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Susan Cornett

Just need to clear my head...

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By nature, I'm an anxious person so I often just clear my mind by writing or speaking all of those random, whirly thoughts going through my mind.  I've posted a couple of times before and some circumstances have changed.  So here's my story that I just have to get out of my head: I had an unidentified mass in my upper left lobe and a bronchoscopy indicated it wasn't cancer.  Pulmonologist recommended surgery so in February of this year, the left upper lobe was removed and I was diagnosed with Stage IIIa adenocarcinoma.  Seven of ten lymph nodes were affected.  I had an MRI and CT of chest, abdomen and pelvis before I started chemo and the only thing noted was a nodule on my thyroid.  I completed four rounds of Cisplatin/Alimta and side effects were/are manageable.  I had my first post-chemo CT on July 1st and it showed no new areas of concern, since we already knew about they thyroid.  

After chemo, I went to see an ENT about my thyroid.  Biopsy results were inconclusive so surgery was scheduled.  I had a thyroidectomy two weeks ago and last week received my results.  I had papillary carcinoma and metastatic lung cancer in my thyroid.  I blew the oncologist's statistics out of the water.  Less than 5% of thyroid nodules are cancerous and both of mine were.  It is very rare for lung cancer to go the thyroid (ENT has seen it 3 times in 40+ years, oncologist has seen it twice in 20+ years) but numbers mean nothing.  Fortunately there was no lymph node involvement but it does change my staging to Stage IV since those sneaky cancer cells left the lung. When my oncologist told me that the lung cancer staging changed from three to four, I panicked. My brain immediately went to the darkest of places. I couldn't stop crying.  I'm an only child and my husband and I don't have kids, so my first thought was him and then my parents.  What would happen to my parents?  

But then clarity stepped in.  He was changing a number, not changing my attitude or my desire to fight this disease with all of my might or the progress I've made thus far.  I remind myself that the July CT was good and the nodule was the only issue noted when my baseline scans were done prior to chemo.  I have a pet scan in two weeks.  I'm praying that the chemo did its job and killed the rest of those cancer cells and that this scan is also good.

I come to this site every couple of days to see if I can contribute and to read stories of people diagnosed with late stage NSCLC who are still alive, still fighting, still living.  Those stories give me hope and renew my energy to fight with everything I have.

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Skmcornett,

Welcome back.  It has been a while.  Very glad your team found and resected the thyroid.  

Actually, I've read that one keeps their initial stage of diagnosis regardless of further metastatic activity.  So I was diagnosed Stage IIIA or IIIB (on the border) but when the cancer spread to my remaining lung, I was still staged at IIIA or B.  Regardless - just a trivial point.

The important point is you are here, in the right framework, ready to lock-and-load-and-survive-and-thrive!  Good for you!  Go have a good PET scan two weeks hence and come back and tell us the good news!

Stay the course.

Tom

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I do not know if you are a person of faith or not but pray can never hurt.

 

May the Lord bless you and keep you.
May the Lord make his face to shine upon you, 
and be gracious to you.
May the Lord lift up his countenance upon you, 
and give you peace.

Numbers 6:24-26

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Good morning!  I am always lifted by the good news and positive outcomes on this site so I'm here to share mine.  Last week's pet scan is clear.  We reset the clock and do this all again in 90 days.  

Tom - I wanted to clarify my comment about my staging. Oncologist didn't change my staging because he later found mets; they didn't know it was there at the initial staging.  I was diagnosed after surgery as IIIa, before the team knew about the metastisis to my thyroid.  Had they known about that, they would have staged my cancer as IV.  So, for statistical purposes, oncologist considers me a IV.  He told me yesterday, though, that there weren't really any statistics to evaluate my case because it was unusual - mets to the thyroid is so rare and it was a distant mets site and tumors were removed at both the primary and mets sites.  He said my 5 year number is 30 to 40%.  I laughed and told him his numbers mean nothing to me - and he agrees - because I've already skewed the stats with the thyroid issue.

I'm looking forward to walking in the Breathe Deep DFW event and have hopefully inspired my family and friends to dip into their wallets.  

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Skmcornett,

Clean PET scan - wow!  That is grand good news!

You are clearly right about statistics not mattering.  What matters is you've got clean scans, you are NED, and be will walking the park at the DFW Breathe Deep event.  Almost everything else is irrelevant except for one thing - your celebration!

I would be at the DFW event but for a very important life celebratory moment - the birth of my first grandchild.  So take a lap for me.

Stay the course.

Tom

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Tom, 

I'm so sorry you won't be at the DFW event but think that your other plans are much more exciting.  Congratulations on your first grandchild.  By the way, I started your book yesterday and it is wonderful.  Thank you for writing it.

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Hi, Susan. Nothing beats clear scans so ... YAY!!!!!! But I've got a couple of questions. My cancer was discovered by CT > PET scans. Based on the results, I saw a Thoracic Surgeon who showed me the areas of concern and recommended a Mediastinoscopy ... a biopsy of the lymph nodes in the mediastinum. One lymph node tested positive for cancer and because it was on the same side as my affected lung (lower left), I was diagnosed with late stage inoperable lung cancer ... Stage 3A. It was deemed inoperable because it had metastasized to the mediastinum. I'm wondering why your Pulmonologist recommended the removal of your upper left lobe when the bronchoscopy indicated that the mass was non-cancerous, and why the lymph nodes weren't detected/biopsied prior to the lobe removal?? And then to have to deal with your thyroid. Man oh man oh man. You've been through the wringer but meantime ... it sounds like you're doing great and THAT'S what matters most!! You're inspirational!!! :)

- Sherie

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Good morning, Sherie!  I started this adventure with a trip to the ER after coughing up blood.  The ER sent my pulmonologist the CT and performed the bronchoscopy.  Unfortunately, my first CT was one without contrast - I'm a very hard stick and the ER gave up after 6 attempts - but I'm guessing it would have been better with contrast and might have highlighted those pesky lymph nodes.  My biggest question has been how the bronchoscopy missed cancer cells, but at this point, I have to let that go.  The pulmonolgist performed several tests on the tissue sample to find out what it was and when those results were inconclusive, he referred me to the thoracic surgeon  and the surgeon is the one who recommended the lobectomy due to the size of the mass.  The mass made it difficult to breathe and I had started to have successive upper respiratory infections.  As I understand it, the team did not know that the mass had spread to my lymph nodes and they didn't know it was cancer until surgery. I didn't fit the "norm" for a lung cancer patient (another reason why we need to throw out the stereotype).

The fun part at this stage is wondering if every new pain/twitch/difference is the return of cancer.  I don't want to be a hypochondriac but I don't want to ignore anything.  In fact, I went to see oncologist this week because I was having pain in my central chest/sternum area, very near where the tumor was and my first thought was bone mets.  But, as it turns out, my nerves are still regenerating from the February surgery and as I regain feeling in my left chest, I'm now able to feel the pain that has been there all along.  

It's an interesting ride, but I'm damn sure gonna make this ride last as long as I possibly can!

 

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