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ginnyva

Left upper lobe adenocarcinoma Stage 1A

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I was diagnosed with non small cell lung cancer in December of 2014 by a fine needle aspiration biopsy, and had a left upper lobectomy via a MITS (minimally invasive thoracic surgery) on February 12, 2015. I am 67 years old, retired for 9 years, leading an active life, and had always thought of myself as a very healthy person!   Thankfully there was no cancer found in any of the lymph nodes removed.  I live in Canada but paid for molecular tests on my tumor sample that were done at Johns Hopkins in the US.  (The Foundation One test.)  I have the EGFR mutation, as well as another one (no treatments available yet for the second mutation) but am not having any targeted chemotherapy with EGFR inhibitors at this time.  I have been told that my chances for a cure are 50%.  Initially I had lots of complications while recovering from my surgery: the worst of these was severe tricuspid regurgitation, which seems to be improving thankfully.  I had a CT/PET scan done last Friday (May 15) and do not know the results of this yet.  I choose to think my odds are better than the 50% but get scared when I read of others' accounts. 

 

I am hoping that this website will be helpful in educating myself, providing support to others if I can, and of course getting support from others if needed.  There will be a learning curve in just using and navigating this website as I haven't really used anything like this before. 

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Welcome.  You are really at the beginning of your journey.  You say it is only 3 months since you had your lobectomy?  

It is great that you are thinking of others  and want to help.  I agree.  We need to give , we all need to bond together.

I have survived . Wish they had MITS back in 98'.  Please let us know how your CT comes out. 

Keep us posted.

 

Donna G

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hope your doing well the best way is just dive in and explore the site.. a ton of great info here and good folks who wil get back to you in quick time!!

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Not sure if I'm doing this correctly.  I'm trying to reply to Donna's reply to me. 

 

First of all, I am so encouraged to see that you are still here, having begun your 'journey' back in '98!! 

 

Unfortunately, my PET scan results were not good:  there are two maligant foci that are 13 mm. in diameter, in two mediastinal lymph nodes.  (That is my understanding of the report and what I have been told.)  I am Canadian and have been supplementing our government 'system' with a bit of private medicine as well.  (A company I accessed online + the oncologist I was referred to.)  So, while our system had not done testing of my tumor for mutations, I had it done at Johns Hopkins (Foundation One) and know that I have the EGFR mutation.  As our BC Cancer Agency has a targeted therapy for people with the EGFR mutation, I may be able to get the pills from them.  I guess the bright side is that there is the possibility of such a targeted therapy for me.  I was told, however, (after I had cardiac complications in the hospital) that I would NOT be a candiidate for chemo or radiation because of my severe reaction to Amiodorone (?)

 

Anyway, I'm wondering what experience other forum members might have with the targeted therapy for the EGFR mutation. 

 

I am upset because I had been told I was stage 1A and the ctDNA blood test had been recently negative, and then these two sugar happy nodes turn up on PET scan. 

 

True, at just over 3 months post lobectomy (via minimally invastive method) I am doing very well, feeling stronger every day, and I will just have to take each day as it comes and do what I can to be healthy?!

 

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Hi Ginny,

               Welcome to LCSC,always a pleasure to meet up with new friends here.I wish you every success with your treatments,I was dxd with NSCLC (squamous) with local lymph node involvement in Oct 2008,I was given neo-adjuvant chemo to shrink the tumour in the airway to my upper right lung which if successful would allow me to have surgery to have the tumour removed.Well it worked so well that I had a upper right lobectomy in January 2009 and have received no further treatments since.

       I had the last of my 6 monthly check ups last Feb,my oncologist told me all my results were completely clear,he added,that he could  say with confidence that I was cured,now go away,I dont expect to see you again,we shook hands and parted as friends.

       Today nearly seven years later,I am fully enjoying the life I had as prior to my dx,all my anxieties about re-occurance have melted away like April snow as the poets would say.

       I have since my dx met up with many long term survivors of lung cancer,one in particular was dxd with SCLC and some years later with NSCLC my friend Robert sadly passed away a couple of years  ago cancer free,having survived 20 years.There is hope for us all,I am certainly going to follow in Roberts footsteps.

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Hang in there.  Cancer treatment is a marathon not a sprint.  Try not to get mired in survivor statistics.  Read professor Stephen Jay Gould's essay "The Median is not the Message" for a pragmatic view on survivor statistics.

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Hi Ginnyva, 

Welcome to the message boards. It's nice to read that you have positive energy. Please keep us posted about your test results. Here is a link for more information regarding your type of lung cancer. If you would like to be connected to a personal mentor please reach out to us. 

Experts Blog | LUNGevity Foundation http://ow.ly/NB2s7

 

Wishing you strength and healing. 

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