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Meet others living with Head & Neck Cancer: Introduce yourself

Posted by Colleen Young, Connect Director @colleenyoung, Nov 13, 2017

Welcome to the Head and Neck Cancer group.
This is a welcoming, safe place where you can meet other people who are living with head and neck cancer. Let’s learn from each other and share experiences from diagnosis through treatment and coping with symptoms and recovery challenges.

As you know, head and neck cancer is the general term for a broad group of cancers that begin in the head and neck region. This include oropharyngeal cancer, hypopharyngeal cancer, laryngeal cancer, lip and oral cavity cancer, nasopharyngeal cancer, paranasal sinus and nasal cavity cancer, salivary gland cancer, squamous cell neck cancer or ameloblastoma.

Let’s get to know one another. Why not start by introducing yourself? What type of cancer have you been diagnosed with?

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | 2 days ago
In reply to @alexandra24 "Hello all, I have been diagnosed with adenoid cystic carcinoma of the minor salivary gland. It..." + (show)
@alexandra24

Hello all, I have been diagnosed with adenoid cystic carcinoma of the minor salivary gland. It was diagnosed by biopsy back in February and I am waiting for treatment now. It’s in my sinus region and they don’t think they will be able to get clear margins as is too close to the skull base. Has anyone else been in this situation of not being able to get clear margins in surgery and if so did you end up having the surgery or just radiotherapy? We have had 50:50 responses on whether it’s worth removing as much as possible/debulk before radiotherapy or just do radiotherapy alone (although previously told alone wouldn’t do much). Just wondering what experiences people had and whether thoughts vary around the world? Thank you, nice to be a part of this group

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@alexandra24, have you decided on your treatment path? What has your cancer team suggested? Did you get a second opinion?

REPLY
alexandra24 | @alexandra24 | 16 hours ago

Hello @colleenyoung. No treatment plan set yet. It looks like probably radiotherapy. I am looking into carbon ion therapy at Heidelberg in Germany or the hadrontherapy in Pavia. I’m wondering if anyone has any experience of these. I spoke to the oncologist yesterday in our hospital and he had zero interest in discussing it but did say be careful of carbon ion therapy as he knew someone who was disfigured from side effects of it. Does anyone have any further info on this?
Regarding second opinions, it seems impossible to get hold of scans to forward on to anyone. I have been a week on the phone for hours and hours trying to get them so I can forward on to hospitals but so far no luck

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