Celebrating 25 years of lung cancer

Posted by Merry, Alumni Mentor @merpreb, Sep 25, 2022

Hello to all of you.

I think that a lot of you know my story. I was diagnosed with lung cancer 25 years ago. My first cancer was a different type of lung cancer that I have now. It was a single NSCLC lesion that grew very quickly.

My second lung cancer was 10 years later and it was called multifocal adenocarcinoma lung cancer. Briefly, it is an NSCLC but grows at a very very slow pace and there can be more than one lesion at a time and/or in more than one lobe at a time.

A week from now I will be going to Mass General Hospital to be treated for my 6th lung cancer. It includes 2 lesions and one is very close to my heart. I will be treated with SBRT- a type of targeted radiation that is a lifesaver for people who can not have more surgery. With multifocal adenocarcinomas, each lesion begins as ground glass and is not considered a metastasis but a primary lesion.

On October 3rd I will also be celebrating my 25th anniversary of lung cancer. I started a blog. You will see a 5-year absence from writing due to my time mentoring for Mayo and Covid and other life interruptions. But it is time to return now and to do both-mentor for Mayo and write.

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My blog is https://my20yearscancer.com/

I will have approximately 40 minutes of radiation a day for 5 days. I worked out a schedule with my radiologist that is best for me. I selected 5 straight days so I wouldn't have to go back and forth from my state to MA.

I feel that in being the Mentor for this brave and wonderful group I also need to share my journey. I don't know if these will be my last lesions or if there will be more. I hope that you will come along with me as I fight my 6th battle with Lung Cancer.

Thank you
Merry

Interested in more discussions like this? Go to the Lung Cancer Support Group.

I'm sorry about the news you're receiving. In an earlier post, you mentioned that your tumor tested positive for the EGFR mutation. You could (should) ask your oncologist if Tagrisso (Osimertinib) might not be an alternative to chemotherapy. Tagrisso is now recommended as adjuvant treatment, to prevent recurrence for patients with EGFR exon 19 deletions or exon 21 L858R after successful surgical removal of the tumor. (There are other flavors of EGFR mutations, perhaps yours isn’t an exon 19 deletion or exon 21 L858R, although these are the most common.) Adjuvant treatment is additional cancer treatment given after the primary treatment (such as surgery) to lower the risk that the cancer will come back.

Your oncologist might prefer to use chemotherapy as a first-line adjuvant therapy but the clinical trial for Tagrisso as adjuvant treatment was not limited to that; it was testing the use of Tagrisso in early-stage EGFR-positive lung cancer “following complete tumour resection with or without adjuvant chemotherapy.” It would certainly be interesting to learn if your oncologist plans to recommend Tagrisso after first-line chemotherapy adjuvant therapy.

Tagrisso also reduces the risk of the spread of the cancer to the brain or spinal cord.

Here is a link to the FDA approval for Tagrisso as adjuvant treatment:
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-osimertinib-adjuvant-therapy-non-small-cell-lung-cancer-egfr-mutations
And here is a link from AstraZeneca (the maker of Tagrisso) about the results of a clinical trial using Tagrisso as adjuvant treatment.
https://www.astrazeneca.com/media-centre/press-releases/2022/tagrisso-demonstrated-5-year-median-disease-free-survival-in-the-adjuvant-treatment-of-patients-with-egfr-mutated-lung-cancer.html
Although exon 19 deletion or exon 21 L858R are the common EGFR mutations, another study showed that “Osimertinib demonstrates activity in patients with uncommon EGFR-mutations, and especially for G719X-compound mutations.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9271433/ )

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I do not doubt for a second that you will survive and thrive in ways that are best for you. Wherever you are on this current round of cancer, I send you positive energy hugs!!!

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@lijda

I'm sorry about the news you're receiving. In an earlier post, you mentioned that your tumor tested positive for the EGFR mutation. You could (should) ask your oncologist if Tagrisso (Osimertinib) might not be an alternative to chemotherapy. Tagrisso is now recommended as adjuvant treatment, to prevent recurrence for patients with EGFR exon 19 deletions or exon 21 L858R after successful surgical removal of the tumor. (There are other flavors of EGFR mutations, perhaps yours isn’t an exon 19 deletion or exon 21 L858R, although these are the most common.) Adjuvant treatment is additional cancer treatment given after the primary treatment (such as surgery) to lower the risk that the cancer will come back.

Your oncologist might prefer to use chemotherapy as a first-line adjuvant therapy but the clinical trial for Tagrisso as adjuvant treatment was not limited to that; it was testing the use of Tagrisso in early-stage EGFR-positive lung cancer “following complete tumour resection with or without adjuvant chemotherapy.” It would certainly be interesting to learn if your oncologist plans to recommend Tagrisso after first-line chemotherapy adjuvant therapy.

Tagrisso also reduces the risk of the spread of the cancer to the brain or spinal cord.

