Hi everyone,
I’ve recently been diagnosed with Acinic Cell Cancer and looking to connect with others for support. I have a rare form of cancer and would really like to hear from others who have been diagnosed with the same.
I’ve looked through the groups but unable to find one which covers this form of cancer, so would appreciate any guidance the community team can give me in terms of pointing me in the right direction please.
I’m 34 years old and living in London. I’ve recently got married and was about to start trying for a baby before I was given the terrible news. I’m apparently stage 1, however I have a follow up CT scan this Thursday to determine whether the cancer has spread - I’m praying every day that it hasn’t.
I think I’ve been living with the disease for some time, after going between multiple dentists who thought it was an abscess. I had a root canal, which led to the tooth coming out, before I was referred to the NHS. Covid then hit and everything was delayed before I was put in for an op to remove what they thought was a cyst or benign tumour. The tissue was sent off for biopsy and sadly came back as cancer.
My friends and family have been a tremendous support, but I would really like to connect with others who are going through the same thing for support.
Looking forward to hearing from someone.
Thanks so much, S x
Hi and a very warm welcome to the online community
Having been diagnosed with cancer 5 years ago I know how helpful this community is in being able to 'talk' to others who will understand what you're going through. Having a rare cancer makes it a little trickier but I have had a look through the community and found that the head and neck cancer group has people who have posted about acinic cell cancer before.
To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi and welcome to the Online Community but so sorry to hear about your diagnosis.
A cancer diagnosis can be very challenging and more so when it’s rare, I know that feeling as I was diagnosed back in 1999 with a rare blood cancer so no specific group for me but the general blood cancer type group.
I see that Acinic Cell Cancer is a form of salivary gland cancer and I also see you have joined our supportive Head and neck cancer group, this would be a good place to start so why not introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
You can also put Acinic Cell Cancer I to the search tool 
near the top and look at the posts ‘anywhere’ on the site then hit reply to see if folks are still looking in on the community.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
All the very best ((hugs))
