← Return to Had lobectomy in 2020 still having radiating severe nerve pain.

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They removed my RUL and RML at the same time in 2000. They did the regular thoracotomy in those days. My scar runs from my right back shoulder blade, down around my side and ends under my right breast. It's a big scar maybe 15 inches long and it still hurts especially when a new storm rolls in. I've learned to tune out most of the the nerve pain. My tumor was 10-12cm so they had to take both lobes. Right after that surgery I had 7 weeks of daily radiation with chemo every friday. Even though the tumor was gone, I did the concurrent chemo/radiation follow up to try to make sure the cancer didn't come back.

My next tumor was on the LL in 2021. Biopsy showed it to be the same kind of lung cancer at in 2000.
Radiation treatment has really improved. I was so happy I could just do two one hour sessions of the SBRT radiation treatment instead of going in every day for 7 weeks like in 2000. That tumor slowly resolved and appears to be gone. Just scar tissue remains.

Now the newest spot is a problem. They could needle biopsy it but there is a risk of lung collapse. Hopefully it will stay 1 cm and won't grow anymore. If it does start growing, we will probably do a biopsy and thermo or radioablation....or more SBRT radiation. There is a limit how much radiation the chest can take in a life time though.

Oh I know -too much info. I remember what it was like though. I was so afraid when first diagnosed. In those days there were very few support systems for LC survivors. I remember wanted to talk to someone who was a long term survivors but I couldn't find any. Now with online groups there are many longterm LC survivors. Sending prayers to you tonight for good outcomes for you mef. < 3

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Replies to "They removed my RUL and RML at the same time in 2000. They did the regular..."

Wow you’ve certainly been through a lot. I used to be a runner & felt like something was wrong with my lungs like an infection. I had 3 pop up side by side . They wanted to wait & see but I didn’t. My dad had died of lung Cancer. I insisted on a biopsy. I had a lung collapse so they wanted to wait. I said no I want a biopsy. Sure enough Adenocarcinoma. Surgeon said because there were 3 side by side he wanted to remove entire URL
I agreed. That was 03/2020 since then 2 popped up on right lobes but now 5 popped up on my left lobes. I feel history is repeated itself. If they grow I’m going to insist on a biopsy. Doctor prescribed Gabapentine for the nerve pain & it does help however if I stand too long it comes on fiercely so I get on a heating pad & that helps a lot. I did not require chemo or radiation with first surgery because we (actually I) caught it early.
For those out there reading this I want you to know that if something feels off get it checked out. Insist ona biopsy if large enough. Speak up & be your own health advocate. It’s that important!