Here is a link to the FDA approval for Tagrisso as adjuvant treatment:
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-osimertinib-adjuvant-therapy-non-small-cell-lung-cancer-egfr-mutations
And here is a link from AstraZeneca (the maker of Tagrisso) about the results of a clinical trial using Tagrisso as adjuvant treatment.
https://www.astrazeneca.com/media-centre/press-releases/2022/tagrisso-demonstrated-5-year-median-disease-free-survival-in-the-adjuvant-treatment-of-patients-with-egfr-mutated-lung-cancer.html
Although exon 19 deletion or exon 21 L858R are the common EGFR mutations, another study showed that “Osimertinib demonstrates activity in patients with uncommon EGFR-mutations, and especially for G719X-compound mutations.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9271433/ )

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Yes, my doctor has prescribed Tagrisso following 4 chemo treatments 3 weeks apart. This is as a precaution as pathology report showed cancer cells touching the inner pleural membrane.
Thank you.

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Hi Merry. How are you these days?
I looked for a specific Multifocal lung cancer group here but can't find it? I have "action". It illustrates the "whack-a-mole" of multifocal.
Went for CT scan last week and one nodule is enlarging and concerning. It is in same right lobe as the one removed with VAT surgery. Tumor Board recommends Radiation as not amenable to surgery. Have PET scan and Radiation Oncology consult set up.
However, I still have the nodule in the left lung identified at the original diagnosis. It hasn't changed much but the original PET CT scan lite up both lungs. The right one was more concerning at the time and was removed with my VAT surgery.
So new PET scan will be interesting to see if left one is still lighting up. They may do biopsy and surgery is possible for that one. So, I am curious to see the game plan. If they cut it out, it can be analyzed. Never know if it is independent or metastasis.
HEY, I finally got to Italy - on the fifth try. I spent 4 weeks in March there. And I did not catch Covid per PCR test! I did get a sore throat in last two days and had extreme jet lag returning - maybe it was the snow we got on April 1st

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@lijda

I'm sorry about the news you're receiving. In an earlier post, you mentioned that your tumor tested positive for the EGFR mutation. You could (should) ask your oncologist if Tagrisso (Osimertinib) might not be an alternative to chemotherapy. Tagrisso is now recommended as adjuvant treatment, to prevent recurrence for patients with EGFR exon 19 deletions or exon 21 L858R after successful surgical removal of the tumor. (There are other flavors of EGFR mutations, perhaps yours isn’t an exon 19 deletion or exon 21 L858R, although these are the most common.) Adjuvant treatment is additional cancer treatment given after the primary treatment (such as surgery) to lower the risk that the cancer will come back.

Your oncologist might prefer to use chemotherapy as a first-line adjuvant therapy but the clinical trial for Tagrisso as adjuvant treatment was not limited to that; it was testing the use of Tagrisso in early-stage EGFR-positive lung cancer “following complete tumour resection with or without adjuvant chemotherapy.” It would certainly be interesting to learn if your oncologist plans to recommend Tagrisso after first-line chemotherapy adjuvant therapy.

Tagrisso also reduces the risk of the spread of the cancer to the brain or spinal cord.

Here is a link to the FDA approval for Tagrisso as adjuvant treatment:
https://www.fda.gov/drugs/resources-information-approved-drugs/fda-approves-osimertinib-adjuvant-therapy-non-small-cell-lung-cancer-egfr-mutations
And here is a link from AstraZeneca (the maker of Tagrisso) about the results of a clinical trial using Tagrisso as adjuvant treatment.
https://www.astrazeneca.com/media-centre/press-releases/2022/tagrisso-demonstrated-5-year-median-disease-free-survival-in-the-adjuvant-treatment-of-patients-with-egfr-mutated-lung-cancer.html
Although exon 19 deletion or exon 21 L858R are the common EGFR mutations, another study showed that “Osimertinib demonstrates activity in patients with uncommon EGFR-mutations, and especially for G719X-compound mutations.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9271433/ )

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Yes, Tagrisso for 3 years after chemo. Thanks. I’m hopeful.

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@vic83

Hi Merry. How are you these days?
I looked for a specific Multifocal lung cancer group here but can't find it? I have "action". It illustrates the "whack-a-mole" of multifocal.
Went for CT scan last week and one nodule is enlarging and concerning. It is in same right lobe as the one removed with VAT surgery. Tumor Board recommends Radiation as not amenable to surgery. Have PET scan and Radiation Oncology consult set up.
However, I still have the nodule in the left lung identified at the original diagnosis. It hasn't changed much but the original PET CT scan lite up both lungs. The right one was more concerning at the time and was removed with my VAT surgery.
So new PET scan will be interesting to see if left one is still lighting up. They may do biopsy and surgery is possible for that one. So, I am curious to see the game plan. If they cut it out, it can be analyzed. Never know if it is independent or metastasis.
HEY, I finally got to Italy - on the fifth try. I spent 4 weeks in March there. And I did not catch Covid per PCR test! I did get a sore throat in last two days and had extreme jet lag returning - maybe it was the snow we got on April 1st

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Hi @vic83, good to hear from you again. Merry (@merpreb), has taken some time away from Connect to care for a family member. We all miss her expertise and kind words.
There is not a specific group for multifocal lung cancer. Sorry to hear that you are dealing with this again. You are right, this is what some of us face, but it never gets easy. I’m stage IV, with continued scans, and expected recurrence at some point. It sounds like you are in good hands, and have your next steps in place.
Congrats on finally getting to Italy, that sounds like a fabulous trip! That’s exciting! I hope your sore throat resolves with little issue.
When is your next PET, and radiation oncology appointment?

