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

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?

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?

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.

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?

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.

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

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?

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

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*