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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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Incision where chest tube is inserted is bleeding - seeping really - seems that incision was not completely closed. Hospital staff not in agreement how to handle. Add stitches or just waych and wait. Scary.
Home and drugs are helping with the pain. Chest tube coming out was quite easy. Thanks again for everyone’s support. This all happened so fast. Your information and good wishes really helped. Doc expects lymph nodes he took to be negative. If so I’m done! Scans every 6 months. Can highly recommend Dr David Odell and the Northwestern team at Lurie.
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3 ReactionsI’m going to check out your blog today, but I’m so thankful to see this. You won’t find these stories on Google or anything really. I was diagnosed last week at the age of 42. I should know my staging next week. I am certainly hoping to have a similar story as yours, and I will fight as hard as I can to make sure of that. I am so happy for you and your family, and I can’t wait to read the blog.
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2 ReactionsMy outcome continues to be positive. Early detection - Stage 1b - helps. Today I learned that all lymph nodes were clear! Great news. I also learned that my cancer is related to dna and a gene mutation. Not sure what this means yet. Before this finding, no treatment was recommended. Just scans every 6 months. Anyone have experience with EGFR and early stage Non Small Cell cancer?
Congrats on the good news! That's exciting.
I'm glad they found the EGFR gene mutation. Knowing what's driving the cancer can be so important in today's world of high-tech treatments. I'll be interested to see what your treatment plan looks like being at an early stage.
I have a different mutation, ALK, and mine was found late stage. I'm so glad that we're seeing more cases where it's found early! Great news!
Lisa
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2 ReactionsThanks, Lisa. Yes, I’m eager to hear the recommendation. I don’t know if the dna link makes it more likely to recur.
Had some bad news today. Even though cancer was 1b and the node was surgically removed, the margins are very close to the pleura - covering of the lung - which is not operable. Doctors don’t know if cancer cells are in the pleura, but they recommend chemo as a way to get rid of any cancer cells that may be there. The rub is that there is a very low success rate in this case soI’m struggling with the decision to put myself through 4 chemo sessions over 12 weeks with carboplatin and pemetrexed. Has anyone had this?
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1 ReactionSorry to hear that the surgery doesn't appear to be an option for you. Diagnosis and treatment can be a bit like a roller coaster ride, and often frustrating. You never really know what cells have escaped the primary tumor, if any, especially at your early stage. It's important to find a treatment that matches your comfort level and can give you some confidence that you will be ok in the long term.
Have the doctors provided alternatives to the chemo treatments? Take care, Lisa
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1 ReactionThe irony is that everyone believed the surgery would get it all. I’m recovering nicely from my segmentectomy. No other treatment options were offered. I have another appointment with the oncologist to discuss further. Thanks so much.
I'm glad that you are feeling ok. It has to be hard to think you have one plan, only to find out more is needed. I don't have direct experience with carboplatin and pemetrexed, but I have heard of this combo being used for other gene-based lung cancers. Hopefully the oncologist can provide more info on what to expect.
Lisa
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