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@lls8000

Hi @vic83, good to hear from you again. Merry (@merpreb), has taken some time away from Connect to care for a family member. We all miss her expertise and kind words.
There is not a specific group for multifocal lung cancer. Sorry to hear that you are dealing with this again. You are right, this is what some of us face, but it never gets easy. I’m stage IV, with continued scans, and expected recurrence at some point. It sounds like you are in good hands, and have your next steps in place.
Congrats on finally getting to Italy, that sounds like a fabulous trip! That’s exciting! I hope your sore throat resolves with little issue.
When is your next PET, and radiation oncology appointment?

Jump to this post

Hi Lisa, thanks for your reply. Yes, we shall miss Merry and her expertise. Her experience was very helpful for me to understand the animal I was dealing with.
My PET scan is in 9 days followed by Radiation Oncology consult two days later. I have not had radiation before and am wondering about how many/how often the sittings will be.
Having Multifocal means having multiple nodules at different levels of development. To follow, I track all my nodules reported in my CT scans in a spreadsheet. It is a challenge because each Radiologist has his/her own style of summarizing.
What are you stage IV with?

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@vic83

Hi Lisa, thanks for your reply. Yes, we shall miss Merry and her expertise. Her experience was very helpful for me to understand the animal I was dealing with.
My PET scan is in 9 days followed by Radiation Oncology consult two days later. I have not had radiation before and am wondering about how many/how often the sittings will be.
Having Multifocal means having multiple nodules at different levels of development. To follow, I track all my nodules reported in my CT scans in a spreadsheet. It is a challenge because each Radiologist has his/her own style of summarizing.
What are you stage IV with?

Jump to this post

Hi @vic83, It can’t be easy to keep track of the nodules when there are so many. A spreadsheet is a great idea! The radiologists do all have their own style of reporting. I’ve noticed that some radiologists will mention conditions completely unrelated to the cancer and then no one will ever mention it again. Funny. I have a spreadsheet to track my timeline. I’ve heard that can be helpful if/when I may need a second opinion. I have ALK positive lung cancer, treated with a targeted therapy (high tech pills). They are doing their job for now, eventually the cancer mutates around the meds, and it will come back. So I have scans every 3-4 months.
Hoping that the radiation oncologist answers your questions, everyones treatment plan is different.

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@lls8000

Hi @vic83, It can’t be easy to keep track of the nodules when there are so many. A spreadsheet is a great idea! The radiologists do all have their own style of reporting. I’ve noticed that some radiologists will mention conditions completely unrelated to the cancer and then no one will ever mention it again. Funny. I have a spreadsheet to track my timeline. I’ve heard that can be helpful if/when I may need a second opinion. I have ALK positive lung cancer, treated with a targeted therapy (high tech pills). They are doing their job for now, eventually the cancer mutates around the meds, and it will come back. So I have scans every 3-4 months.
Hoping that the radiation oncologist answers your questions, everyones treatment plan is different.

Jump to this post

Yes, I also have noted that CT reports sometimes mention unrelated conditions. That could be of value in discovering other issues to treat.

My work required a lot of analysis, so it is second nature to me to seek to analyze data. I am curious to know how doctors track evolving cases when the CT scan reports seem to lack standardization in reporting. I would think that lungs would be divided into specific segments, and CT scan report would report on each segment.
I follow closely all my reports from several different institutions. Technology has provided a great gift to medicine, but there is work to be done in creating processes to input data and analyze clinical profiles so that the medical intelligence created by such technical capacities can be easily utilized by healthcare providers. Doctors have limited time, and complex cases require an investment of time for a new provider. Medical intelligence needs to be well organized to highlight key points. I can't imagine what they did before technology!

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@vic83

Yes, I also have noted that CT reports sometimes mention unrelated conditions. That could be of value in discovering other issues to treat.

My work required a lot of analysis, so it is second nature to me to seek to analyze data. I am curious to know how doctors track evolving cases when the CT scan reports seem to lack standardization in reporting. I would think that lungs would be divided into specific segments, and CT scan report would report on each segment.
I follow closely all my reports from several different institutions. Technology has provided a great gift to medicine, but there is work to be done in creating processes to input data and analyze clinical profiles so that the medical intelligence created by such technical capacities can be easily utilized by healthcare providers. Doctors have limited time, and complex cases require an investment of time for a new provider. Medical intelligence needs to be well organized to highlight key points. I can't imagine what they did before technology!

Jump to this post

You are right - pretty much everything in medicine has been defined in detail. The lungs have indeed been divided into pieces - 5 lobes(2 left, 3 right) and further divided into segments(8 left, 10 right) and then you can describe sub parts of these with the common terms for front, back, top, bottom, etc.
How well the reports use these definitions depends on the individual pulmonary radiologist. Strict standardization in reporting can have its own issues too.

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