer survivor for 25 years!

Nobody really knows why cancers come back for sure. My guess is that an original cancer had spread and just took its time getting to where it finally shows up. Also, for people who never smoked, there is a saying: "If you have lungs you can get lung cancer." There probably isn't a place in or on a human body that can't become cancerous. But that's for a different discussion.

How are you feeling?

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I am so sorry for what you have been going through, must be a nightmare for you.
I don't have the link, I might have trashed it, I am good at that.
Tomorrow I go for the Biopsy. I will let you know.
Stay Strong! I know it's hard but I am sure you are in good hands.

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@marcia115

I am so sorry for what you have been going through, must be a nightmare for you.
I don't have the link, I might have trashed it, I am good at that.
Tomorrow I go for the Biopsy. I will let you know.
Stay Strong! I know it's hard but I am sure you are in good hands.

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Marcia- Being told that you have cancer for this first time and subsequent times are certainly very scary. A lot of support and understanding of what my job is in dealing with it helps keep the nightmares away. But it took many years. The more that I have become familiar with something the more in control I feel, even if it's partial control.

A long time ago someone told me that my job is to be a good patient. I've learned that this means many things but most of all I need to be in control, help decide what options are best for me along with my doctors, then make that decision work for me.

Does this make sense?

REPLY
@merpreb

Marcia- Being told that you have cancer for this first time and subsequent times are certainly very scary. A lot of support and understanding of what my job is in dealing with it helps keep the nightmares away. But it took many years. The more that I have become familiar with something the more in control I feel, even if it's partial control.

A long time ago someone told me that my job is to be a good patient. I've learned that this means many things but most of all I need to be in control, help decide what options are best for me along with my doctors, then make that decision work for me.

Does this make sense?

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Yes, that makes a lot of sense, you are in control. This is my second go-round and I
am not too much in control, plus I have Essential Tremors which does not help me,
only makes me shake more. I will let you know when my day is done, I don't have to be there
till 9;30 A.m.

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@marcia115

Yes, that makes a lot of sense, you are in control. This is my second go-round and I
am not too much in control, plus I have Essential Tremors which does not help me,
only makes me shake more. I will let you know when my day is done, I don't have to be there
till 9;30 A.m.

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I have slight essential tremors too. I don't have them every day but sometimes they are so bad I can't write.

Best of luck

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@merpreb

I have slight essential tremors too. I don't have them every day but sometimes they are so bad I can't write.

Best of luck

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my tremors are always there since I was about 19 or 20 but, in the last 5 years they
are worse and I lost my writing, it is in the family on my dad's side.

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@merpreb

Marcia- Being told that you have cancer for this first time and subsequent times are certainly very scary. A lot of support and understanding of what my job is in dealing with it helps keep the nightmares away. But it took many years. The more that I have become familiar with something the more in control I feel, even if it's partial control.

A long time ago someone told me that my job is to be a good patient. I've learned that this means many things but most of all I need to be in control, help decide what options are best for me along with my doctors, then make that decision work for me.

Does this make sense?

Jump to this post

Excellent reply Merry. Feeling that you are captain of your destiny so important.

REPLY

Make sure you get genetic testing on the tumor to see if you have a mutation that can be targeted by a pill as your first line of treatment. I have the egfr growth mutation and take Tagrisso once a day. It can melt the cancer and keep it from progressing.

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