Nasopharyngeal cancer.

Hi Lindy1818 

Im sure somebody will pop in soon but meanwhile have a look through the search I made. Sometimes people put details in their profile so it’s worth looking there once you find a post that’s relevant. 

https://community.macmillan.org.uk/search?q=Nasopharyngeal#serpq=Nasopharyngeal&serp=1&serptag='head%20and%20neck%20cancer'

Has your husband been offered Proton? 

Hi Lindy

I dip in and out the forum and usually anything I see someone has already posted with a response better then I could have. I do have experience with Nasopharyngeal cancer. I had a lump on my neck with no other symptoms and 3weeks later I'm walking out of of hospital with the dreaded green folder (this might be a Bath RUH thing). Please ask anything on here and I'll be able to give you my personal experience. I will say that treatment was tough and I hit the lowest point of my life but there is hope and over a year on I'm feeling good and I'm back working although wish I was retired but at 44 that's not feasible sadly. 

If your husband is having chemo radiotherapy it starts to get really draining a couple of weeks into the radiotherpy, he'll be tired and feel pretty rubbish and then all the other side effects will start such as taste loss, mucus and saliva diminishing. 

I would recommend having a chat about the Chemo drug i'm assuming it will be Cisplatin, this stuff can cause tinnitus after a few sessions so always keep the consultant informed. If you have the option to have a PEG / RIG take it its seems brutal that you'd need it but i was so grateful of it near the end of treatment. I had no choice i was told i was having it.

The main thing that kept me going was my wife  and kids just knowing they were there, carried on as normal when we had too and let me rest when i needed it. 

Ask anything and i'll keep an eye on the forum and give you my experiences.

Wishing you all the best

Alex

Hi

I’m new here. Just confirmed to have nasopharyngeal cancer earlier this week but still need further investigation to know the staging. Had recurring chest infections last year and coughing up blood since mid Nov. GP wasn’t helpful. Started with private respiratory consultations and had chest Xray, CT scans and found no cancer before Christmas. Did my own research and asked GP to refer to ENT to rule out nasopharyngeal cancer. Again, through private care as GP said not enough symptoms to refer me to cancer pathway. Found the lesion in post nasal area while doing the nasoendoscopy at the first appointment. Then MRI and biopsy. MRI confirmed it’s T1. Ultrasound for the lymph node normal.

Have been reading about radiotherapy and it does sound a bit scary….

VVN2046

Hi VVN

I had chemoradiotherapy in June 2023 for tonsil cancer....it is a very challenging treatment ..diagnosed at 68 I managed to get through the treatment....had a few problems....but no gain without pain....side effects do not hit everyone hard some tolerate the treatment better than others....try to stay off Google...unless for NHS/Macmillan/Cancer Research ETC......Keep the forum updated with your progress.

Peter

Thanks Peter E - I am reading quite a lot of the experiences so far and they all sound pretty challenging. I am 45 and I have sent my bf away for a trip for himself before things get really tough…

Trip is a very good idea ....the treatment can also be challenging for partners and carers....

Take care

Thank you so much for this Alex. My husband starts his radiotherapy a week tomorrow. He had a very bad reaction to the chemo so they stopped that (low platelets, low potassium). I'm so happy that you are well supported and back at work.

Lindy

Hi VVN - my husband has the same cancer as you (diagnosed just before Christmas). In his case the lymph nodes in the neck are affected. He has been told the treatment will cure the cancer. That gives me hope and I hope it's the same for you. All the very best. 

Lindy

Hi, just wanted to touch base and say we're on a similar trajectory. Partner of 19 years (aged 65) has hypopharyngeal cancer (3 sides of throat and adjacent nodes) and a separate/different lung cancer but all receiving radiotherapy concurrently starting next week  It is as scary as hell but there is a phenomenal level of expertise, treatment, support and hope out there. Glad you've reached out x