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Ted

Am I doing a right thing?

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Good day everyone!
About a month ago by accident, a 1.5x1.3cm nodule was found in my posterior right upper right lobe.
PET scan demonstrated a peak SUV of 6.5
I was told by 2 different Pulmonologists to skip the biopsy & go directly to the lobectomy, because my COPD test was just fine & I "look" healthy enough for it... so that was their recommendation.
It sounds a little barbaric to me to go under the knife without proper diagnosis.
If this is cancer, then maybe I should go directly to treatment like stereotactic body radiotherapy (SBRT) or stereotactic ablative radiotherapy (SABR).
And if it isn't cancer, then this procedure should just eliminate that nodule anyway.
I do have an appointment with a radiology oncologist on 30 of this month.
Am I doing the right thing, not going ahead with the surgery?
Thank you, everyone, for any help

 

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Hi Ted and welcome to a group no one ever wants to join. I can’t speak to your question because I’m the caregiver/advocate for my mom (stage 4 small/non small combo), I will tell you this group has a wealth of knowledge and experience with lung cancer. You will receive replies from people that Know what they are talking about and will help you navigate through this. Their compassion and empathy is in incredible. Good luck and best wishes as you make what are some really tough decisions.

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Hi Ted,

Welcome to the family.  We’re sorry that you’re here and glad you found us.  
 

Last year I found myself thrust into this world unexpectedly and have done everything possible to educate myself. What I have learned is early stage lung cancer is indeed a very rare finding.  Experts from the largest cancer treatment centers will say the best shot of eradicating lung cancer in early stages is through surgery which is considered curative.  Anything less can be risky given the high rates of lung cancer recurrence.  

Does this approach seem drastic and draconian? Yes, you bet it does unfortunately the knife is the best weapon in the medical community’s arsenal.  I suspect that is what drove the pulmonologist’s recommendation.  Surgery unlike radiation will provide a molecular analysis of the nodule which could be important  if future treatment is ever needed. 

There have been some members here that had the same choice, they elected surgery not knowing what the outcome was going to be and was glad they did as they are leading very productive lives post op. 

Its a tough decision you face and hopefully the radiation oncologist can help add some clarity to guide your decision.  
Keep us posted and ask us any questions along the way.  Chances are one of us has been there. 
Michelle 

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Thank you very much, Rower Michelle.

I would really like to know if anyone on this forum opted to do what I am considering doing.

Going thru the treatment before going through surgery, and what kind of an outcome they had.

Not even sure what part of the forum to look at.

 Thank you for your kind words.

 

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Hello Ted 

My Doctor told me to have 2 chemo drugs and daily radiation before surgery and more chemo after.  

I was stage 3B,  My tumor because of it's location in the apex of my R upper lobe was named a Pancoast tumor after 

the doctor who started this treatment .  I was diagnosed in December 1997.  I am still here talking to you.  Please let us

know what you decide.  Best wishes.  Hope you also have a Happy Holiday.

Donna G

 

 

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Hi Ted,

Sorry you have to be here, but glad you found us.  I don't believe the doctors are moving ahead too quickly based on what you have described and the SUV of 6.5.  Here is are a couple of things for you to consider:

1.  The "Gold Standard" for early stage NSCLC minimum recurrence and mets is lobectomy surgery.  When caught early enough and when a PET shows that it hasn't spread studies have shown it to be the most effective treatment.  In my case I was at Stage 1a and had my lobectomy in May 2019.  Although I had mild COPD, I have recovered well and am back to a full life with daily workouts and minor impact.  

2.  When they do an open-thoracic biopsy, they will usually take a small wedge from the affected lobe and sample it to see if it is cancerous.  If it were not, they would close you up and then continue to observe the nodules to keep an eye for any changes.  But, if it is cancer, then the lobectomy provides you with the highest confidence of non-recurrence and/or spreading of the disease.  

You should discuss their rationale and what they expect to find.  I believe they will tell you that, based on your PET results, there is is likely a <20% probability that the growth is benign, but please let the doctors explain the probability and the more technical reasons for the information.

I wish you all luck and we all look forward to any updates you have in your treatment process.

Regards,

Lou 

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Hi Ted,

The decision is of course yours alone, but I know you will find terrific resources, help and support on this forum. I certainly did!

It’s helpful to hear others’ experiences, so I will just say I’m caregiver to my husband who had a lobectomy (robotic) in May 2018 having been (correctly) diagnosed with early NSCLC adenocarcinoma (stage 1, but restaged after surgery because it was larger than expected). Both his upper and middle righthand lobes were removed.

We were totally guided by our amazing team of professionals and are grateful that that was our/his decision.

I think the scariest thing about the surgery was that he felt absolutely fine beforehand (apart from an odd little crackle in his chest when he lay on one side) because it was thankfully found so early and he was/is otherwise incredibly fit...so the idea of having to undergo and then recover from major surgery when he was of course going to feel worse for a little while was daunting, however it beats the alternative by a mile!

I wonder if perhaps recovering from surgery is part of your concern? If so, I can tell you that my husband recovered very well and quickly from his robotic lobectomy. He had adjuvant chemo infusions for 4 3-week cycles afterwards (because of the size they discovered during surgery) and was back to all his usual activities including golf within a few weeks of finishing chemo.

Whatever you decide, know that you have found a place to come at any time for info and support.

Do let us know how you are getting on. I wish you all the very best on your journey to full health.

- Louise

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