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Stage 4 SCC of the nasal septum

20 Sep 2019 19:50

hi there. I was diagnosed with stage 4 SCC of the nasal septum in July of last year and was operated on in August 2018.  The surgeons cut my head from ear to ear, peeled back my face and removed the tumor from the whole of the inside of my nose, and in the skull base which they hadn’t spotted prior to surgery.  They rebuilt a new nose using bone, skin and the vein from my left forearm from the inside, all attached to a small titanium support screwed to the bottom of mt skull.  I then had 30 sessions of radiotherapy to this area.  The problem is, that 12 months on, the surgeons have realized that my body has “dissolved” the bone supporting my newly rebuilt nose and there is now nothing left.  My face is sinking inwards, more severe now than “saddle nose” and the titanium clip is about to come through the skin (between my eyebrows).  The surgeon has told me he wants to operate again urgently to stop this happening but has given me 3 options.  1.  Go through the exact same surgery as before but using my right arm this time as a donor site, hoping that this time it works and my body doesn’t reject again, 2. Use a piece of rib and skin from my forehead or groin again, hoping my body doesn’t reject,or 3. Remove my nose completely and prepare the site for magnetic prosthesis.  I have very limited time to decide and I just don’t know what to think.  I don’t know how long it is after surgery my face will be ready for a new nose to be fitted, what happens in the meantime..will I have to go out with a hole in the middle of my face and if so, how long for? Can a person with a prosthetic nose do everything normally... swim, go out in the sun, go through airport security without having to remove the nose.  I need help please.

Lisa

Stage 4 SCC of the nasal septum

23 Sep 2019 13:26 in response to lisaJR

Hi Lisa and thanks for posting

I am so sorry to hear of your situation - you've had so much happen for you already in the last year and it sounds like you now have to make some very difficult decisions.

I imagine that you are at a specialist head and neck unit, so I hope that you are getting support from the team that you have, especially the specialist nurse who should be able to go through many of these things with you. 

As I suspect you already know, no one here will be able to advise you as to what option you should take. There are so many different variables involved and will include things like whether you are adamant about retaining your own reconstructed nose, whether you are very opposed to a prosthesis and really just what option your own surgeons may be leaning towards .

The length of time you may need to wait for a prosthesis can depend on things like how quickly you heal, and possibly on how quickly your own unit will be able to help you with making the prosthesis - this may differ from around the country so do make sure you know this. While waiting for your prosthesis, you would though normally be fitted with a temporary one , so you would have some protection.

You may also want to read the link about your rights going through an airport here . 

If there is time, it may be possible for you to speak to someone who has a prosthesis. Although it will be their experience and not necessarily yours ,it may be really helpful. Perhaps your team can put you in touch with someone who has been through your unit, or perhaps someone at the following organisations at our website here, can help. 

As we talk about many different cancers, and as many of your questions require very specialised information, it may be more helpful to ring the organisations listed above on their helplines, as that is their speciality.

I really hope you are able to make a decision that you feel at least reasonably comfortable with and that you are able to access the support you need surrounding these decisions.

All the very best of luck and all our best wishes

Wanda