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.

Lisa, Volunteer Mentor | @lls8000 | Aug 20, 2023

In reply to @soupycampbell "I have since talked to my family Dr and I had pretty much decided not to..." + (show)

Good morning Joan (@soupycampbell), that sudden pain had to have been scary. I’m glad it subsided on its own. Before my tumors were under control, the only one that I ever felt was in the liver, that would give me a sharp pain that would pass fairly quickly. I’m not sure if the tumors are causing your pain, and if you have any increased shortness of breath, don’t be afraid to call for help. There is a lot that could be causing this.
Your pup is lucky to have you! She sounds so attached to you, but I’m glad your granddaughter will take good care of her if/when the time comes. I’m sure your family will honor your decision to have her with you, how sweet.
Do you know when the radiation will start? Have you had any additional pain episodes?

Merry, Alumni Mentor | @merpreb | Aug 21, 2023

In reply to @soupycampbell "Thank you. You will probably see another reply I answered this morning so won’t repeat. Message..." + (show)

@ soupy - I bet that scared you you no-end. How long did it last? What were you doing when that happened?

Merry, Alumni Mentor | @merpreb | Aug 21, 2023

In reply to @merpreb "@ soupy - I bet that scared you you no-end. How long did it last? What..." + (show)

Joan- Here is a link that helps you figure out how to travel through Connect. It's a bible to help you if you forget where to go or where you are! 🙂

Merry

vic83 | @vic83 | Aug 22, 2023

In reply to @merpreb "My lungs are sensitive, so I had a lot of irritation and needed to be on..." + (show)

Hi Merry. Just saw your comment about radiation and irritation. Last week I did 3 sessions of SBRT (photon) for a nodule (and a little one right next to it which was just asking for it). They originally said 5 sessions but could up dose and did in three. I have had no skin irritation and would not know I had radiation. You mention back being sunburned. Did they turn you over and do from back?
I have read that SBRT is from 3 to 8 sessions depending on relevant factors. Mayo told me that they used to separate sessions one day on and one day off but found there was no benefit, so they do every day without skipping a day.
My rib cage/lungs are still sore from surgery on other lung 3 months ago, so I am not sure of the impact of radiation on the other lung. I had SOB before and still have so can't tell the difference. How do you know if you have pneumonitis?

Merry, Alumni Mentor | @merpreb | Aug 23, 2023

In reply to @vic83 "Hi Merry. Just saw your comment about radiation and irritation. Last week I did 3 sessions..." + (show)

Hey, Vic. Nice to hear from you. My symptoms told the doctor that I had pneumonitis through my symptoms and CT scan. It wasn't terrific.

The machine used for the one before this one had an arm that went under the table to zap the tumor on all sides, is my guess.

Are you getting out yet and walking? I was sore for a while, too.

I'm glad that you reached out!

Merry

Merry, Alumni Mentor | @merpreb | Aug 23, 2023

In reply to @soupycampbell "I have since talked to my family Dr and I had pretty much decided not to..." + (show)

Soupy- You will have to check with the hospital and your doctor for answers to your great questions about your dog and doctor-assisted death.

I'm glad that you have talked with your doctor and family to make a joint decision. I feel better with that one too.

Have you yet seen or talked to your doctor about your chest pain?

Are you still planning on your trips?

Merry

vic83 | @vic83 | Aug 23, 2023

In reply to @merpreb "Hey, Vic. Nice to hear from you. My symptoms told the doctor that I had pneumonitis..." + (show)

Hi again Merry and thanks for your reply. You can be sure I am walking! But not quite up to same capacity as before surgery. However, just did 30 min on treadmill at a good pace. One has to do minimum 150 minutes a week!
I am only a little sore when I take deep breathe. I have lots of numbness. It sometimes feels like I am wearing something when I am not.
How were your oxygen levels with your various treatments? My oxygen leveI is fine on the sofa in front of the TV (95 and higher), but with exertion it drops. It was noted during my cardio rehab and during my pulmonary function tests. On the treadmill just now, it dropped to 88/87. Reports say it is pulmonary or vascular. And for both surgeries I was sent home with 3 months of night oxygen. Then I go back to normal.
There is some survey they like you to update after procedures about pain etc. It asks me if my health prevents me from during 2 hours of manual labor. I have never had to do two hours of manual labor so how do I answer that?

soupycampbell | @soupycampbell | Aug 25, 2023

In reply to @merpreb "Soupy- You will have to check with the hospital and your doctor for answers to your..." + (show)

Hi Merry…Yes, I talk to my Dr quite often. So I’m doing 5 days of Radiation when I get back on Sept 5. They will do scan first, I assume to mark where they will zap. I opted for the five days of lower dose. I would have sworn that he had said it was five weeks and 10 weeks but obviously and thank God it’s not. I called about MAID filled out the forms and emailed it. They told me once they check my medical records someone will be out to see me. Apparently I would be able to give them up to 2 days notice for them to come and do the deed. Hopefully the radiation will stall it somewhat and it won’t be for awhile. I’ve only had smaller pains but yes it’s from the lung. Thank you for all your input to me. Much appreciated.
Joan

soupycampbell | @soupycampbell | Aug 25, 2023

In reply to @lls8000 "Good morning Joan (@soupycampbell), that sudden pain had to have been scary. I’m glad it subsided..." + (show)

Thank you. You will/should see my reply to Merry. Yes, I can handle that if it’s not too often. Had a slightly one today not too bad at all. Start radiation sometime after September 5 when I get back from San Diego.
Joan