1. < Lung Cancer

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.

You will automatically get a notice of a new post if you sign up.
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.

lijda | @lijda | Feb 16, 2023
In reply to @colleenyoung "Hi @frouke @nonobaddog and @lijda. 25 years is amazing. I'm writing this message on behalf of..." + (show)
@colleenyoung

Hi @frouke @nonobaddog and @lijda. 25 years is amazing. I'm writing this message on behalf of @merpreb. When we don't hear from a member, it is easy to think the worst. I'm glad to tell you that Merry continues to add years to her 25 year lung cancer survivorship and is going strong.

For the moment, she has had to step back from the Lung Cancer support group as she has turned her energies to being the main caregiver to a family member.

I look forward to your continuing in Merry's footsteps and providing support for one another and building the community we have on this forum.

I'd love to get an update from each of you. How are you? What treatments or challenges are you facing or questions do you have?

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Hi, Colleen, First of all, I am pleased to hear that news of Merry isn't the worst although caregiving, for both the carer and the cared, isn't, of course, the best.

Second, here is an update, as requested. I am doing fine! I am very comfortable with my decision not to start targeted treatment (Tagrisso for EGFR mutation) until I become symptomatic or something of concern shows on the 3-month scans. The January CAP (chest/abdomen/pelvis) scan showed the usual slow growth of some lung nodules (out of the 20 to 30 lung nodules I have); the brain MRI was fine.

My key questions for others with multifocal lung cancer are:

(1) do you have any metastases beyond the lungs? (I really don't like lumping bilateral lung lesions with metastases to other locations such as lymph nodes or brain or bone etc etc. By definition, bilateral lung lesions are considered metastatic and, therefore, stage 4, but I just don't think bilateral lung lesions are in the same league.)

(2) Based on molecular testing, are you doing targeted therapy to treat the specific malignancy identified by the molecular testing?

I am eagerly awating results, due in October, of the Mayo Clinic clinical study of multifocal lung cancer; and I thank this forum for bringing it to my attention.

REPLY
2 replies
lijda | @lijda | Feb 16, 2023
In reply to @merpreb "Thank you Colleen @frouke @nonobaddog and @lijda. - Good morning and thank you for reaching out..." + (show)
@merpreb

Thank you Colleen

@frouke @nonobaddog and @lijda. - Good morning and thank you for reaching out to me earlier. Due to my home situation, as COlleen has said I have had to step back from full-time Mentoring for right now and take care of my husband. Up until this year, he has seen me through all 25+ years of my lung cancer journey and now I owe him the same.

I won't be able to respond to each case here but the main thing that I want to say is that having a positive attitude didn't come easy or in short order. Some of it is intrinsic I think. I was one of a pair of twins and we fought over everything. I had to win and it seems in everything I do now it is true. Another thing is that there are many depressing factors about having cancer of any kind including the country's health care system. So those have to be overcome.

Having good doctors who are encouraging and a support system behind you is extremely important. I find that the main thing is persevering, plodding on day after day, and feeling crummy or discouraged. I don't think that anyone can feel positive or upbeat 100% of the time. Right now I am sitting on my bed feeling terrible from having to take prednisone because I have pneumonitis as a result of SBRT from last October. I had 2 lesions zapped from my right middle lung that was very close to my heart. It was my 3rd SBRT. I have not had any other targeted treatments. A long time ago I did have chemo and my first two cancers resulted in total lobe removals.

I do hope that you will continue to support each other as you have. I will pop in from time to time and I miss everyone. I spent a lot of time googling for answers but interactions with real people can't be replaced. I think of you all.
Merry

Jump to this post

Thank you again (and always) for your support in this forum. I was a caregiver for my husband for ten years so I appreciate the toll (as well as the rewards and all the emotions in between) of caregiving. I remember that, when things seemed overwhelming, sometimes my husband and I would just stand and hold each other. May you both find comfort even in the stress.

REPLY
1 reply
Merry, Alumni Mentor | @merpreb | Feb 17, 2023
In reply to @lijda "Thank you again (and always) for your support in this forum. I was a caregiver for..." + (show)
@lijda

Thank you again (and always) for your support in this forum. I was a caregiver for my husband for ten years so I appreciate the toll (as well as the rewards and all the emotions in between) of caregiving. I remember that, when things seemed overwhelming, sometimes my husband and I would just stand and hold each other. May you both find comfort even in the stress.

