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.

@tedvoelker

Amy I was diagnosed last year with stage 4 backs. I had hip pain for 6 months prior to this and felt I perhaps injured myself planning pickleball. At 66 years I have always been active, running marathons in the distant past and a non-smoker. You are obviously a strong person and will do well. I also ate healthy foods but would recommend looking into Dr William Li, has some good information. Take care.

Jump to this post

Stage 4 non small cell lung cancer not backs. Stupid spell check.

REPLY

Amy I was diagnosed last year with stage 4 backs. I had hip pain for 6 months prior to this and felt I perhaps injured myself planning pickleball. At 66 years I have always been active, running marathons in the distant past and a non-smoker. You are obviously a strong person and will do well. I also ate healthy foods but would recommend looking into Dr William Li, has some good information. Take care.

REPLY
@spiceygrandma01

Thank You so very Much sweet Juliette!! I was Just diagnosed April with 3.1 Stage Lung cancer, which was supposedly sent to the Mayo Clinic for diagnosis. I went through a rough emotional panic attack-level anxiety at first.
When I realized that my Only Family wouldn’t be over to help Me, I got Angry at the Cancer. It doesn’t belong inside Me and I WILL GET RID OF IT. I’m refusing chemo at the local cancer hospital because I want to be seen by a great Our Lady of the Lake, under Mayo Clinic umbrella, in Zachary, Louisiana. I was already planning to move in my girlfriend’s house with her anyway. I’m doing colloidal Silver shots atm. I just heard about the RSO treatment. Has anyone heard anything about Rick Simpson Oil. Gin*

Jump to this post

Hello @spiceygrandma01, Being diagnosed with cancer is likely one of the scariest things that we'll face, the anxiety is intense and expected. You're fortunate to have such a good friend that you can live with. Hopefully she'll be able to help you in many ways, including just having a good laugh when you need that too.
Non-traditional therapies can be quite beneficial, but please make sure you see a medical oncologist too. You posted to a message string based on lung cancer in non-smokers. There are some types of non-smoker lung cancers that are caused by gene mutations.
Did you have a biopsy? Do you know if your samples were sent for biomarker testing?
Do you have an appointment at your chosen hospital yet?

REPLY
@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

Thank You so very Much sweet Juliette!! I was Just diagnosed April with 3.1 Stage Lung cancer, which was supposedly sent to the Mayo Clinic for diagnosis. I went through a rough emotional panic attack-level anxiety at first.
When I realized that my Only Family wouldn’t be over to help Me, I got Angry at the Cancer. It doesn’t belong inside Me and I WILL GET RID OF IT. I’m refusing chemo at the local cancer hospital because I want to be seen by a great Our Lady of the Lake, under Mayo Clinic umbrella, in Zachary, Louisiana. I was already planning to move in my girlfriend’s house with her anyway. I’m doing colloidal Silver shots atm. I just heard about the RSO treatment. Has anyone heard anything about Rick Simpson Oil. Gin*

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.

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?

Jump to this post

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

REPLY
@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

Jump to this post

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.

REPLY
@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.

Jump to this post

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

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?

Jump to this post

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.

REPLY
@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.

Jump to this post

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
Please sign in or register to post a reply.