Hi Crystal and welcome to the board

I've saved the link to have a read of your blog...I don't have any information on your cancer but just wanted to say Hi.

Have you checked out www.rarecancers.org ? They have a forum and information sources for rare cancers only and you may find someone there who has further info to help you.

Sorry I can't be of any real help

Dizzie x

Thanks Dizzi,

I will look at rare cancers, and I will have a read of your blog too.

Keep weel, and thanks again.

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.

First day of radio today...am scared, thank for your advice Carole!

I'm sure you will be fine today Crystal....report back when you're able to later on

Hugs xxx

Hi Dizzie,

thanks for that!

All went well, but I need ot have a 'head scan' now just in case there is something going on there..my memory is shot to pieces!!!

I don't think that there will be anything sinister there though.

I am hoping that it is only a bit of chemo brain!!! lol!

Carol

I have metestatic vaginal squamous cell carcinoma and have found no one the same and little information. Had 4 ops, 6 chemo and 10 radiotherapy sessions.Any fellow sufferers out there it gets to feel isolating. I too write a blog it helps with the emotions www.diagnosisjournal.blogspot.co.uk