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Surprise after post op consult..


TJM

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Went to post op meeting today. Got the catheter removed (thank you) and the suture for the drain. Vitals good. Wounds looked fine. Continue walking as much as possible and better training on using the blow in the tube thing. Did take an Xray because I do have a bit of a cough and a rattle...but all in all a great visit.

But....while waiting to get a refill of pain meds (should be the last I will need..pain today best yet) I got a call from the Surgeon. The biopsy report had just come in. The Tumor was not what any of us expected. Instead of a non small cell carcinoid...it was a large cell carcinoid. He put the stage at IIIA. For sure there will be follow up treatments. Starting my research on the ride home but so far not a lot of results coming up for large cell lung tumors.

Definitely not good news. Question is how bad is the news? I'll dive in tonight but if any on the board has heard of this or went thru it would love to hear back. Its rare (less than 2% of lung cancers).

Curious if they would have done the surgery if they knew the actual diagnosis? Regardless....glad the vile thing is out of my chest.

Peace

Tom

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Oh the Google thing.  Yeah, it’s a buster. I wish I had this Forum when I was diagnosed, I would have pitched my computer.  
Since you’re an engineer, Google this: Stephen J Gould’s Essay, The Median Isn’t the Message.  That’s a better place to start. 
 

Since the biopsy came back with something rare, it’s going to be difficult to find readily available public published  data.  There’s so many sub types of NSCLC it’s an apples and oranges comparison.
 

 You might want to consider looking for a doc that has had some front line experience with this sub type before starting treatment.  (I’ve got a rare mutation too, my doctor has a “big” practice- 3 of us in the tri-State area. )

The good news is that Stage IIIa is treated with curative intent.  In some respects it’s a lucky find in that nearly 90% of newly diagnosed surgery isn’t an option.  

Carry on-

Michelle
 

 

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Large Cell is rarer than none small cell.   The treatments including immunotherapy are catching up.  I’m sure you’ll hear from some folks on these boards who have more experience with it.  Some who have had surgery.  Given your perspective and what you’ve gone through so far this is just another bump to be overcome. 

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Trust me. I get Google. Actually, I am very good at finding the good info and ignoring the bad.

Good news..Surgery already being done is "good". But standard is "radical", not sure what that means. Should have taken entire lung? Really doesn't matter.

Bad news...so rare that there is no standard protocol that I can find. Best I can figure is Chemo like it is small cell seems to work best.

I'll figure it out. Going to watch the cacus in Iowa....its so confusing it will keep my mind off this very unexpected twist.

Luv ya both

Tom

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Hey Tom, 

I second  Michelle's recommendation of finding a doc who has experience with your rare type of cancer.  Before I had lung cancer, I had a gynecologic cancer that turned out to be a rare and aggressive type,for which there was no published data or standard treatment. My med onc proposed doing the usual type of treatment for this unusual kind of cancer. I sought a second opinion and was lucky to find a doc who had clinical experience with this type, and she recommended additional chemo beyond what my med onc wanted to do. And I was lucky that my med onc agreed to do what the other doc recommended since I have an HMO that only covers treatment by their own docs. Part of the reason she agreed to do the additional treatment was the "dismal prognosis"  for my stage 3 aggressive cancer. 

I have had no recurrences or metastases in the almost 9 years since. The treatment was grueling but definitely worth it. I'm now a big advocate of second opinions, especially for anything unusual. BTW, my stage 1 lung cancer was discovered in a routine surveillance CT for the prior cancer.

Bridget O

 

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Hi, Tom. 

I got home last night. 6 days in the hospital. Everything was as expected except I have two 6 inch incisions instead of one. I'll have to ask about that. I had one drain removed. Another will be removed on Monday at the surgeons office if I've made proper progress.

And now we wait for the pathologists. Two weeks max, they tell me. The pulmonologist says it's okay for me to be optimistic.

I live in PA and they've made pain management a joke because of the opioid crisis. Having been through a major surgery, I only need two weeks respite from the pain. They gave me 28 50mg Tramadol pills to last the next month.

I'm glad things went well for you and hope they keep the treatment as practical as they can.

Best,

Glenn

@TJM

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