Rhabdomyosarcoma

No not yet. Thank you for your support. It is appreciated. Its hard playing the waiting game xxx

Don’t be scared, I had hysterectomy too. That’s the main part xxx

Thank you. I think the hardest thing for me is because I was initially misdiagnosed and since found out I have a secondary rare cancer adensarcoma in the same area xx

That’s the original cancer I was diagnosed with. Is it all contained xxx

Im not sure yet. I am still awaiting consultant appointment since my full hysterectomy. I do not know stage of cancer until all my lab results are back xx

So is it Rhabdomyosarcoma your first original diagnosis xxx

Yes. It was diagnosed after I had a fibroid removal. My care was transferred to a specialist hospital, when they diagnosed me with Adensarcoma as well as Rhabdosarcoma xxx

I’m not sure if this will bring any comfort (it did for me) usually a Rhabdomyosarcoma tumour grows in the arms legs etc & it’s classed as a childhood cancer hence why it makes it so rare to us. I’m 35.  
Mine grew at my cervix so it fell under the category of a rare cervical cancer. These grow places they can’t be reached & only way is to shrink them with chemotherapy THEN they go in & do surgery . So because where mine grew (my tumour was falling out my vagina & I was pushing it back up - after being sent away being told it was polyps) the hysterectomy took it all away which is rare! But it grew where they could go in & whip it out. Sounds similar to yourself. 
 My margin came back less than 1mm - so although the tests showed the cancer came out with the surgery they couldn’t be sure if there was a little sticky cell stuck to a blood vessel - so I done the preventative treatment. 
5 cycles of chemo & the 5 weeks Monday to Friday radiotherapy into my pelvis. 
so the purpose of that was hopefully you’d feel reassured they managed to reach it like mine with the hysterectomy as it wouldn’t usually be accessible Xxx

Thank you for your reply. Your diagnosis does sound similar to mine. Because no one has fully explained the cancer to me and because it is so rare, the information given to me was very brief. And Dr Google is a little too much sometimes. You have definitely helped clarifying things. Im so pleased your treatment has been successful. This forum is such a great help when you are struggling. I have felt quite alone with my diagnosis so far. Thank you so much xxx

I was the same like waiting weeks to find out if the surgery was successful because they didn’t have a clue what this was! In the end they sent my bits to Birmingham to specialists of this kind. You’re definitely not alone! I’m happy to answer anything if I can. Do you have a partner/family? Xxx