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Living with lung cancer - Introduce yourself & come say hi

Lung Cancer | Last Active: Sep 25 12:58pm | Replies (1044)

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@flusshund

Good Day, everyone. I just found this group. My parents were big fans of the Mayo Clinic. My wife is from Minnesota and her parents have been to the clinic more than once, so I'm a fan, too!

At the young age of 58, I was diagnosed with Stage 2b non-smoker's lung cancer in June 2018. The CT scan showed a 2.7 cm cyst in my upper right lobe. Had surgery to remove the lobe. Pathology showed the cyst was 3.0 cm, hence 2b instead of 2a. It also showed the cancer had spread to the nearest lymph node. It also showed the cyst was closer to the cut line than the CT scan had indicated. When they stained that line, it showed the presence of cancer cells. That bought me 33 radiation treatments. Acting out of an abundance of caution, I also got 4 rounds of chemotherapy.

I did go to the City of Hope for a second opinion. My treatments were already underway by then, but they said they would have recommended everything my doctor had done. I do believe I am lucky that my Oncologist is very good. He's one of these young overachievers who has certifications in Hematology, Oncology and Internal Medicine. RN friends of mine who have worked with him say that he is the smartest doctor they have ever met and, if they or anyone in their family ever needed an Oncologist, they would see him.

Some things went smoothly. Some not so much. The surgery was performed with the latest model Da Vinci robot and was a breeze. I was discharged from the hospital 1.5 days after the surgery. My doctor did have me get a port, which I was very happy to do. (A friend's veins were pretty much destroyed by getting her chemo directly in her arm.) My chemo was concurrent with my radiation, which caused the problem. My Neutrophil count was down to 283 18 days after the first round! We stopped radiation and delayed the 2nd round for a week. Everything came back up. Continued to struggle with very low Neutrophil counts after each round of chemo, but didn't have to delay any more chemo treatments. DID halt radiation for another week which did the trick.

I took all the low Neutrophil precautions, even wearing a mask at work. It was close to Halloween, so I told people I was preparing my costume. Some co-workers knew what it really was. Never got sick. Not even the trace of a fever. After it was all done, my doctor speculated that I might have a rare condition where the Neutrophil cells are actually there, just not mixing around in the blood flow. They're more like the wallflowers at a high school dance that just stick near to the wall and don't move out to the middle of the room.

Tomorrow I have my first 3-month CT/PET scan to verify that I am still cancer free. The only "criticism" I have of my doctor is that I wish he had talked more about this lack of physical stamina that I still experience. I'm still sleeping 8 to 8 1/2 hours a night, which is a good hour to an hour and a half more than what used to be fine for me.

I should mention 2 more things. One, after a friend died of lung cancer 5 years ago, I've been raising money for the American Lung Association every year. I am the team captain of "The Lung and the Breathless", a team of people who climb the 1,400 steps of a local skyscraper to raise money. So it's ironic that I contracted lung cancer! Oh yea, at the time I and my siblings knew of no cancer anywhere in our family history. Since then we've learned that our mother's father died of side effects of colon cancer.

The other irony is how we caught this so early. I am the luckiest person to ever be diagnosed with multiple blood clots in both legs and multiple bilateral pulmonary embolisms. Lucky first because my co-worker and friend died of a pulmonary embolism 8 months before my diagnosis. Lucky second because my Hematologist had just switched to 6-month blood testing when the marker he was watching spiked. That led to the biopsy that revealed lung cancer.

As the Grateful Dead say, "What a long strange trip it's been!" Glad to meet everyone. If you have any questions about my experience, or if I can help you with your experience in any way, just let me know.

P.S. I AM training for this year's stair climb. I'm just starting week 4 in the 9-week program. I don't know if my body will let me finish, but I'm trying! I will be a speaker at this year's event, even if my body isn't up for the climb. I'm hopeful because there is no time limit. As long as I finish the climb the same day that I start, I win!

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Replies to "Good Day, everyone. I just found this group. My parents were big fans of the Mayo..."

@flusshund- Good afternoon and welcome to Mayo Connect. I am a lung cancer volunteer mentor here at Connect. I have had lung cancer on and off for 22 years. I have what is called multifocal adenocarcinoma of the lung. What cell type of cancer do you have? I sympathize with your fatigue. I have had chemo and it's hard to describe to anyone what it feels like. Did your doctor not say anything about your low stamina prior to your lung cancer journey? You are recovering from a lot of chemicals and surgery and radiation. It can take upwards of a year, maybe even a bit more, to feel like yourself again. Rest and sleep when you need it. It sounds as if you have a lot of plans, that's just terrific.
A lot of non-smokers get different types of lung cancers.
Here is my blog, about my lung journey if you care to read it. https://my20yearscancer.com/
How is your breathing? Have you been assigned a pulmonologist?