Hello there,
I've recently been diagnosed with Adrenal Cortical Carcinoma and have exhausted myself looking at the terrifying information on every and any site I can find.
I realise that everyone is different and everyone has a different diagnosis with its own prognosis, however, all I seem to find is cold hard numbers and percentages.
Has anyone/loved one's been diagnosed with ACC, or know anything about successful treatments?
Is anyone aware of any sites/forums where ACC diagnosed people communicate? I have looked on here, but there is no specific group for ACC, perhaps due to how uncommon it is.
Thanks and kindest regards
Hi WD48 and a very warm welcome to the Community but sorry to hear about your diagnoses.
Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).
The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Adenoid carcinoma support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group click on this link 
…… then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow 3 working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.
Do get back to me if you need further help navigating the community.
Hi again WD48 ..... there is a challenge when it comes to some of the rare types.
I have an 7 in a million rare incurable type of Lymphoma........ with over 60 types of Lymphoma it would impossible to have a group for every type of Lymphoma as it could end up with only one member..... it's unfortunately the same for other rare types of cancer.
I did a site search using the words Adrenal Cortical Carcinoma and THIS LINK will take you to the hits...... have a look.
You could put up a post in the Kidney cancer support group just to see if someone with the same has joined the group but has not posted. you could be the same in the Adenoid carcinoma group.
Many people join the community to 'search' but often don't post.
