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Diana

non-small cell to small cell

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Hi all!  I was recently diagnosed with limited stage small cell lung cancer following a routine CT scan.  I was diagnosed with non-small cell squamous cell 4.5 years ago.  Following radiation, chemotherapy, surgery, and rehabilitation, I spent 4.5 years living a productive life with no evidence of disease.  During this time, I lost my father to non-small cell squamous cell  lung cancer on Father's Day two years ago.  He was diagnosed exactly one year after I was and lived only a little over a year and a half following his diagnosis.  Needless to say I was absolutely dumbfounded when, following a PET scan and bronchoscopy/biopsy, I was informed of my new diagnosis.  I am a 58 year-old female and have attended LUNGevity Hope Summits tin 2016 and 2018 after my first diagnosis in October 2014.  I am currently undergoing chemo and radiation for my new diagnosis.  Folks, I am having a tough time with this one. When diagnosed with non-small cell, I was staged at IIIB and was not given much of a chance initially.  Through the work of some amazing surgeons at Mayo and extensive rehabilitation, I was even able to get off of oxygen,  get my life back and return to teaching full-time.  I am so grateful and have always counted my blessings, but I honestly am now so heartbroken.  Thankfully, this cancer was discovered early  due to routine scans in my follow-up care.  While I do realize it could be much, much worse, I can't help feeling just a little bit sorry for myself.  Are there others with similar stories of being diagnosed with small cell years after diagnosed with non-small cell?  I am reaching out for support, encouragement, and friendship.  My new friends, I thank you! 

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Diana,

A small cell DX after surviving late stage non small cell, no I didn’t have that experience and thank the Lord!

Unfortunately, because of your survival experience, you know the treatment drill. You also know the drama, devastation, and depression that accompany our malady. Thankfully, immunotherapy is moving the survival needle to the right for small cell.  

But, all that said, we are left with but two things we can influence in our disease: hope and attitude. I am so very sorry you have this burden and we’ll help as best we can, but the battle is yours to fight. I say, put on your battle rattle, lock and load, and move out to decisively engage your small cell enemy. Believing you can win is the key to victory. 

Stay the course. 

Tom

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Tom, thank you so much for your response!  Yes, I realize attitude is a BIG part of our journey.  That is one of the things I had working in my favor at my initial diagnosis when the prognosis was not good considering the size and location of the tumor.  I was so near that 5-year mark and was optimistically thinking, "We got this!"  I am not sure, but I think this may be part of the reason I was so floored when I received the diagnosis.  Initially the pathology report came back as negative for cancer, so I was really getting my hopes up.  Everything was coming back in my favor.  But, my slides were sent off for further evaluation and it was at Mayo that the SCLC was diagnosed.  I am not a gloom and doom kind of girl, which is why I am kind of surprised at my feelings this time.  Of course, this diagnosis is relatively new and I have only just begun my treatment program.  I even still have my hair!  I have always lived my live with hope and optimism and plan to get back to that point as I journey on!  Perhaps, I have just hit a little bump in the road.  Thank you for your time!

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I haven't been here for a while, but I thought I would drop in for a visit!  I am rocking and rolling with this small cell.  I am still working full-time (praise the good Lord) and just had a PET scan last week.  I am going to my oncologist later this afternoon to get the results and see where we are.  Staying optimistic!!! :)

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Great news, Diana! There are a few new(ish) members who were diagnosed with Small Cell, you are a great example of life after a small cell diagnosis! Sending positive thoughts your way for good results today.

Take Care,
Steff

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Hi Diana ... I'm "newish" ... my wife was diagnosed with SCLC in late January. As Steff said you definitely are a great example for my wife to hear about.

May I get some details of your SCLC from you? Staging, first-line treatment, did you have PCI?

Steve

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Hi Steve! 

Due to the fact that I was previously diagnosed with stage IIIB NSCLC, had chemo, radiation and surgery, they were still monitoring me pretty closely since I was still within that 5-year window.  During a routine CT scan 4 1/2 years following my first diagnosis and after being NED for over 4 years, I was diagnosed with SCLC at the limited stage.  This diagnosis was in my previously "clear" lung as my surgery was on the opposite lung (the one in which I had the lobectomy).  Anyway, four cycles of chemo (cisplatin and etoposide) were immediately started along with 30 radiation treatments.

Now about PCI - goodness!  I kept researching and researching this topic as I was back and forth on whether or not to have this done.  I decided I was going to go ahead with PCI and was fitted with my mask.  Right before I was scheduled to begin treatment, my insurance company denied the hippocampus-sparing PCI.  They would approve the PCI, but not with sparing the hippocampus.  I had already decided the only way I was going to have the PCI was if they did, indeed, bypass the hippocampus in the treatment.  I ultimately made the decision to NOT have PCI, but rather go the route of routine monitoring with MRI's of the brain.  I am completely comfortable in my decision although I certainly understand the difficulty people have in making this decision as it is truly difficult.  I will definitely keep your wife (and you) in my prayers.

Now, the results of my PET scan.  There was still metabolic activity, but significant reduction in the size of the tumor!  My labs were good, so I am pretty thrilled!  I feel pretty good, treasure every day and continue to be so grateful for my many blessings!

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