Hi everybody,
Six weeks ago my mom (healthy, early 60s) was diagnosed with high grade transformation acinic cell carcinoma, a rare and aggressive variant of acinic cell carcinoma. There are only 50 known cases in the world, and very little literature and knowledge to guide her treatment. As such I am posting to every message board I can find to try to locate any other individuals in the world who currently have high grade transformation acinic cell carcinoma, in the hopes of learning from their treatment plans. My mom is fortunately receiving great care from surgeons and radiologists and oncologists in Pittsburgh PA, but like I said, it's so rare that what we need is anecdotes of what's being tried right now. I would so appreciate any amplification you can give to this message. Thinking of you all and wishing you a billion good things.
Signed,
Caroline — a daughter who loves her hilarious, powerful mom so, so much
Hi CarolineMS and a very warm welcome to the Macmillan Community but sorry to hear about your mom’s diagnosis.
A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges will help a lot (I have a totally different type of cancer)
I put acinic cell carcinoma into the search tool 
near the top and selected ‘Anywhere’ and found a number of posts but did not notice high grade transformation mentioned but do have a look.
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 Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your mom you may benefit from joining and posting in our Family and Friends and Carers only support groups where you will connect with others navigating the exact same support challenges….. although do remember that the Macmillan Community is mainly UK based.
To connect with a group click on the “Bold Italic Links” I have created above 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)
You can then put up your own post when you’re ready 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 can also scroll through other members posts and click “Reply” to get involved.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
We also have our Ask an Expert section but do allow a few working days for a reply.
Do get back to me if you need further help navigating the community.