Jump to this post

Lijda- I understand about the rewards. Isn't it incredible that another person can trust you so openly to allow them to make life decisions on your behalf? WOW

REPLY
vic83 | @vic83 | Feb 17, 2023
In reply to @lijda "Hi, Colleen, First of all, I am pleased to hear that news of Merry isn't the..." + (show)
@lijda

Hi, Colleen, First of all, I am pleased to hear that news of Merry isn't the worst although caregiving, for both the carer and the cared, isn't, of course, the best.

Second, here is an update, as requested. I am doing fine! I am very comfortable with my decision not to start targeted treatment (Tagrisso for EGFR mutation) until I become symptomatic or something of concern shows on the 3-month scans. The January CAP (chest/abdomen/pelvis) scan showed the usual slow growth of some lung nodules (out of the 20 to 30 lung nodules I have); the brain MRI was fine.

My key questions for others with multifocal lung cancer are:

(1) do you have any metastases beyond the lungs? (I really don't like lumping bilateral lung lesions with metastases to other locations such as lymph nodes or brain or bone etc etc. By definition, bilateral lung lesions are considered metastatic and, therefore, stage 4, but I just don't think bilateral lung lesions are in the same league.)

(2) Based on molecular testing, are you doing targeted therapy to treat the specific malignancy identified by the molecular testing?

I am eagerly awating results, due in October, of the Mayo Clinic clinical study of multifocal lung cancer; and I thank this forum for bringing it to my attention.

Jump to this post

Hi Lijda, to respond somewhat:
1) I have nothing beyond the lungs ( based on PET scan end Nov 2021) but I do have things in both lungs and both lungs active on PET scan. While I had a 3.1cm stage 1b mass removed from right lung (end Dec 2021), and right lung has the majority of other nodules, the second largest "thing" was in my left lung. They did not want to do anything before 6 months and then I had cardiac stent so it has been on hold. But left lung thing has been stable so far. I go to Mayo in April for next scan and there has been some activity with certain nodules. I would agree with your comment on bilateral lung nodules. I found a YouTube video, Dr Blackmon, Mayo about multifocal spread to brain.
2) I did the molecular testing but was not offered any treatment. I did not have to do anything after surgery, and only radiation or surgery has been topic of potential treatments in future.
I will be very tempted to beg for a sneak preview of the Mayo Multifocal study when I go in April. On Feb 11, 2022, Mayo added "Multifocal Lung Cancer Specialty Group to their Web page.

REPLY
Merry, Alumni Mentor | @merpreb | Feb 17, 2023
In reply to @lijda "Hi, Colleen, First of all, I am pleased to hear that news of Merry isn't the..." + (show)
@lijda

Hi, Colleen, First of all, I am pleased to hear that news of Merry isn't the worst although caregiving, for both the carer and the cared, isn't, of course, the best.

Second, here is an update, as requested. I am doing fine! I am very comfortable with my decision not to start targeted treatment (Tagrisso for EGFR mutation) until I become symptomatic or something of concern shows on the 3-month scans. The January CAP (chest/abdomen/pelvis) scan showed the usual slow growth of some lung nodules (out of the 20 to 30 lung nodules I have); the brain MRI was fine.

My key questions for others with multifocal lung cancer are:

(1) do you have any metastases beyond the lungs? (I really don't like lumping bilateral lung lesions with metastases to other locations such as lymph nodes or brain or bone etc etc. By definition, bilateral lung lesions are considered metastatic and, therefore, stage 4, but I just don't think bilateral lung lesions are in the same league.)

(2) Based on molecular testing, are you doing targeted therapy to treat the specific malignancy identified by the molecular testing?

I am eagerly awating results, due in October, of the Mayo Clinic clinical study of multifocal lung cancer; and I thank this forum for bringing it to my attention.

Jump to this post

@lijda- What, great questions. I have had swollen lymph nodes for 25 years. I've also had more than one lesion at a time in both lungs. Maybe the following will help?
https://www.sciencedirect.com/science/article/pii/S1525157817303276
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2219804/#:~:text=The%20differential%20diagnoses%20of%20bilateral,term%20smoker%20is%20lung%20cancer.

