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Diana

Non-small Cell - 4.5 years later small cell - anybody?

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Hi everybody!  I am a newbie on the forum although I have been a member of LUNGevity for several years and have attended the Hope Summits in Washington, DC.  I am a 58 year-old female who was diagnosed with non-small cell stage IIIB in October 2014.  I had a very large tumor in my upper right lobe pressing on my vena cava.  Anyway, following radiation, chemotherapy, a lobectomy, oxygen therapy and rehabilitation, I had no evidence of disease for 4.5 years.  My routine CT scan in April of this year showed a slight change in my left bronchus.  A PET scan was ordered and that particular area is the only area that lit up.  I had a bronchoscopy and biopsy which initially came back as negative from pathology.  However, my slides were sent for further evaluation and that is where the small cell lung cancer was diagnosed.  I am told it is at limited stage.  This is in my "good" lung that had no no evidence of disease previously!  Do any of you have experience with non-small cell followed by NED, then diagnosed with small cell years later?  I realize attitude is extremely important and I have always been a very positive, upbeat type of girl, but this diagnosis almost hit me harder than my previous!  I am currently being treated in chem with Cisplatin and Etopiside three days week every three weeks and radiation every day, Monday through Friday for seven weeks.  Thank you in advance for any information any of you can provide! 

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Diana,

I'm sorry for your news... I can only imagine how upsetting the diagnosis was. That's understandable. I don't have experience in this to share with you (recent lobectomy only)  but hope that someone can share info with you. I'd be curious - as I have been curious if this type of situation arises very often.  It sounds as if your follow-up care  has been thorough which is a good thing, as well as getting immediate treatment to address this.  Thinking of you and hope you'll get some answers here...

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Thus far, I have had no luck connecting with anybody that has had NSCLC and following a period of NED, diagnosed with SCLC.  I have joined several different forums hoping to connect with somebody.  The best I have come up with is that this is not unheard of, but I am getting the feeling it is relatively rare.   Since I have reached out to multiple organizations with no fellow NSCLC survivors later diagnosed with SCLC, I am starting to wonder if I am an oddity! 

That said, I welcome the support of this SCLC community and am hoping to hear from you all with tips and tricks!  I officially lost my hair and had a shaving party last night.  No tears as I have been through it before and knew what to expect!  Onward!!!

 

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Have you had any genetic testing done?  In some of the EGFR groups I’m  in people do talk about developing TKI (drug treatment type) resistance and NSCLC transforming into SCLC.  

Onward!

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Hi I dont have any experience in my cancer going from nsclc to sclc but I was treated for a sarcoma cancer in 2012 and during a surveillance scan a nodule had grown slightly from being stable for the previous 4 years and sarcoma will often spread to the lungs that's why they keep an eye on it but my point is that my lung cancer was a primary cancer so it's possible to get 2 types of cancer . Hopefully someone with the same as you will chime in with some advice and knowledge 

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On 5/21/2019 at 1:19 AM, albertstanley said:
On 6/16/2019 at 10:55 AM, Diana said:

I had a bronchoscopy and biopsy which initially came back as negative

So that really happens??? I ask because my husbands doctors have been convinced all of the nodules and cavitated nodules he has in his right lobe are fungal - yet he has literally been tested for everything since 3/21 - and all results are negative. When he has his bronchoscopy on 4/15 - pathology also said negative for malignancy - is it possible they were wrong and that is why all of his "fungal and bacterial" tests are negative?? 

 

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I haven't had genetic testing done.  I wasn't sure if this would be considered transformed to SCLC after NSCLC since there was such a period of time with NED.  The term transformed has not been used for my case as I was told this is a new cancer 4.5 years after my previous cancer was removed, but maybe I need to ask more questions and I will. 

Yes, initial pathology reports indicated no cancer, but my slides were sent for further testing at Mayo which is where the SCLC was diagnosed. 

Thank you all of you for your responses.  Right now I am just swimming in a lack of information for situations such as mine.  While I can find adequate information on both SCLC and NSCLC, I am finding basically nothing on cases similar to mine. 

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Hi Diana

I have only recently started my cancer journey, so you would have so much more experience than I.  It sounds like they caught yours very early this time and they have made so many advances in the past few years that I am sure it will be address relatively promptly.

Your strength has given me hope.

 

Kind regards

 

Jane Lee

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On 6/16/2019 at 9:55 AM, Diana said:

Hi everybody!  I am a newbie on the forum although I have been a member of LUNGevity for several years and have attended the Hope Summits in Washington, DC.  I am a 58 year-old female who was diagnosed with non-small cell stage IIIB in October 2014.  I had a very large tumor in my upper right lobe pressing on my vena cava.  Anyway, following radiation, chemotherapy, a lobectomy, oxygen therapy and rehabilitation, I had no evidence of disease for 4.5 years.  My routine CT scan in April of this year showed a slight change in my left bronchus.  A PET scan was ordered and that particular area is the only area that lit up.  I had a bronchoscopy and biopsy which initially came back as negative from pathology.  However, my slides were sent for further evaluation and that is where the small cell lung cancer was diagnosed.  I am told it is at limited stage.  This is in my "good" lung that had no no evidence of disease previously!  Do any of you have experience with non-small cell followed by NED, then diagnosed with small cell years later?  I realize attitude is extremely important and I have always been a very positive, upbeat type of girl, but this diagnosis almost hit me harder than my previous!  I am currently being treated in chem with Cisplatin and Etopiside three days week every three weeks and radiation every day, Monday through Friday for seven weeks.  Thank you in advance for any information any of you can provide! 

Hi Diana,

My hubby had NSCLC inoperable stage III-C. He is being treated with the same chemo as you. He does 6 days with 3week intervals and starting radiation M-F for 8 weeks. He also has upper right lung mass with 5 lymph nodes malignant. I was kinda glad to read your stuff. I will pray for your outcome to be better.

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I had a really good day yesterday and am feeling pretty good today as well.  I got a lot done yesterday as I felt more energetic than I have for about a month or so.  Tomorrow is all day chemo again followed by half days both Tuesday and Wednesday.  Last round three weeks ago really hit me hard.  I was severely dehydrated and had to get IV fluids, my white cell and platelet counts were down so they had to stop radiation until they came up, I had extreme nausea and I was pretty sluggish overall.  I am hoping this round goes better.  I am drinking lots and lots of water today and will do so for the next few days.  I sure don't want to get dehydrated again.  I could hardly move!  I am getting a CT scan Tuesday to see if the radiation and chemo have shrunk my tumor any so that they can narrow their field for radiation. 

Thank you all for your responses, positive thoughts and prayers.  I keep all of you in my prayers as well.

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