TJM Posted January 23, 2020 Share Posted January 23, 2020 Quick synopsis. In 2004 during an exam for suspected walking pneumonia the X ray found a small circular mass in lower right lobe. Had recently lost my brother to lung cancer and was a smoker so the Dr suggested a PET scan. As they say..it did not light up so watched it for two years with no change and I forgot about i t. Fast forward to last October and again I thought I had walking pneumonia. After two round of antibiotics I still had a wheeze and felt fatigued. I suggested to my NP to have a look at my right lung. Had a CT scan late December and got a call on the Friday after New Years that I had a 4.9 cm spherical mass. Caught me by surprise for sure. Luckily I got into a pulmonologist within the week and reviewed CT scan. She was very good and said it was a slow growing carcinoid tumor and maybe some localized lymph node involvement. She got me appointments for a PT/CT with Dotanate tracer, complete blood work up and pulmonary function test. She also told me that if results came back as she hoped then she would skip biopsy and go straight to the VAT surgery. Got the Pet Scan last Friday (always on a Friday eh) and she called me early Sunday morning to review the results. I believe she said there was a small indication of another spot in my middle lobe...but both the large mass and nodes lit up on PET. Sleeps been tough so I wish I would have kept notes. Tomorrow will tell the story I hope. I can tell that both her and the Surgeon are big fans of VAT...but both the size of the mass and the other spot make me wonder if an open surgery would be better? Rather do a little tougher surgery and get it right. 58 year old Male, non smoker for 4 years and in pretty decent shape. Wish me luck...and best of luck to everyone else. Doubt I'll get much sleep tonight. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted January 23, 2020 Share Posted January 23, 2020 I suggest you see what your surgeon has to say, and ask the question about whether whether an open surgery would be better in your case. If the surgeon recommends VATs and you aren't convinced, you could get a second opinion. I do wish you luck! Link to comment Share on other sites More sharing options...
TJM Posted January 23, 2020 Author Share Posted January 23, 2020 That's the plan Bridget. Thanks for the well wishes. Tom Link to comment Share on other sites More sharing options...
TJM Posted January 23, 2020 Author Share Posted January 23, 2020 Based on how little sleep I got tonight in anticipation of the surgery consult I cannot imagine how I will be if surgery is scheduled. Bunch or stuff running through my head...the biggest one being when will the surgery happen? In days or weeks? Also...to top it off, my wife slipped on stairs to the garage and most likely tore her ACL or Meniscus and is essentially immobile. She gets the results of MRI today but won't be with me for surgeon visit...which is going to kill her. Not to mention both of us will likely be off work for awhile. Stress breeds stress. But then again...what doesn't kill you makes you stronger. Tom Link to comment Share on other sites More sharing options...
Curt Posted January 23, 2020 Share Posted January 23, 2020 When it rains it pours Tom. Good luck with your consult today. I had to do my initial consult alone as well. Wasn’t fun. Any questions just ask. Link to comment Share on other sites More sharing options...
TJM Posted January 23, 2020 Author Share Posted January 23, 2020 Thank you Curt. Been reading a ton of posts tonight and its helpful. I am guessing that I will feel better once I understand the plan. I'm an Engineer and Manager. Use to solving problems...not being the problem. Will know soon. Peace. Tom Link to comment Share on other sites More sharing options...
Curt Posted January 23, 2020 Share Posted January 23, 2020 The uncertainty and not knowing was the hardest part for me as well. Once I knew what needed to be done I didn’t think about it much...until a day or two before surgery. An engineer/manager personality will suite you well on this journey. It takes a fair amount of persistence to see it through. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 23, 2020 Share Posted January 23, 2020 Tom. I'm also an engineer and was the worst kind of patient. Problem solving is my business, but my skills only work when solving problems with things. They have no impact on people and their (my) disease. With the exception of knowledge about statistics, applying engineering skills to surgery, chemotherapy, doctors, nursing and progression produced mayhem. Initial treatment of lung cancer is pretty straightforward. Surgery is the preferred first and best option. If not surgery, then chemoradiation following a well established formula called a national standard of care. But if these treatments do not arrest, treatment transitions from established procedure to medical art. The medical oncologist is the artist and tries to guess which of the available methods might work. It is an educated guess but lung cancer mutates very quickly to combat drugs and that is why it is so dangerous. Reading into our disease is essential knowledge. Here is a good start. Welcome here. You may have a bunch of questions after your surgical consult and this forum is a great place for answers based on actual experience. Stay the course. Tom Link to comment Share on other sites More sharing options...
TJM Posted January 23, 2020 Author Share Posted January 23, 2020 Thanks Tom. I read you were a Civil Engineer. I am a Chemical Engineer....dont hold it against me. Oldest son taking my wife's spot and driving. He is graduating as a Computer Scientist this spring. Think we got it covered! Link to comment Share on other sites More sharing options...
D iane Posted January 23, 2020 Share Posted January 23, 2020 Hi. Great that your son is going with you. It's wise to always have another set of ears at such appointments. How do they know for sure it's a carcinoid? That would be my 1st question. I've read up on those as I have a friend with that type. She did not have surgery, but gets some sort of hormone shot. I don't really know her stats, sorry. I just know it's hormone driven, rare type cancer, more prevalent in women than in men and mostly around our age. Please let us know how it goes. Hopeful that it is and you do get a good prognosis. Link to comment Share on other sites More sharing options...
TJM Posted January 23, 2020 Author Share Posted January 23, 2020 They will not know for sure till after the surgery but based on the shape, slow growth and history it 90% probability. Also I have some unique symptoms that are very indicative of carcinoid tumors. Rare in the lungs....usually in the GI track. Link to comment Share on other sites More sharing options...
TJM Posted January 23, 2020 Author Share Posted January 23, 2020 Great news in my opinion. Surgery scheduled for next Tuesday. Will be a VAT to remove the lower lobe of my right lung. My lung capacity is excellent now so Surgeon is not concerned about my lung capacity after Surgery. He is confident that this will be curative but will still discuss postoperative Chemo after Surgery. Less stressed now. Probably last a day or two then I'll stress the surgery. Thanks to all for the support. Now I need information on how to quickly repair a torn meniscus on my wife. 👍 Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 23, 2020 Share Posted January 23, 2020 Rockin great news! Link to comment Share on other sites More sharing options...
BridgetO Posted January 23, 2020 Share Posted January 23, 2020 Glad to hear you're all set! Link to comment Share on other sites More sharing options...
LouT Posted January 24, 2020 Share Posted January 24, 2020 Great news TJM...Curt, I and others have often posted about our lobectomy surgery and recovery, so there is great info for you to read for pre and post surgical guidance and letting you know what to expect. You're going to do well on this. Lou Link to comment Share on other sites More sharing options...
TJM Posted January 24, 2020 Author Share Posted January 24, 2020 Counting on it. I'm sure I'll have questions going forward after I get an actual stage of the Tumor and the question of Chemo comes up after the procedure. Will sleep well tonight. I'll stress about the actual Surgery starting.....tomorrow night? Thanks all. This is a very helpful and informative board. Best of luck and health to everyone. Tom Link to comment Share on other sites More sharing options...
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