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Introducing Myself

Susan Kay

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My name is Susan, 56 year-old female, and I was diagnosed with Adenocarcinoma in July 2020.  It was only found because I had been having horrible back pain and after being  told by two doctors and a chiropractor that I was getting older and it sounded like regular muscle pains, I finally insisted on an MRI.  (Imagine that poor ER doc's horror at having to deliver THAT diagnosis after telling me I didn't need an MRI!).  I had to have a pretty horrific spinal surgery to replace a crushed vertebra, fuse several others and scrape lesions off of several more.  The cancer had spread to all three sections of my spine, as well as several other bones (ribs, clavicles, one femur, one shoulder blade).  Fortunately, I have an EGFR mutation and have been taking Tagrisso which has been working.  Tumor markers going down month after month, and just generally feeling better as time passes.  I am completely mobile and feel strong and mostly "normal,"  whatever that is.

I do have a current concern, my back pain has morphed into something different than it has been over the past few months.  I am scheduled for another PET scan later next week, and I am feeling very anxious about the results, even though my tumor markers look great.  

I just read a response to another person's introduction where someone described lung cancer as almost becoming a chronic condition, and not to listen to statistics and certainly NOT Dr. Google!  I find that very encouraging, because, yes, a google search will scare your pants off.

I look forward to reading more.  Thanks!  

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Wow, sorry to hear about your spine issues. But it's so good that you were able to advocate for yourself. So many of us go for months being un- or mis-diagnosed. 

I hope your PET scan turns out well and your tumor markers stay low. My oncologist also pays attention to tumor markers, which give me peace of mind. Hopefully your new pain can be addressed too. 

We are very lucky to have a drug like Tagrisso. If you're not already a member, LUNGevity has a private Facebook group "Tagrisso (osimertinib) Patients & Caregivers Group" for additional support. And you are right about Dr. Google!

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Hi from me too!

Welcome to our community, you’ve landed in the right place.  I’ve been on  ALK targeted therapy for 33 months now.  I’ve learned that off cycle scans seem to come with the territory.   I also had some unexplained back pain several months after starting treatment, had a MRI which showed the pain was coming from something other than cancer.   Your insight about “ normal” is spot on as the anxiety leading up to scans, particularly those not part of the usual surveillance protocol is alway nerve wracking.  And yes, that’s normal.  It typically takes me a day or two to get back into the groove after a scan.  
Please keep us updated.


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