Nasal Squamous cell cancer

Hi Terracatb, Welcome to our little community

So sorry to find you here and that you have had this but I hope there are enough people here to help you out as indeed it is a rare cancer.

THIS   is the latest thread. There may be people you can connect with by sending them a private message and one or two might still be active here. Just hover over their forum names below and a friendship request comes up. Click there and if the accept your request you can private message.

Good luck

I'll tag them so that they might see your post, WakeyLass terrypops  I hope they don't mind.

Hi Terracab

Reading your post is deffinately dejavu for me. I had exactly the same last year and like you it took two operations to fully get it out and I also lost some of my top lip. I then had to have 4 weeks of radio therapy which finished around the end of June last year. Unfortunately I then found a lump in my next and it had spread to my lymph nodes. I then had a full neck section where both nodes were removed. This was then followed by six weeks of radio and chemo but like you have now been given the all clear last month.

The only long term side effect for me has been a continual blocked nose have you found the same? I now have my prosthetic and it is very good people can only notice it when they are very close to me.

if you need any further help or just want to have a rant let me know.

Regards

Terrypops

Hi Terracatb, sorry you have had to join us here but having said that we are all here for support whatever type of cancer brought you here!!

I had a total Rhinoectomy in March 2020 and fortunately they had removed it and had clear margins all around.   I had radiotherapy to make sure all the cells were removed and finished that in June 2020.   Have just had my third 3 month check and everything is ok so far.  I have a prosthetic nose, they don’t look too bad but I find it a bit uncomfortable.  I am just waiting for the Dentists  to finish off now as I had some teeth removed at my request,

  You are correct, this is a very rare form of cancer and it is nearly impossible to find fellow sufferers.  I would have preferred it not to be in the middle of my face, but we have no choice where it appears. We just have to get on with it.   Good luck for your face to face meeting and let us know how it goes.

Thank you

Happy to meet someone else who's had it done. I still get soreness at the top where they cut the bone and totally opposite to you a runny nose. I am constantly cleaning it out using cotton wool buds. There are 6 cavitys. 2 at top, 2 at sides and two small ones at bottom. I use a paper towel rolled into a point to clean the smaller ones.

Luckily I didn't have to have treatment after the ops and it hadn't spread. Did you have the magnetic implants and was it painful. I don't fancy that. Glad to hear you have had the all clear.

Glad to find someone else who has had it done. Luckily I didn't have to have treatment after op. Glad to hear you are progressing well.

Have you had the magnetic implants for your prosthetic and was it painful. I don't really fancy that.

I'm not too bothered about appearance as I wear a mask. Luckily I still have some bridge left so can still wear my glasses. It took a while for people to get used to it but most are fine now. I just act normal. Get some funny looks off strangers but nobody has said anything.

I still have days with a lot of tiredness and sleeping a lot during day then awake most of the night, but I can cope with this.

Good luck with your dental treatment. 

I have not had the implants done yet I still have to glue my nose on. They won't do the implants yet as the radio therapy damaged my gums and I had to have what remaining teeth taken out and until I have a set of dentures they won't do it as having teeth again will change the shape of my face. However because of covid all restorative dental work is on hold I still don't know when this will happen. Oh to be able to bite into a nice juicy steak!!!!!

it seems strange that all three of us had it done about the same time time last year must have been something in the water!

regards

terrypops

Hi I thought I was alone in the nasal cancer battle at the beginning with it being so rare. I haven’t got the implants as yet, I’m still using the glue.  I usually put a dressing on for hospital appointments as it’s easier for me to uncover it.  I don’t have a lot of bridge left so wearing my specs is a bit uncomfortable I’m managing.  I suffer terribly with tiredness and my breathing is a bit of a problem sometimes. I’m awake 2/3 times most nights, but come morning I can sleep for ever. 

Hi terrypops they told me the dentures would change my face shape too.  I’m so desperate for teeth.  My dentures celebration will be fish and chips and a packet of kp salted peanuts.  I think we have been lucky getting all of our treatment done whilst everyone was fighting the pandemic.  Some folks have not been so lucky with their treatment unfortunately.  But it is what it is and we have just got to get on with it, if it bothers some people it’s their problem 

I don’t mind the tag I’m amazed there are more of us.  It does help when someone knows exactly what you are going through, I’m sure you agree.  It’s my first birthday today from when I had the Rhinoectomy so onwards we go.  Hope you are keeping well Dani