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.

@nonobaddog

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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Well, the lungs are composed of five lobes. However, the ability to analyze data requires strict segmentation. And analyzing CT scan results would require a specific level of rules. For modelling purposes one would want to compare against other similar profiles.

One hears about "big data" today. Big data is a term that refers to large, diverse, and complex sets of information that are created and collected at high speeds from various sources. Big data can be structured, semi structured, or unstructured, and it challenges traditional database management tools. Big data can be analyzed for insights that improve decisions and enable advanced analytics applications such as machine learning and predictive modeling.
This is a new and evolving concept that has different meanings and implications for different fields and purposes.

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@vic83

Well, the lungs are composed of five lobes. However, the ability to analyze data requires strict segmentation. And analyzing CT scan results would require a specific level of rules. For modelling purposes one would want to compare against other similar profiles.

One hears about "big data" today. Big data is a term that refers to large, diverse, and complex sets of information that are created and collected at high speeds from various sources. Big data can be structured, semi structured, or unstructured, and it challenges traditional database management tools. Big data can be analyzed for insights that improve decisions and enable advanced analytics applications such as machine learning and predictive modeling.
This is a new and evolving concept that has different meanings and implications for different fields and purposes.

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Yes, "big data" is a hot buzzword and the IT industry definitely loves buzzwords. I have dealt with analysis and data structure my whole career. I am retired now but I started out in medical research at Mayo Clinic. I enjoyed the analysis part and switched to IT in the middle of my 35 years at Mayo. Liked application development with a focus on relational database design. The funny thing is my last 4 or 5 years I was working exclusively with radiation oncology and then I became a customer. ☺

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@nonobaddog

Yes, "big data" is a hot buzzword and the IT industry definitely loves buzzwords. I have dealt with analysis and data structure my whole career. I am retired now but I started out in medical research at Mayo Clinic. I enjoyed the analysis part and switched to IT in the middle of my 35 years at Mayo. Liked application development with a focus on relational database design. The funny thing is my last 4 or 5 years I was working exclusively with radiation oncology and then I became a customer. ☺

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I am also retired now and was a market research professional in high tech. I had been working abroad and came back right when desktop PCs were starting to show up on everyone's desk. I took a DOS class...I never want to be a programmer... but learned how a relational database works. I saw the potential with that technology. Convincing others of the value took a little patience. Now it is a given. Last year I discovered a glitch in my local providers tracking of covid data and got them to correct it.
The trick is to know where you want to go with the technology.

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@nonobaddog

Yes, "big data" is a hot buzzword and the IT industry definitely loves buzzwords. I have dealt with analysis and data structure my whole career. I am retired now but I started out in medical research at Mayo Clinic. I enjoyed the analysis part and switched to IT in the middle of my 35 years at Mayo. Liked application development with a focus on relational database design. The funny thing is my last 4 or 5 years I was working exclusively with radiation oncology and then I became a customer. ☺

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And allow me to take advantage of you for my own curiosity. I hear about EPIC that Mayo uses and other medical institutions use. I have been told that a doctor in one institution can then see your records in another institution that uses EPIC. But I also read that it is a lot of work for a doctor to be able to pull up your records in another institution. So how well is that really working?
MyChart will compare my reports done in the same clinic. But if I pull in reports from another clinic, it can't compare them. For example, I pulled in blood work reports from another clinic. But when I want to look at a table of values from both Mayo and the other clinics over a period of time, it won't do that.

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@vic83

And allow me to take advantage of you for my own curiosity. I hear about EPIC that Mayo uses and other medical institutions use. I have been told that a doctor in one institution can then see your records in another institution that uses EPIC. But I also read that it is a lot of work for a doctor to be able to pull up your records in another institution. So how well is that really working?
MyChart will compare my reports done in the same clinic. But if I pull in reports from another clinic, it can't compare them. For example, I pulled in blood work reports from another clinic. But when I want to look at a table of values from both Mayo and the other clinics over a period of time, it won't do that.

