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Sandra S


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Is this where I go to introduce myself? I couldn't figure that out ! Here goes; 

I went for my annual check up last April and my husband said make sure you have them check that cough. I did. It was cancer. Had the upper right lobe removed in July and underwent chemo through to December. Had a bad reaction to the last Cisplatin and so I never completed the final chem. I have been experiencing different pains here and there and it makes me jumpy thinking "the cancer is back".However,  It's gall stones this time. My left arm also burns, but they can't find anything wrong. Okay, so I am going to go on vacation and  in case this thing comes back I want to go and enjoy myself with my husband while I feel good.

My first CT came back clean but the breast mammogram is suspicious (oh boy). I had breast cancer back in 2010 and when the lung cancer came in 2016 the biopsy showed evidence of both cancers but they decided to go with the more dominant lung cancer . This way they didn't have to called the breast cancer a stage 4 which meant it had spread of course. Initially the lung tumor appeared very small 2.4cm from the first scan. It ended up being nearly 5cm when they removed it. It was tangled up in the scar tissue left behind from the breast cancer radiation and a surgery that was set to take 2.5 hours actually took over 8 hours. Some say the lung cancer may have been caused by the breast cancer radiation (not sure). Some say the radiation was not needed for my breast cancer (overkill) but that is another topic.

I am here because I occasionally have questions and I seem to have no where to go for answers that don't appear standard. I seem to be given these cookie cutter responses  that never commit or satisfy my need to know something. Why am I considered cured of something that only gives me a 30 % chance of surviving the next 5 years from? Cured is not the best word to use. I am here to read what others have to say and listen in general. Just to learn at this time is going be my goal.

Edited by Sandra Sutton
Clarify that this is my introduction. Unsure of procedure for that.
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Welcome Sandra!

We'll give you a straight story but be mindful, we are not doctors. So don't consider anything we say as medical advice. However, that said we are the lung cancer experts, not by education but experience. 

So, let's start with the burning arm symptom. You had cisplatin but didn't mention taxol. Was that your second pairing. If so, taxol is known for causing peripheral neuropathy in the feet and hands but sometimes this extends to legs and arms. In some folks, it is a temporary symptom. My "taxol toes" (our informal name for burning feet) has been around for 13 years. After a total of 18 taxol carboplatin infusions, my doc says it is likely permanent. Read my blog entries in "Stay the Course" and I talk more about how I manage my symptoms on that blog. Unfortunately, I can't link the specific blog because I'm in an airport on my iPhone. 

About cure. We don't use that word because lung cancer often recurs, even after 5 years of "no evidence of disease" or NED which is the term we use. I also wrote a blog on lung cancer persistence (again, can't link to it but you'll see it on the blog tab). 

And survival projections are little more than educated statical guesses. My probability of survival was less than 5% at 5 years and I once had a projection of 6 months to live. Thirteeen years later, I'm still here. Again I have a blog explaining survival statistics and why they are so innacurate. 

Most important, many of us are 2 cancer survivors. I've had both squamous cell skin and lung cancer. Perhaps most important, if I can live, so can you. 

Any place is a good place to introduce yourself.

Stay the course.

Tom 

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Hi Sandra.  I hope you find this forum useful.  Everyone is helpful. We understand where you are. My mindset is to treat lung cancer like a chronic disease with the occasional flare-up.  I was diagnosed in early 2016 during surgery to remove half of my left lung.  We later discovered that the lung cancer had spread to my thyroid, and I also had a separate thyroid cancer.  My treatment for the lung cancer was cisplatin and pemexetred.  I didn't have any treatment for thyroid because they got it all when I had a thyroidectomy.  I was NED for the lung cancer from July to the end of February this year.  I'm in the middle of 6 weeks of radiation and chemo.  Once I wrap this up, I move on and live 90 days at a time between scans.

Please let us know how we can help you walk this path.

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  • 2 weeks later...

HI Sandra,

How are you doing?  I've been thinking about you.  Please post when you can.  Ask away and let us know how we can help.
We are here for you.


Best hopes,

KatieB

 

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Hi, Sandra,

Welcome to LCSC. I am happy that you've already connected with some of our members. We are here to support you and help you find information and resources to help you navigate lung cancer. Please feel free to ask questions, join in the ongoing conversations on the discussion boards, and let us know if you'd like more information about LUNGevity's support and survivorship programs.

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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