Finding support for adenoid cystic carcinoma

Finding support for adenoid cystic carcinoma

This blog is a way of getting to know the Adenoid cystic carcinoma forum. We’re looking at the questions and personal experiences that have been shared on the Online Community. Adenoid cystic carcinoma also known as ACC, is known to be a rarer form of cancer in the salivary gland and can be found in other places of the head and neck too. If you’re looking for information or want to know how you can support other Community members with a rare cancer, stay and read this blog post.

There are hundreds of different cancers, some are more common than others. About 1 in 5 people with cancer in the UK have a form of rare cancer and about 1 in 3 of those rare cancers are very rare types.

A cancer may be referred to as ‘rare’ because it is a subtype of a more common cancer or because it is in an unusual part of the body for that type of cancer. For more information see Macmillan’s information pages for rare cancers.

Finding peer support with a rarer cancer

Finding peer support when living with a rarer cancer can sometimes be challenging as there may not be a lot of people sharing the exact experience as you. Our Adenoid cystic carcinoma forum offers a space for members to talk openly and connect with others who can understand how you may be feeling.  

Having this space to reach out to others with a rarer cancer type may be comforting to know you’re not the only one with questions about practical and medical needs.

“I think that’s 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 it’s slow growing and hopefully once its done that'll be it gone.”
Community member, ‘Trying to stay positive discussion thread’, Adenoid cystic carcinoma forum

“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”
Community member, ‘Trying to stay positive discussion thread’, Adenoid cystic carcinoma forum

“Having a rare cancer is a nightmare and I'll be pleased when it’s over”
Community member, ‘Trying to stay positive discussion thread’, Adenoid cystic carcinoma forum

From reading the conversations in the Adenoid cystic carcinoma forum, it shows how important it can be for people to connect, even if it doesn't exactly match what you are going through. 

“Everyone is different, and every case needs different treatment to the next, so nobody here will be able to say what will be right for you - that will be for you and your consultants to work out. Having said that, there is an awful lot of experience in these forums. Whatever you've got, there's probably someone who has had something similar.”
Community member, Adenoid cystic carcinoma forum

“Hi, I was given the news today that the stenosis in my trachea is ACC but it is inoperable and I'm awaiting a PET scan before treatment is discussed. I'm really trying to be positive although everything I read leaves me feeling that my outlook isn't so great (some say it's slow, others say it's aggressive).  I've great support from husband and family but no one knows what you're feeling like others who have been through something similar and the nurse today directed me to Macmillan.  So here I am.”
Community member, ‘hello, ACC in my Trachea’ discussion thread- Adenoid cystic carcinoma forum

It can be comforting to have a space to talk about how you’re coping with your diagnosis and connect with others who are also living with a rare cancer. Posting in a rarer cancer forum may mean there’s not as many people active every day to offer some support, but keeping your notification setting on, you’ll be notified when someone posts in the group.  

By making sure you’re being notified when members post in a group you have joined, you’ll be able to reply to show your support to each other. See our Help pages for more information about your notification settings.

Things have finally hit home on how rare this is and how limited the treatment options are. am now trying to work out what this means and how I live with it.”
Community member, ‘hello, ’ discussion thread- Adenoid cystic carcinoma forum

“well this is the first time I've not felt like the only person to have this diagnosis”
Community member, ‘hi :)’ discussion thread- Adenoid cystic carcinoma forum

Alongside the Adenoid cystic carcinoma forum, there’s discussions about ACC in the Head and neck cancer forum. The below posts are some of the most recent questions posted here.  

I assumed that we would not establish a plan of evaluation and monitoring of the cancer. I have had a look around the various websites and there doesn’t seem to be any standardised plan one the surgery/RT has been done. Each hospital seems to have their own protocol which ranges from regular scans and checks down to nothing if you don’t ask. Can anyone relate to this? Did you carers offer a next phase protocol?”
Community member ‘What next?’ Discussion thread, Head and neck cancer forum

“In preparation of my next appointment with the medics I would love to receive feedback on what I should be asking regarding the cancer, the treatment and the future. Being a newbie to this club, I have spent many hours reading your posts and i am sure that there is an endless source of knowledge about this cancer. Any advice is more than welcome.”
Community member, ‘re-introduction’ Discussion thread, Head and neck cancer forum

Getting trusted information is really important as generic internet searches can lead to misinformation when looking for rare cancer resources. Your consultant, assigned cancer nurse specialist or someone else from your health care team can help you find the guidance you are looking for.

There’s always the Nurses on the Macmillan Support Line and in the Ask a Nurse section here on the Community that can also provide information and guidance if you’d like to get in touch.

Call the Support line between the hours of 8am to 8pm every day on 0808 808 00 00. There’s also an option to send an email and talk via live webchat during the opening hours.

There’s also other specialist organisations here to help you find the support and information you are looking for such as the Salivary gland cancer UK.

The Mouth Cancer foundation can also provide information to anyone affected by head and neck cancers.

Changing faces offers information and advice to people affected by a change in their appearance. This could be following a cancer diagnosis, treatment and side effects.

Start a discussion in the Adenoid cystic carcinoma forum or the Head and neck cancer forum if you've not yet posted. Introducing yourself can be the first step to connecting with the Community and finding the peer and practical support you're looking for. If you see a post without a reply, why not drop by to offer a friendly hello and make someone feel that they are not alone. 

Anonymous