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Celebrating 25 years of lung cancer
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
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No, you are not alone, but it certainly can feel that way.
Five years in, have had surgery and radiation. Scans every 3-4 months. Stable is my favorite word. Think one of the hard things about this type of cancer is explaining it to others. Glad you found us!!
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2 ReactionsYes, explaining it to others is more complicated. People assume that after a surgery with stage 1 cancer one is out of the woods, and it is just about monitoring. But for multifocal it is one down and which one is up to bat next. In 19 months, I have had two surgeries and am expecting to start shortly with radiation for one or more nodules depending on PET scan
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1 ReactionThanks Meka, I noticed in a much older post you were in the Womens Army Corps. I served 1976-1979.
Hello, wow, 74-79 active. Are you on this journey also?? Always great to connect with sister vets, especially WAC's, thank you. I'd be glad to share more if you want.
October 3rd is my birthday, hate having it associated with you suffering. Bless you and your incredible strength. Hope you are completely cured asap.
I’m sure you’ve reacted when I had previous posts awhile back. I had the Desmoplastic Melonoma on my head removed and ok. 2 years coming up this Nov. then this spring I had aPET Scan and they found a tumour on my upper left lung beside the aorta, and one on the lower left lung beside a lymph node. I had opted to get new treatment so that I could have quality of life, as my health was excellent, so in March after the specialist had talk to me and I asked him what I had left he said months to a year and possibly more because I was in good health, so now it is August and I am walking a lot which I love but starting to get tired and breathing worse. They did another scan and the upper one has grown substantially and I have a new one on my back just above the tailbone. The cancer doctor wants to do radiation to help my breathing last longer by doing 10 weeks of stronger radiation. This would be every day. He says that I would have a slight burn on my back, and that the oesophagus would be affected so that it would be painful to swallow water, food, etc. my biggest problem now is to try and find out what kind of reactions others have had with this type of radiation and to be honest I’m not sure that I want to do it. I have opted for quality rate from the beginning and I would rather be pain-free and do what I want to do for a little bit of time that I would have left. I have already filled out my maid form so I can pick my time.
I would be appreciative of any information that could possibly help me one way or the other. Thank you so much.
@soupycampbell
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1 Reaction@soupycampbell- Good morning and yes I do remember your name. And I love the hat and look!
Oh dear, Soupy. You are very brave in a terrible situation. I don't blame you for choosing, perhaps a shorter life but pain free. That would be my pick too.
Radiation therapy is often used to help relieve pain. And there are several types of radiation. I honestly do not know the types of cancer that you have enough to advise you. Your oncologist would be the one. My doctor was a radiologist oncologist and has treated all of my multi-focal adenocarcinoma lesions.
I had SBRT with photon beams. Does this help, at all?
Merry
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1 ReactionI know you have a lot of different treatments in the US. Canada doesn’t seem to have all you do. The tumour is supposed to be Adenocarcinoma. Now about 4.7 cm. He just said I could have 5 weeks of a lower dose but recommended 10 weeks of a higher dose.
Wondering about reactions being as he said or worse or better?? Going crazy here
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1 ReactionMy lungs are sensitive, so I had a lot of irritation and needed to be on a heavy dose of prednisone. I chose to have 5 treatments over 5 days. I did that because I go to Mass General, and it's in Boston. Everything is expensive there, so I wanted to get it done so I could get home to take care of my husband who was showing signs of dementia. I was so tired and short of breath. But it was the only way, given my circumstances, that I could get back to my husband.
The time before this, my back was a bit sunburned, but I didn't even notice it. Fatigue. Did your doctor mention the type of radiation that he wants to use?
But, I do suggest that you hop on a decision as fast as you can so that the beams can start destroying those cancer cells.
One question that I might ask your doctor is the differences in outcomes and side effects between the two. Get the name and research it.
It's confusing, I know, but your craziness will calm down once you make a decision. Also, they can keep an eye on how your tumors are doing to see if they might need to increase the dose or adjust it.
Does this make sense?
Yes and no. That was the only name I got for the bigger one. They did a Broncoscopy and it didn’t tell them much. Also I’ve had a problem with my oesophagus with spasms. I’m still quite torn as I’ve always said quality over pain. Would also be 10 weeks of not being able to do a couple of trips I wanted that are coming up soon. Short ones but meaningful. I have two more docs to pick their brains and will decide before they book my full body scan beginning of Sept.
Thanks for your input. Take care
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