REPLY
franciekid | @franciekid | Feb 25, 2023

Thank you for this hopeful message. I was in the ER for a presumed TIA and the CT scan showed a 13 mm spiculated nodule on my lung that my doctor is pretty sure is lung cancer. I haven’t smoked for over 50 years - I’m 78 - and was totally shocked. I’m dreading treatment and am viewing this as a death sentence. Any thoughts?

REPLY
3 replies
vic83 | @vic83 | Feb 25, 2023
In reply to @franciekid "Thank you for this hopeful message. I was in the ER for a presumed TIA and..." + (show)
@franciekid

Thank you for this hopeful message. I was in the ER for a presumed TIA and the CT scan showed a 13 mm spiculated nodule on my lung that my doctor is pretty sure is lung cancer. I haven’t smoked for over 50 years - I’m 78 - and was totally shocked. I’m dreading treatment and am viewing this as a death sentence. Any thoughts?

Jump to this post

Yes, it is a shock to find out one may have lung cancer. But lung cancer can be treated. Read the stories here. In Dec 2021 I had a 3.1 cm somewhat spiculated cancerous nodule removed. I am doing fine 14 months later. They did video assisted thoracic surgery and I was home in two days and driving my car in a week. What is important is to find out what treatment options (surgery, radiation, etc.) exist for your particular situation. And then to go to the institution that can provide the treatment you believe is best for you. Not all doctors/institutions offer the same treatment options.

REPLY
1 reply
franciekid | @franciekid | Feb 26, 2023
In reply to @vic83 "Yes, it is a shock to find out one may have lung cancer. But lung cancer..." + (show)
@vic83

Yes, it is a shock to find out one may have lung cancer. But lung cancer can be treated. Read the stories here. In Dec 2021 I had a 3.1 cm somewhat spiculated cancerous nodule removed. I am doing fine 14 months later. They did video assisted thoracic surgery and I was home in two days and driving my car in a week. What is important is to find out what treatment options (surgery, radiation, etc.) exist for your particular situation. And then to go to the institution that can provide the treatment you believe is best for you. Not all doctors/institutions offer the same treatment options.

Jump to this post

Thank you so much. How much time between your diagnosis and your surgery?

REPLY
vic83 | @vic83 | Feb 26, 2023

1) I went to Mayo Clinic and they did robotically navigated biopsies and VAT surgery to remove the mass all in one combined procedure. Very convenient to get it all over with and not wait between some biopsy and surgery.
2) Total time from abnormal x-ray to surgery was 7 weeks with Thanksgiving and Christmas in-between.
3) My point is that one should read the reports that are posted, check out the background of the doctors involved for their level of expertise and take action. Urgent care did the x-ray and I immediately self-referred to a local Pulmonologist and did not go to my Primary Care doctor - I have original Medicare and can self-refer -why waste time? I had to first see a local Pulmonologist who ordered the necessary CT and PET scans. Reports talked potential cancer, so I had scans sent to Mayo and Mayo gave me immediate appointment.
I confess I am not one to wait around ....

REPLY
Merry, Alumni Mentor | @merpreb | Feb 26, 2023
In reply to @franciekid "Thank you for this hopeful message. I was in the ER for a presumed TIA and..." + (show)
@franciekid

Thank you for this hopeful message. I was in the ER for a presumed TIA and the CT scan showed a 13 mm spiculated nodule on my lung that my doctor is pretty sure is lung cancer. I haven’t smoked for over 50 years - I’m 78 - and was totally shocked. I’m dreading treatment and am viewing this as a death sentence. Any thoughts?

Jump to this post

Aww, please don't think this way. There have been many many long-term survivors of lung cancer. Yes, people die from cancer but there has been a lot, and I mean a lot of breakthroughs with treatments for it. Many people are living with managed lung cancer as if it were a chronic condition. That's how I'm managing it.

I'm 76 and even if we are of enviable maturity we also have the advantage of living in this time and age where lung cancer research and discoveries have never been so fruitful.

I quit smoking a long time ago too. And I was a very heavy smoker.

I'm here to help you with your journey. For now, what is your next step?

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