Jump to content

non-small cell to small cell


Diana

Recommended Posts

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! 

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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!

Link to comment
Share on other sites

  • 9 months later...

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!!! :)

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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

Link to comment
Share on other sites

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!

Link to comment
Share on other sites

  • 4 months later...

Hi Diana,

I am new here too.  Finally had my lung biopsy on Monday, came back as small cell.  I am so scared, depressed too.  All I do is cry but I need to be strong and I need to try harder.  Oncology appointment is Monday.  Good luck to you, it sounds as if you have it handled.  

 

Blessings to you

Link to comment
Share on other sites

Hi Sheryl E,

I'm sorry to hear about your recent diagnosis.  Have you registered for the International Lung Cancer Survivorship Conference yet?  There is a session on Small Cell on Friday that could be very helpful to attend.  https://lungevity.donordrive.com/index.cfm?fuseaction=cms.page&id=1784&eventID=947

 

Link to comment
Share on other sites

Hello again my dear friends!  Wow, how things can change in a heartbeat!  I lost my full-time job due to pandemic cutbacks the first of May and was diagnosed with multiple brain mets two weeks later.  So, I completed whole brain radiation in June.  Things are definitely different in my life now, but still hanging in there and praying.  I go for another MRI of my brain and CT scans of my abdomen and chest next week so we can see where we are right now.  I appreciate all your thoughts and prayers as you are all in mine. 

Link to comment
Share on other sites

Diana, 

I’m so sorry to hear about your job and the diagnosis of your brain Mets. A few weeks ago my dad (Also SCLC) went in to the ER due to some cognitive issues...couldn’t get words out (even thought he knew what he wanted to say) and major lack in short term memory. Unfortunately they were Mets. This all happened a week after we got a NED scan of his chest/abdomen/pelvis, two days before his scheduled MRI check. I hope your radiation treatments are going okay!! My dads less tired than I anticipated and his cognitive issues have cleared up (besides some minor short term memory issues). Keep us posted ❤️

Link to comment
Share on other sites

Hi Olivia,

I am so sorry to hear about your dad.  I will keep him in my prayers.  I, too, had just received encouraging CT's  of my abdomen and chest as well as a bone scan - all clear.  Then the brain MRI came back with METS.  I guess we just never know.  I am hoping the effects of the brain radiation wear off before too long.  I do have balance issues along with a few other problems, but I am not giving up!!  Best wishes to your dad!

Diana

Link to comment
Share on other sites

On 8/13/2020 at 12:17 PM, LUNGevityKristin said:

Hi Sheryl E,

I'm sorry to hear about your recent diagnosis.  Have you registered for the International Lung Cancer Survivorship Conference yet?  There is a session on Small Cell on Friday that could be very helpful to attend.  https://lungevity.donordrive.com/index.cfm?fuseaction=cms.page&id=1784&eventID=947

 

Kristin ... Do you know if there is access to notes, slides, etc. for the Small Cell session yesterday?

Steve

Link to comment
Share on other sites

2 hours ago, MyWifeSCLC said:

Kristin ... Do you know if there is access to notes, slides, etc. for the Small Cell session yesterday?

Steve

Steve, it's NEXT Friday--that's when the Conference starts.https://lungevity.donordrive.com/index.cfm?fuseaction=cms.page&id=1787&eventID=947

 

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.