Neuroendocrine small cell carcinoma of the vagina.

I have recently been diagnosed with this cancer, and would be interested to know if anyone else has the same diagnosis.

I believe that this cancer is rare, and checking the internet has not been too fruitful.

Basically, all it says is that there are only between 19-25 cases recorded in English litreature, studies have been done on 3 people.

Does any one have any further information?

If not, I have a blog that has recorded all my feelings, treatments etc. on a daily basis since diagnosis.

Web site below.

http://www.confessionsofacancerpatient.blogspot.com
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  • Hi last febuary i was diagnosed with secondry cancer in my lymph knowdes in my groin area it baffled my consultant as he could not find the primary tumor although he says this can happen usually if the primary tumor disappears it will leave a mark where it was but in my case i was left with nothing at all so after many tests and scans where he still couldnt find where it was he decided to go ahead with treatment so i got 5 courses of chemo once a week and 8 weeks of intense radiotherapy so i no its some times lonely and confusing when its a rarer type you have but the positive thing is the consultants are all taking an interest and all discuss which road to take in your treatment so stay strong 

  • Hi Elaineh,

    Thanks for that, I have tried the rare cancer site, but to no avail.

    There is very little on the internet.

    I am feeling quite positive.

    Hope that you keep well....take care and thanks again.

  • thats ok i know how it feels even my GP said to me that it must be very difficult to understand because he finds it difficult to understand ! so i know that sometimes it can feel lonely not having someone to *compare notes with * so to speak. After i got my results for my scan in january he told me because its not one of the usual cancers that i will probably never be given the all clear so i think he will be looking for the main tumor forever ! but at least i know that they will always be keeping a close eye on me have you had your treatment yet ?

  • Hi, Elaineh

    I have had surgery to remove the tumour,

    3 x 3 chemo sessions,

    Start radiotherapy tomorrow, 28 days - daily.

    Then I have another 3 x 3 chemo sessions

    Hopfully I get the all clear then, or not as the case may be.

    Good luck with you treatment.

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