Pain behind nose , numbness in mouth , pain after swallowing

Hello , I’m sorry to hear of your pain and concern while you wait for a diagnosis of what you might be experiencing. I wanted to welcome you to the online community and see if I can help finding the best place for you to talk that you so wanted. 

I haven’t had any of the symptoms you mentioned and have no knowledge of cancers in the areas that you mention but I do know my way around the site, and I am awaiting an MRI myself to rule out things for my cancer. 

I immediately thought of two places on the site for you to talk to as well as wondering if you might like to phone the Macmillan support 0808 808 0000 to have the professional help of the support line. To talk for peer to peer support you might like to join and start a discussion or do a search of previous discussions in the head and neck cancer group https://community.macmillan.org.uk/cancer_types/head-neck-cancer/discussions and the other place I thought of was the ask an expert section, https://community.macmillan.org.uk/cancer_experiences/ask_the_expert/ask_a_nurse/discussions

When I was awaiting my diagnosis having been sent by my doctor to A&E, I googled and thought I might have a hernia, on being admitted I heard one of the team mention lymphoma and my final decision after a biopsy and scans was metastatic melanoma. I am going through this because I was advised not to google and to just wait for the system to do its thing, and I’m glad I didn’t as I would have googled the wrong cancer. The time up to diagnosis seemed to go so slowly, but really quickened up after that and I could then research and feel I had a little bit of regained control. 

In the cancer groups, you will get peer to peer support for the uncertainty you will feel during the wait, and you can decide if it’s right for you to look ahead for more info on symptoms, diagnosis and treatment for what you are worried you might have. It doesn’t matter that you haven’t had a diagnosis, we love good news stories of people not having cancer as well

good luck during your wait.

Thank you so much for your reply x

You are very welcome , I hope you find some of the links helpful, and that you hear soon about your MRI date. 

Hi Lynz38

I was diagnosed with adenosquamous carcinoma of the sinuses in January 2020. I had symptoms that started in February 2019. I had a nose bleed that came out on nowhere, not long after that one of my nostrils was blocked and I lost my sense of smell too. I then started to experience headaches which were out of the ordinary for me. There was a lot of going back and forth to GP about my nose being blocked and chronic headaches. The tumour was pressing on my eyes as they were hurting too and pressing on my brain.

like you I was treated for sinus infection, antibiotics seemed to help until the course had finished and the headaches came back worse. Then in October 2019 my nose started to change shape again went to GP to be referred to ENT this was on the non urgent list. I went to A&E at my local hospital the same week and was told to go back to my GP. GP put an urgent referral but did not hear from them. My nose continued to swell and changed my facial features. Things came to a head on 31 December when my GP provided me a letter to take to A&E where I had a biopsy taken and a CT scan. At this point they were thinking I had an autoimmune disease so this biopsy came back inconclusive so had to go in for day surgery to have another biopsy taken in January 2020. 

just wanted to give you a bit of information on what I have been through the last year. I hope your MRI scan comes through soon so you can find out what the problem is. I would just keep on their backs in relation to the MRI. I know at the moment things are different due to coronavirus.

Hi , that sounds really tough 

I hope your getting the help and support you need. I feel it's going to be a long few weeks till I get my scan and the cocktail of painkillers they have prescribed just make me feel no with it. 

I think I should also avoid google as I'm making myself worried sick , I'm a single mother to 4 beautiful children and I want to be well for them , I lost my own mother when I was 19 and I dont want my children to experience that. 

Thank you for taking the time to reply 

Hows your treatment going? 

Lyndsey 

Hi,

I had 2 rounds of chemo in February was meant to have a 3rd cycle but that got cancelled due to coronavirus. They bought forward my radiotherapy which finished on 8th May. So I am a month post treatment. Just waiting for my second appointment to come through to see my consultant and should have a scan in a couple of months. 

Definitely avoid Google, I was told by counsellor to not use Google. I panicked as I thought I would lose my nose. I was assured by my consultant I wasn’t going to. You have your hands full with your children. I have 2 both high school age been tough on them when me and my husband told them in February. They seem fine now and at times they do ask questions. 

Good luck when you get that scan and you get good news!

Tanya