Hello, this is my first post, I was diagnosed with cancer in the left side of my neck in August 2023, it is situated in and around the jugular vein and carotid artery which meant that any surgery was out of the question due to the risks of serious complications, I had 6 weeks of aggressive radiotherapy and 5 sessions of chemo, which finished in the middle of November. I am about 14 weeks post treatment and I'm still not eating solids, (forticips every day) this is down to my tongue being constanrtly sore and swollen, and not able to open my mouth fully,I did manage some food, soups , eggs and thought I'd turned the corner but about 3/4 weeks ago any improvement I had in my tongue reverted back to how it had been with an ulcer taking up residence to keep it company, it has been suggested that I may have developed lymphedema, my neck is swollen and tight and trying to get comfortable is a pain, excuse the pun, I have my consultation this week to determine the results of my final scans I have had recently and will hopefully show what the treatment has achieved. My question is, is there anybody that can advise on the condition of lymphedema and how best it may be treated, I've read about massage and exercise, and am dong it but don't seem to be making much progress.
When I get my results all this may become irrelevant because the cause may become apparent with the condition finally being diagnosed, but I thought it worth putting it out there to get the ball rolling in joining the forums.
Thank you
Riley1962
Hi Riley1962 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)…. but I do see that you have already joined our dedicated Head and Neck Cancer 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 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 Riley.
I'm Dani and I hang out in the Head and Neck cancer group Mike has signposted you to.
Lymphodema is common after RT and is treatable but you have to be doing the massage properly and if that's not working there ar other things like rollers and collars. You need to be seen at a proper lymphoedema clinic to be shown how to manage it. All cancer centres will have one though not all have a dedicated head and neck unit. Ask about it at your next appointment. Good luck
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