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I would like to help but I don't really know that. I get all of my healthcare done at Mayo so I never have records from another institution involved. Also I retired 13 years ago which was before Mayo started using Epic.
On retirement I went from having full access to everything I needed across many departments and locations to having no access to anything - not even my own data. The patient portal is a big improvement compared to just a few years ago.

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@nonobaddog

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.

Jump to this post

@vic83 and @nonobaddog, I completely agree. My analytical side would love for all the reports to be easily compared, and somewhat standardized. I believe you'll generally see more standardization in breast imaging than in most other areas, partly due to regulatory requirements. The CT Chest, Abdomen, Pelvis reports cover a lot of the human body, and our complicated (IE. cancer filled) bodies aren't standard and don't always fit into the medical standard box either. I'm usually surprised to see some note about a condition that I don't think I have (diverticulitis was on the last set of scans, surprise!), I generally wait for the next scan to see if the radiologist notes the same findings. It's like scan roulette...what will they come up with next. After years of dealing with this I can shake it off, but I know it can be concerning for others.

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@lls8000

@vic83 and @nonobaddog, I completely agree. My analytical side would love for all the reports to be easily compared, and somewhat standardized. I believe you'll generally see more standardization in breast imaging than in most other areas, partly due to regulatory requirements. The CT Chest, Abdomen, Pelvis reports cover a lot of the human body, and our complicated (IE. cancer filled) bodies aren't standard and don't always fit into the medical standard box either. I'm usually surprised to see some note about a condition that I don't think I have (diverticulitis was on the last set of scans, surprise!), I generally wait for the next scan to see if the radiologist notes the same findings. It's like scan roulette...what will they come up with next. After years of dealing with this I can shake it off, but I know it can be concerning for others.

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By standardized I don't mean boiler plate. If the objective is to track change over time, then there must be agreement and rules on how to measure, track and report identified lesions and abnormalities. I am curious to know just how radiologists are approaching this.
Certainly, CT scans have different objectives and do focus on different parts of the body, but that is resolved with well-designed specific radiology practices.
I googled and came across some discussion on this.

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Hi Merry, was relieved to see your post. I had a RUL lobectomy in Mar 2023 and recovered well. But was told post surgery, there were 3 nodules in the lobe remived and I have 3 other nodules in the left lung they are monitoring. I haven't met any one else that has multifocal diagnosis. It scared me as dr said chance of reoccurrence is higher. Thank you for sharing your strength! Best wishes on your treatment.

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@balevine

Hi Merry, was relieved to see your post. I had a RUL lobectomy in Mar 2023 and recovered well. But was told post surgery, there were 3 nodules in the lobe remived and I have 3 other nodules in the left lung they are monitoring. I haven't met any one else that has multifocal diagnosis. It scared me as dr said chance of reoccurrence is higher. Thank you for sharing your strength! Best wishes on your treatment.

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@balevine- Good morning. I'm sorry you have felt alone in this type of lung cancer. So did I. I thought that I was the only one! How pompous of me, eh? There are quite a few of us but we are not confined right now to just the group called, Multi-focal. We are scattered all over this site. "Things are a changin!

Please take a look at this
https://connect.mayoclinic.org/discussion/multifocal-adenocarcinoma-of-the-lung-continual-recurrences/
Merry

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@balevine

Hi Merry, was relieved to see your post. I had a RUL lobectomy in Mar 2023 and recovered well. But was told post surgery, there were 3 nodules in the lobe remived and I have 3 other nodules in the left lung they are monitoring. I haven't met any one else that has multifocal diagnosis. It scared me as dr said chance of reoccurrence is higher. Thank you for sharing your strength! Best wishes on your treatment.

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Hi Balevine. You are not alone. I have had two VAT surgeries in the last 20 months and am now looking at radiation on several others.

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