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Hello, all. Thanks for sharing.


Maryloumoo

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Hi. I’m Marylou but most call me moo. 
I’m happy to have found this forum! I’ve lurked for a time and already feel more informed that I have at any time speaking with doctors and surgeons. 
 

backstory: I had a pelvic cancer dx in 2018. Had surgery, chemo/ rads. Recently I had a fullness feeling or just a ‘not right’ feeling in the area of my surgery. On my regular oncologist visit, I mentioned it , so onc ordered a CT scan. That scan showed a lung nodule that was 7mm. When the onc told me about this she said ‘ it was 4mm last time’ which was only a few months prior as that was just my regularly scheduled scans. It was never mentioned to me or in the report that there was a nodule. 

since it’s grown she says, we will do a PET scan. Never had one before. I also have rheumatoid arthritis so, at my very first appt with her I asked about PET, she said, nope. Everything will lite up because of the RA.

I did the PET scan. The nodule did not lite up. (Hip did). Onc recommended we do a CT aim three months. Did that and now the nodule is 1 cm. Lower right lobe and that’s all I know, really.

onc sends me to a thoracic surgeon in an entirely different cancer center whom she used to work for. Cannot express how weird this was for me. Does she not feel confident where she is now or does she not want to be bothered? Who knows. 
met with surgeon and he says right off the bat, no needle biopsy, no bronchoscopy biopsy, he said wants to do a wedge resection and of course pathology immediately and if it’s cancer, Mets or new for me, he will do the lobectomy.  
it has not been scheduled, I am freaking completely out to the point I cannot function. I have hives, I get sick when I eat, can’t sleep. I’m just mortified. One time was enough I’m sure all of us can agree. At any rate, I’ll be posting and seeking support as I go through this. It’s so nice to feel like I’m with people who get it even though I am so sorry we all have to know each other this way. Thanks for reading!  

Edited by Maryloumoo
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Marylou,

Welcome here. It is sad you are going through this saga on the verge of Derby Day. Not only is the event a fine horse race, the Commonwealth is a marvel to behold in springtime.

Here is our knowledge base on thoracic surgery for lung cancer. You will note in reading in the category "What are the different types of surgery used in lung cancer", "a lobectomy is the most effective surgery even when the lung tumor is very small." Why? Because recurrence is very common in lung cancer. How common? This might answer. The cited study reveals 33-percent chance of recurrence for diagnosed stage IA and IB patients after "successful" treatment. 

If you have an active tumor in your lower right lobe, chances are it has affected areas closely adjacent to the tumor site. That is why the entire lobe is normally resected. I know a lobectomy seems extreme for a small tumor but if it were me, and having experienced 5 recurrences after "successful" treatment, I'd want your treatment experience to be "one and done. A lobectomy maximizes that probability.

I'd ask for adjuvant chemotherapy after surgery. Often this is considered optional for stage IA or IB diagnosis, but I'd want to do everything I could to eliminate this problem one time, the first time. This chemo is effective in killing tumors in your blood vessels and lymphatic systems, and therefore maximizes your probability of one time treatment.

Also ensure your surgeon submits the resected tumor for biomarker laboratory testing after the pathologist performs a histology biopsy in conjunction with surgery. This will identify if your cancer can be treated with targeted therapy and or immunotherapy if you experience a recurrence. 

Stay the course.

Tom

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Hi Moo,

Thanks for sharing with us, but sorry you have to be here.  Tom has already given you a great amount of good information. Like you, my LC was discovered via a scan.  Then a wedge was done and a lower-right lobectomy.  That was on May 2nd 2019.  Since that time I've had numerous scans and tests and so far I am NED (no evidence of disease).  I particularly like Tom's recommendation on adjuvant treatment as I recently read a study that there was a measurable improvement difference in long-term outcomes for those diagnosed with Stage 1b and higher.

In the meantime I wrote a short piece on "Thoracic Surgery Tips and Tricks" which may help you to prepare, get through and recover from a lobectomy, it can be found here.

Please keep us updated and ask any questions you may have.

Lou

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Hi Moo. I can understand why you might be having hives! You've got a lot going on. 

