No diagnosis yet

[LyndaT]

Tom so sorry to hear that.  I wish you the best of luck.

I saw pulmonary doctor today and he does not like the looks of the nodule and says chances are it is cancer.  It is round, sort of, more sqaure as there are some points in the corners.  It is solid.  He was pretty shocked that the radiologist recommended waiting 3 months.  His recommendation is for a fine needle CT guided biopsy.  I am seeing a thoracic surgeon tomorrow to see what he thinks.  I am leaning toward a resection and biopsy during that procedure to see if they need to remove more.  I just need this suspicious, concerning node out of me!  I am not waiting and watching so it can grow more.  He said it would be stage 1A at this point and very curable.

[LouT]

Lynda

I believe you're getting good advice from the pulmonologist.  In my case I had the CT Guided Biopsy but they couldn't get at my nodule because it was so small.  So, I had the resection (wedge) procedure and then they confirmed cancer and removed my lower right lobe.  After surgery, all my lymph nodes (locally and regionally) were clean and nothing else showed so my cancer was staged at 1a and that is a good place to be.  So far my 3-month scan was clear and clean so I am considered NED.  If they can do the CT Guided Biopsy it is worth doing since the resection is really major surgery and most of these tumors are not quick growing.  But, you can decide with your treatment team which course you'd like to take.  I'm glad that you are actively involved and pushing ahead.  You always need to be your own best advocate.

Please keep us updated and we'll all be pulling for you.

Lou

[Curt]

@LyndaT I had an 8mm spiculated nodule that had an inconclusive uptake on the PET scan.  I watched it for a year.  I have a pretty significant family history of lung cancer.  A year in the doctor said that I should just take it out.  I was 42.  If it wasn’t cancer then the procedure would be pretty easy, if it was the recovery would take a bit longer but I wouldn’t notice a difference in quality of life (unless I wanted to run a marathon).  Given my family history I opted to have it removed.   It turned out to be stage 1 NSCLC Adenocarcinoma.  They removed my upper right lobe right then and there.   Surgery was not as bad as I imagined and recovery has been good.  A few small lingering issues but no follow up treatment and NED since.  Cancer, lung cancer in particular, is aggressive.   The earlier and move aggressive you can deal with it the better in my opinion.  I’d go through all the steps to get as much info as you can to determine what it is, then go after it with as much as you feel comfortable throwing at it. 
 

I really hope there are more definitive diagnostic options for this in the future.  I find the process of diagnosing lung cancer for early stage patients to be very archaic.   A bunch of fuzzy scans and dated tests.  I’ve read some more promising techniques are on the horizon.  I hope some of them come to fruition.   
 

Hang in there.   

[LyndaT]

Saw the surgeon this morning.  He basically has no doubt this is cancer and believes it is Adenocarcinoma Stage 1A.  He says I need a total lobectomy because the tumor is too deep to resect, biopsy, and then decide.  He says a needle biopsy is not recommended as he thinks this needs to come out no matter what based on what it looks like.  He will remove the lobe and the surrounding nodes with robotic surgery.  Based on the PET he expects the nodes to be clean.  He believes the surgery alone will be curative and no further treatment will be needed.  He said there is a chance they remove my lobe and it comes back negative, but that chance is less than 10%, and not worth the risk of waiting.  My surgery is schedule for March 12.  Really still trying to wrap my head around this, I am kind of numb right now, but having a plan does feel better than not knowing.  

Before all of this happened I had a business trip to London and Paris, leaving tonight and coming home Wednesday.  I am going.  I feel like this will be good to keep my busy and hopefully take my mind off this for a few days.  Not sure though, this could be a big mistake too  

[TJM]

This is really awesome news. As you come to grips with the whole lung cancer thing and become more educated I think you will agree. It is close to the exact diagnosis I thought I had. Lobectomy went really well for me and I would seriously be looking at returning to work shortly if things hadn't changed. In fact...I would most likely be planning a trip to Italy soon. But not now.Dont even worry about what happened to me. It is EXTREMELY rare.

You still have a challenging journey ahead. Trust me...if my VAT was minimally invasive I would not want "maximally" invasive. But it is very manageable and you should breeze thru it. If your lungs are otherwise healthy (as mine are) I dont think you will notice any breathing issues.  I am very happy for you.

Peace

Tom

[Tom Galli]

Lynda,

My suggestion: go in your trip.

Living with this disease is our ultimate goal. I wasted 3+ years fretting about treatment and outcomes. I could have enjoyed that time. The object of lung cancer treatment is to extend life. Enjoy the extension both before and after treatment. 

Stay the course. 

Tom

[LUNGevityKristin]

So glad you have a plan to move forward.  Enjoy your trip, London and Paris sound amazing even if it is for business!

[Lisa L]

I’m watching your story pretty close, I have 9mm nodule in left lung found a year ago, said spiculated.  I freaked out to say the least thought I had 6 months to live, was a total mess.  I found this group and immediately calmed down and felt so loved by a group of people I had never met.  First thing I did was get a fab pulmonologist, he ordered a Pet and it came back no uptake at all, had a ct 4 months later  and nodule was the same so had ct 4 months later and again the same so my pulm says it’s either benign or cancerous but indolent and might never even hurt me in my lifetime, I’m 53.   I have another ct scheduled at end of month but guess what insurance denied it so got to go through the whole loop hole and prob will have it end of March, I’m fine with that and My pulm is fine with us continuing to scan probably forever even if I would have to pay out of pocket.  I’m so glad you found this group, I’m glad you have a good team with a plan, just wanted to share my story. Love and Light ❤️

[Curt]

@LyndaT surgery and recovery won’t be anything like you at imagining.  I postponed my surgery a month so I could go on a planned family vacation.  
 

Enjoy London.  If you have questions on surgery when you return ask away.  

[BridgetO]

Hi Lynda, Your situation sounds a lot like mine. I had my lobectomy based mostly on my doctors' opinion that my nodule was likely to be cancer based on its appearance. It was in a place where it couldn't be biopsied without the lobectomy. I had surgery by VATS. Sure enough it was Adenocarcinoma 1A.  I thought the surgery was fairly easy as surgeries go. My recovery was fairly fast and I have no evidence of disease more than 3 years later. Please feel free to ask whatever questions you want and tell us what we can do to support you.