We know that receiving a cancer diagnosis can be scary, especially when you don’t know what to expect.
Members in the Community have been there. They can help you to face those worries. Through shared experiences, they can help you face the unknown and make you feel much less alone.
In this Community New Blog, we’re highlighting the head and neck cancer group and some of the issues members face through treatment and beyond. We’ll be focusing on eating problems, maintaining weight through treatment and staying as healthy as you can.
Many members come to the Community looking for support with eating the right foods through treatment and dealing with side effects.
"End of week 3 and taste buds have gone. Does anyone have any ideas of what foods they can still taste?" - Carran, head & neck cancer forum
“I have just completed my 2nd week of radiotherapy and it is going ok but my tongue feels sore on the right side. Clearly it is the treatment impacting but is there anything else I can do? It makes eating difficult and on that point since my tonsillectomy I have no taste. In fact it has become really difficult to continue eating a normal menu. So for any of you that as gone through it how did you manage any little tips?" – AG14, head & neck cancer forum
Members were keen to suggest getting some help from their medical team for any soreness or discomfort, first and foremost.
"Your team will all be aware of the progression of symptoms so should supply you with stuff to keep you comfortable so don’t play down your discomfort." - Beesuit, head & neck cancer forum
Once any pain and soreness is managed, you might still have difficulties with swallowing or tasting food. Across the forum, lots of members mention the need to treat 'food as fuel' and find different ways to keep the calories going in.
"You just have to take each day at a time and get enough food and water into yourself to keep your weight up that is your number one priority." - Minmax, head & neck cancer forum
Some head and neck cancer treatments may result in a particularly sore mouth or throat, or you may develop more severe swallowing difficulties. Your doctor may suggest you need to be fed through a tube for a while, to ensure you have enough calories to maintain or gain weight.
There are different ways you can be fed by a tube – nasogastric (NG), percutaneous endoscopic gastrostomy (PEG) or radiologically inserted gastrostomy (RIG) tube. You can read more about nutritional support on Macmillan’s cancer information pages here.
We know that for some people, the thought of needing a feeding tube can be really distressing. The Community is a great place to find people who have used a feeding tube through their own treatment and can help by sharing their experience. It can be reassuring to know what to expect and that you're truly not alone.
"As I'm having RT to both tonsil sites they want me to have a feeding tube, which I'm dead against, in fact I hate the very thought of it." - Mark777, head & neck cancer forum
Ronnie95 shared their own experience of having a PEG feeding tube.
"I was completely freaked out at the suggestion of a PEG initially, but am so grateful I had one" - Ronnie95, head & neck cancer forum
Several members suggest that it's better to have a tube fitted when offered, rather than leave it until you really can't manage to eat.
"...having a tube in place as "insurance" before treatment starts is a much easier procedure than having one put in during treatment if/when it becomes neccessary." - MikeO, head & neck cancer forum
"I had a RIG fitted before my treatment started, after 3 weeks into the treatment I was 100% reliant on it, and I used it for about 10 weeks in all. My advice to anyone who is offered one is to have it. By having it, if you can't eat it is one less thing to worry about. The way I look at it is, its better to have even if you don't need it, than need it and not have it." - old biker, head & neck forum
If you're looking for more information from Macmillan around eating problems and cancer, you can find this here.
You can read more about nutritional support on Macmillan’s cancer information pages here.
Macmillan also have some general information to help you cope through treatment. In addition to eating problems, cancer treatment can affect things like your emotional well-being and your relationships. We have information about the help and support available and advice to help you cope available here.
If you need help with talking to your healthcare team, there are some guides on the main Macmillan website here.
The Mouth Cancer Foundation also gives information and support to people affected by head and neck cancers.
I hope this blog has been useful for anyone currently going through head and neck cancer treatment. If you have any questions for members of the head and neck cancer group, I'd encourage you to join the group and post your question so that members can offer you some support.
Please don't hesitate to get in touch with myself and the Community team if you need any help finding your way around, or using the Community. You can contact us by email at email@example.com
You'd also be welcome to comment below if you've found this helpful, or want to offer any thoughts or feedback.
I will apolagise up front i am brand new to being on line and trying to navigate around i am not having treatment yet but i seen head and neck cancer and thought i would just be reading information about it.I read your Q&As and i was comp;letly blown away by the strength and courage that each of you's show to each other yours are the first experiances i ever seen and i am truely in awe. i have non hodgkins lymphoma in the post nasal space and in the throat on the swallowing part my tonsils the lymph tissues are affected i have had multiple dental extractions and mass bone loss in my gums mainly in the top left side right were the post nasal space lymphoma is im under the care of the the specialist care unit of the dental hospital. I have had 2 neck massed (large lymph nodes) cut off on the right and left side of the neck. I have multiple other health issues as its a blood cancervery sever iron deficancy aenemia sero negative rheumatiod arthritis(which has severlely deformed my hands wrists and elbows,my gums are very sore and its left me with very few teeth which are infected so i have difficulty eating. In genral i was feeling very sorry for myself but then reading your messages has really kicked me up the backside reading what yous are going through and the strength yous have i think you are real true HEROS i feel like a fool for even clicking on the wrong group as i am not having my chemotherapy [R-CHOP 21] treatment yet i cannot have radoitherapy as my cancer was to large for the radiation feild. but when all is said and done i am struggling with symptoms which is knowhere near what yous are going through which humbleing to read my god bless each of yous and aid yous in your fight thank you
Thank you so much for taking the time to comment here on the Community News Blog. May I wish you another warm welcome to the Community, although I am sorry that your diagnosis has brought you here to the site.
I hope we can help you find the right support for you - it looks like you've joined the Follicular Lymphoma forum but if you need more help finding groups, please do let us know. You can contact us by email at firstname.lastname@example.org or keep in touch by PM to Moderator - Macmillan Community. Once you've started your PM conversation, you can continue it by clicking on our last message and typing in the box below.
As your cancer is affecting your head and neck, you would also be welcome to join the head and neck cancer forum too, as you may find members who are going through similar experiences, even if the treatments are slightly different.
If you're also looking for cancer information from Macmillan, you'll find this on the main Macmillan website here. You can find information specific to you through your dashboard, when you're logged in.
Please do let us know if you have any questions, or need further help using the site. I hope the Community helps to show you that you are not alone and there is lots of support available for you.
Hi everyone, today I find out the biopsy results and which stage I am at, I’m still in the ‘not sure what’s about to happen camp’ all I do know is that a tumour has been located at the base of my tongue, later today I find out what process and treatment plan I will need to go through, thus far since MRI, CT and biopsies taken it’s been kind of surreal, the worst kind of waiting ever, now, today it’s starting to sink in, so any help/ advice will be gratefully received, I thank you in advance.