When a plan emerges that makes your head spin, it's probably a good idea to consider a second opinion. Head-spinning is also a sign you may need a little more time to process things and decide whether it's a path you want to take. Does your cancer center have a social worker that might help in this process? 

One lung nodule that is growing is definitely a concern.  It sounds like they have not identified other areas of concern in the lungs or nearby lymph nodes. Have they done an MRI of your brain? Has a radiation oncologist studied the lung scans themselves, not just the report? My genius radiation oncologist always reads the scans of every test (at my request, because I think she is a genius) and talks with me. She also will call upstairs to my oncologist to talk through what she sees.  If there is something somewhere else in your body and they can get biomarkers, it may be that *everything* can be treated by a TKI (tyrosine kinase inhibitor). 

This is hard and scary, but you can do it. Take a breath. Rally your resources, inner and otherwise. You can do this. 

Karen

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Hi Moo,  My situation was not much different than yours is. I had a gynecologic cancer in 2011 and in 2016, a small nodule was discovered in my right lower lobe. I had a follow up in a few months and iit had grown slightly. At that time I had a PET and nothing lit up. My pulmonologist  told me that the nodule didn't have the characteristics of a metastasis, but that it could be a new primary lung cancer. Because of its location it couldn't be biopsied by needle or bronchoscope, nor by wedge, so I agreed to a lobectomy, which was done by VATS (video assisted).  It turned out to be an adenocarcinoma (NSCLC- non-small-cell lung cancer) with a diameter of 1.2 cm. It was stage one, and no further treatment was recommended.

Since my lobectomy, i've been NED (no evidence of disease).

Here are a couple of things I'd suggest in your situation. Slow things down a bit-a few weeks to get more information and feel settled about the treatment plan.  Consider seeing a pulmononlogist if you haven't already. Mine was great at explaining what she saw on the CT-- she looked at the actual images and not just the radiologist report.  Get a second opinion fro another surgeon. Ask  why they (pulmo and surgeon) aren't recommending a biopsy by needle or bronchoscope. That is pretty standard unless (as in my case) there's a reason it can't be done. 

If you end up needing to have a lobectomy, know that most of us who have had one by VATS or robotic surgery have found that it's fairly easy compared to other major surgeries. If the surgeon is suggesting open surgery (thoracotomy) rather than VATS or robotic, I'd want to hear a very good reason why. 

Hang in there! you can do this. Ask us whatever questions you have and let us know how we can support you.

 

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On 3/25/2022 at 12:13 AM, Maryloumoo said:

I also have rheumatoid arthritis so, at my very first appt with her I asked about PET, she said, nope. Everything will lite up because of the RA.

Hey there Moo. Super great advice already given in this thread so I won't be repetitive. 😊 The statement that I quoted above really jumped out at me. I have RA and Sjögren's syndrome and it just so happens that my rheumatologist was the first one to suspect I might have cancer due to my minor finger clubbing. He saved my life by sending me off to get x-rays of my joints and throwing in an extra chest x-ray. Long story short, chest x-ray found a suspicious mass. After a PET scan, biopsy, several MRI's I was diagnosed with NSCLC T2b, N0, M0  IIB. Had a lobectomy and then four rounds of adjuvant chemo and am presently NED (No Evidence of Disease).

My (head to toe) PET scan only lit up on my single lung tumor. So I am not sure why your doc said that "everything will lite up". Please get a second opinion on that. 

Wishing you all the best and please keep us updated on your progress!

 

~~Kimberly

Edited by WalkingHorse
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WalkingHorse, kimberly-  thank you!  
my onc is kind of weird. She also has RA and seemed to think it’s not all bad, which it isn’t, however, I believed her when she said everything would lord up because I felt lit up lol! 
After my PET for this lung nodule, I saw for myself that what she said wasn’t accurate at all. I’ve only ever seen her once on my first visit and since, I’ve only seen the NP. I like the NP a lot but feel like especially now, I would like to see the actual doctor. 
She referred me to a whole separate cancer center, one she worked with previously. I am glad for that because this surgeon is one of the best thoracic surgeons in the country, it just makes me wonder if I should switch altogether. 
I’m sorry you have to deal with the autoimmune mess as well. It’s no picnic. It’s very comforting to know I’m not alone although I wish better for all of us. ❤️

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