Extrapulmonary small cell carcinoma localized in lymph nodes

caseyjmc
caseyjmc Member Posts: 4
in Rare and Other Cancers #1

Hi, I'm new here and hope to find friends and opportunities for mutual support. I'm a youthful 60 and intend to outlive my mom, who made it to a youthful 98!

I was diagnosed in Sept. 2014 with Extrapulmonary small cell carcinoma localized in my left axillary (armpit) lymph nodes. The only study I could find is http://informahealthcare.com/doi/pdfplus/10.1080/02841860802495370. Has anyone else had a similar diagnosis?

In a nutshell, I found a huge lump that seemed to happen overnight. Turned out to be enlarged lymph nodes that had bunched together tightly in my armpit. the first diagnosis was metastatic small cell lung cancer, but after all the scans, MRI's and ultrasounds discovered no other signs of cancer other than my armpit, it was determined that the small cell was localized, limited, and treatment would be with curative intent.

It is treated similarly to small cell lung cancer but has a better prognosis. I underwent concurrent chemo and radiotherapy (started with one round of chemo: Cisplatin and Etoposide, and began radiotherapy during round 2 of the chemo. 4 rounds total). I finished all treatments the day before Thanksgiving, and was assigned a Survivorship counselor to guide me in nutrition, exercise, etc.

The first round of chemo shrank the lump by ¾, and after 27 days of radiation plus the other 3 chemo rounds, my oncologists believe it is gone. I will be CT or PET scanned in January to see for sure, then every 2-3 months after that for 2 years, then less and less.

For some reason, small cell localized in lymph nodes has an excellent prognosis, compared to small cell localized in an organ. But it is so rare that it is hard to find cases to study and learn from.

Thanks everyone,

Casey

Comments

  • survivingsu
    survivingsu Member Posts: 134 Member
    #2
    Undifferentiated Small Cell Carcinoma Uterine Cancer

    Hi there Casey,

    I did not have your particular cancer, but I did have undifferentiated small cell carcinoma of the uterus 5 years ago when I was 50.  I did the concurrent chemo/radiation treatment, then had surgery and follow-up chemo.  I stayed away from the internet during treatment because the studies were out of date, few, and dismal.  My doctors indicated my cancer was very rare and very aggressive.  Like you, I also had CTs every 3 months which graduated to every 6 months, and just recently I no longer need to schedule CTs unless I have any symptoms or my labs or C125 indicate a need for further scans.  Just wanted you to know that they are making great strides in dealing with all kinds of small cell cancers.

     

    Sounds like you are doing great - that's awesome!!!

    Best wishes to you, and Happy holidays!

    Susan

  • survivingsu
    survivingsu Member Posts: 134 Member
    #3
    Undifferentiated Small Cell Carcinoma Uterine Cancer

    Duplicate - please see next message

  • kimpeijnenburg
    kimpeijnenburg Member Posts: 1
    #4
    Extrapulmonary small cell carcinoma localized in lymph nodes

    Dear Casey,

     

    I am very sorry to hear about your diagnosis. My mother, who is 58, has exactly the same diagnosis. The has small cell cancer, and the only place where the cancer was found is in the lymph nodes in her neck. They searched for the primary origin but couldnt find anything. This of course doesnt necessarily mean it isnt there, as the imaging apparently can only see tumors bigger than 5 mm. 

     

    My mom was diagnosed May 2014 and she had 4 rounds of chemo and following that a month of radiation. Her tumors are entirely gone. Now she has to have checkups every 6-8 weeks. 

     

    The only thing I could find is the artikel you refer to. I worry that maybe the lymphnodes should have been removed. Did you have surgery? Did you discuss this option with your doctors? What did they recommend? My mother lives in The Netherlands, and they never suggested this to her (not that I know at least). Do you have any more information, than just the article. I looked at uptodate.com, however, I couldnt find much. 

     

    Thank you so much for posting your story.

     

    All best,

    Kim

  • caseyjmc
    caseyjmc Member Posts: 4
    #5
    kimpeijnenburg said:

    Extrapulmonary small cell carcinoma localized in lymph nodes

    Dear Casey,

     

    I am very sorry to hear about your diagnosis. My mother, who is 58, has exactly the same diagnosis. The has small cell cancer, and the only place where the cancer was found is in the lymph nodes in her neck. They searched for the primary origin but couldnt find anything. This of course doesnt necessarily mean it isnt there, as the imaging apparently can only see tumors bigger than 5 mm. 

     

    My mom was diagnosed May 2014 and she had 4 rounds of chemo and following that a month of radiation. Her tumors are entirely gone. Now she has to have checkups every 6-8 weeks. 

     

    The only thing I could find is the artikel you refer to. I worry that maybe the lymphnodes should have been removed. Did you have surgery? Did you discuss this option with your doctors? What did they recommend? My mother lives in The Netherlands, and they never suggested this to her (not that I know at least). Do you have any more information, than just the article. I looked at uptodate.com, however, I couldnt find much. 

     

    Thank you so much for posting your story.

     

    All best,

    Kim

    Extrapulmonary Small Cell localized in lymph nodes.

    Kim,

    Sorry this is so late.

    The doctors said that surgery for this kind of cancer did not show a better result, and that the chemo and radiation therapy was best. Removing lymph nodes unnecessarily seems to result in problems later on.

    I am now 7 months past treatment, and two subsequent 3-month CT scans and physical exams have been clear. I feel great most of the time, just have occasional bouts of fatigue. I am a Dragonboat racer and have taken meditation, nutrition and exercise classes to keep up my health.

    How is your mother doing? You and she are in my prayers.

    Casey

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