Trying to stay positive!

Hi I was diagnosed with ACC of the vulva 7yrs ago. It spread to my lungs in February, which I had removed. But has now been found again in the original site. I'm facing major surgery and potentially a colostomy and urostomy. I'm trying to stay positive but its hard at times. I wondered if anyone had been through the same or similar? 

  • Hi  I'm sorry to read that you're now facing major surgery due to the recurrence of your ACC. It is so hard to stay positive at time like this but by joining the Online Community you'll be able to chat with people in a similar position. I've tagged your post to the Community Champion   but I do know she's away at the moment so won't get back to you directly.

    I just dropped by and noticed you've not had a reply to your post here where are fewer subscribers but you've received a reply in the other group and hopefully more in the coming days. 

    It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep writing the same thing over and over. You can amend or update it at any time. 

    To find more information covering diagnosis and treatments there are pages covering most types of cancers which can be found on our Online Information and Support Section

    The Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two to three working days for replies from our expert team.

    Sending you welcoming hugs B xx

    Community Champion Badge

    Womb cancer forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • Hi Flamingo275, I am so sorry to hear your news. I can imagine how scared you must be to now be facing major surgery. I believe that ACC in the vulva is quite rare, so I am not sure if you will get the answer here, but I have seen that someone has replied to you in the ileostomy-and-colostomy-discussions-forum I don't know if you have seen it? 

    Wishing you all the very best for the surgery x 


    Try to be a rainbow,in somebody else's cloud
    Maya Angelou
  • Hi Chelle I have seen the reply thanks. I think.thats one of the problems for me that it is so rare. The consultants are all having to try and decide what's best to do and radical surgery seems the only option. I've been here before 7yrs ago, and they all had to go and research it! On the positive at least its slow growing and hopefully once its done that'll be it gone. Belinda x 

  • Hope your team have been able to come up

    with a plan for you in the meantime sending you a hug x

    what I’m learning is that this is a rare cancer and then some of the primary’s are even rarer it’s a new minefield xx

  • Hi thanks Acar, I'm having surgery next week which will hopefully be the end of it. Having a rare cancer is a nightmare and I'll be pleased when its over xx