Newly diagnosed and terrified

Hi Sarah, sorry to see you here but you are in a good place for advice and support.

I had six weeks RT for base of tongue cancer nearly four years ago and I am fit and well. The only side effect I have is a slightly dry mouth which is manageable. I was 68 when my treatment finished. It's a tough treatment, there's no doubt about that but all the side effects can be mitigated. I'm afraid you will be pretty poorly but try not to worry about your family. This is your time and you must concentrate on yourself, but having said that children are pretty resilient as long as you are honest with them. A little upfront information is essential, I think.

The treatment itself is not painful but the effects start kicking in at round the end of two weeks. Most people find it difficult if not impossible to eat by the 4th week and you get very tired both from the treatment and from the analgesia you need.

Into week 4 I had to have a nasogastric tube as I couldn't swallow anything. It didn't look nice but it saved my life and kept me strong. I would say that if you are offered a feeding tube, take it.

I personally had no choice in the type of tube but in retrospect I was glad it was an NG tube, but that is a personal opinion.People report here that PEGs can take some time to settle and can c cause a bit of pain initially. They are also in for longer as you are at the mercy of your dieticians as to when they are removed. I took my own NG tube out after 8 weeks in the bathroom

It's easy to offer you information overload at present so stick around and ask any question any time. There will always be somebody around to lend a hand

Hi Sarah welcome from me as well sorry you’ve found yourself on here. Best advise keep off dr google there’s so much info you’ll scare yourself unless you know where to look stick with us. 
I had HPV tonsil cancer with several affected lymph nodes 61 when diagnosed 4 years ago now happily living my life x

i had n g tube fitted end of week 3 was my life saver. 
taje everything one day at a time 

blog below might help 

Ask any questions 

Hazelx

Good evening MrsSC74, sorry to hear about cancer, i was also 48 when i had my first operation followed up with chemo and radio i will be 62 in December. All i can say is that the side effects will differ from person to person and sometimes a feeding tube is needed because swallowing can become difficult, i had a PEG from day one because of where my surgery was ( floor of the mouth) but as Dani and Hazel mentioned they had feeding tube via their nose (NG) which does not involve any surgery as the PEG goes directly into the stomach area. Im sure your husband and children will give you all the encouragement you need.  You will of course have good and bad days but dealing with them a day at a time is often the best way so please do not worry if you have an off day as im sure your husband and children will be there to help and support you. Wishing you all the best for your treatment, take care .

                                                                                                           Chris x

Hello Sarah, sorry to hear about the diagnosis and understand the feelings of shock and immediate concern for your family’s feelings and reactions. I think you’ll be surprised at how teenagers cope once they’re given the facts and can feel they can be of support to you. . . 

It’s a very treatable cancer with a good rate of success which is a positive thought to cling on to- don’t feel terrified because you will get through the treatment and the side effects. You will have plenty of support from all the medical staff all along the way.

I had a PEG fitted before I started treatment and it has really been such a reassurance ( and necessity) to know that I can get the nutrition I needed when I could no longer swallow. It was rather sore to start with, but that improved when the stitches had dissolved and then you don’t feel it at all really. The actual insertion procedure didn’t hurt at all.

Anyway, don’t forget to ask as many questions as you want, I used to write my questions down whenever I thought of one there were very many!
 Best wishes and thoughts,

Laura.

Hi Sarah

So sorry to hear this, but many of us on the site had a diagnosis of HPV cancer years ago.and are alive and kicking, the treatment is rough, but the cancer is very treatable

As for the feeding tube, i.didnt need one myself although I lost.a.fair bit of weight. I would say do whatever is needed to get the nutrition down, and do not be afraid to ask for more pain relief.

Good luck and please ask any questions you have

Hi Sarah my name is Karen. I too have recently been diagnosed with nasopharyngeal cancer. I am due to start my treatment tomorrow and I am also scared of the side effects. Having been very fit and healthy the thought of being incapacitated really upsets me. I know I will get through it but it is still really challenging. I will be an inpatient for the next 6 weeks Mon-Fri and away from home in an old dormitory style hospital ward this too is upsetting as I am very quiet and know I will miss my privacy. I feel a terrible person for even voicing what seem such minor complaints when people all around are working tirelessly to save my life. I have had a PEG fitted this week and personally wish I hadn't. I found the procedure very invasive and painful. I am not suffering from malnutrition and wish I had said IF I need additional support with eating down the line then I would have opted for the nasal feeding tube. I know others have had the PEG and found it ok...which makes me worry I have a low pain threshold...and then makes me worry about the side effects of treatment! This is life at the moment though. Sorry I have not got much positivity to share with you other than to say I empathise and am sending you much love for your journey x

Hi Karen 

we will all be rooting for you for tomorrow 

Can I ask why you are an inpatient for the duration? That sounds awful. 
I and many others visited our hospitals daily 

Hi Dani because we are over an hour away from the hospital they ask that we stay as an inpatient Mon - Fri. I really pushed them as I don't want to, but in the end had to accept their advice which was the treatment would mean the daily journey was really physically and emotionally demanding. Thanks for your good wishes.

At least you get to go home at weekends. I was 2 hours away on a bad day but usually an hour and a half and still made the trip. My husband drove every day and some days when I had bloods and consults we were gone all day. I couldn’t have managed without the security and privacy of home. Maybe you can start another thread on your hospital stay and we can all pile in with encouragement every day. Only if you want to of course. Hugs. 

Hi Karen will be thinking if you tomorrow I was over an hour away but I did the journey daily with hubby driving  sorry you can’t do the same. Rant in here at us we don’t mind we will try and an answer you the best we can. Don’t think about pain threshold some  hospital insist in people having pegs  some don’t. No right or wrong way. Where are you being treated if you don’t mind telling us. 
Just concentrate on the end game. Treatment isn’t easy but if u can do it anyone can. 
hugs from me. So remember take a long charging vocable with you. Download some  good box sets if you can. 
Hugs Hazel