squamous cell carcinoma of nasal septum

Hello, 

I am new to this site and would like any input on my case.  In April my PCP referred me to an ENT dr for a lession that I found in my nose.  I went to the ENT and was told I needed to have it taken out and biopsied and he was almost positive that it was just a wart or mole that was benign as he has only seen 2 in his practice that came back malignant.  I had the surgery to remove it and was told at my post op apt that it was in fact a squamous cell carcinoma lession on my septum and was then referred to a head and neck surgeon.  The reports were sent over and the head and neck surgeon scheduled me for another surgery to remove the scc that was left.  he told me that he would not recommend radiation as he wasn't in favor of radiation.  I had the surgery today and during surgery he sent the section he removed to pathology and then had to go back in bc the report came back that the boarders has precancer cells so he said he also removed that.  I was sent home and was told to return to ER when the area began to bleed quite a bit.  The surgeons partner met me there and sprayed meds to stop the bleeding and replaced it and I was sent home with the pain meds.  Before the surgery there was never any X-rays or Pet scans as the surgeon didn't feel that they were needed as he felt it was localized and caught early.  I pray this is the case but also fear it might not be or it may come back.  Before the surgery I read many testimonies some of which said that theirs was under treated and one person even said it came back very aggressive and they had to go through so much more after that.   I would really like to hear if anyone has any  oppions on my case.  I would also like to add that my surgeon is very highly recommended and has great credentials so I didn't get a second opinion.  

Thank you for any input anyone may have.  

Sarah Sq said:

Hi Jennifer
I've just had
Hi Jennifer
I've just had mri for mass on nasal septum I have constant discomfort in my right hand side of my face and alot of headaches which are getting worse and discomfort in my ears and upper neck. I'm also very tired much of the time after being really fit, what symptoms did you have and how quickly were things diagnosed?
Sarah uk

hope you are doing well. What were your symptoms when diagnosed? I am in Southern California and just beginning the process of getting diagnosed. All the best to you. 

melly said:

Dear Blayne,
I'm not able to be online as often as I might like but I look on the forum whenever I can and am glad to see that you too, are still continuing to post on here.Yes, it would most definitely be helpful to keep communicating!

Have you been able to make contact with anyone else, who has had this exact same cancer, within the same nose/palate location? I'm told that mine began in the septum and had then spread out from there. Would you say that yours is the same story?
Had you been having long term problems,before you found out the cause? How was yours discovered in the end?
It seems to be so rare, that I have only ever briefly found one other person with it myself but we lost contact. So, I've continued to just get on with my treatments, surgeries and recovery 'alone' in that sense really.

Would you mind if I asked your age group? I think I may have asked it in a previous posting. I am only interested to know, as I have been told that I am very young to be experiencing this.

Have you discovered yet if you are to have radiotherapy treatment?When being offered my treatment options, I got the impression that radiotherapy would always have to be part of it.Like there was no question about it really!
So, that no matter what surgery I had opted for, radiotherapy would always have been needed afterwards, to 'mop-up' any possible remaining cancer cells.I started my radiotherapy about 5 weeks after my surgery.
I was quite surprised, to read that you were waiting to hear IF radiotherapy would be involved in your treatment and not WHEN.But not every case is the same, I'm sure, so there could be lots of good reasons, for why that may be so.

Where you mention that UCLA Dental School will be building your new nose, will that be an attachable nose-like outer prosthesis cover only, so to speak or will they be attempting to rebuild/provide any internal structure too? I only ask, as I don't know the exact details and extent of the surgery that you had ,what your individual requirements are and what is offered where you are.

Where you mention that you have been given a retainer, we don't really use that word here in the UK. Have you been given something that looks much like a clear, plastic, gum shield?(A bit like what boxer's use)With metal clips on it perhaps?
If so, has any other substance(?coloured silicone perhaps) been inserted above the retainer too, to help seal off your oral cavity from your nasal cavity?
I had a partial maxillectomy, so it was a portion of my upper palate that was removed, rather than the whole palate. The above style of retainer and sealing substance are what I had put in place, of my missing portion of palate. Is it a portion of palate that you have lost?

Do you know yet what will be done to help restore your palate?
Where you talk of your pain, I can identify greatly! What pain medication have you been provided with?
Whilst it is painful, are you still managing to take food orally though or have they been feeding you through a stomach tube? Fortunately, I never had such a tube and was able to take food orally, pretty much right after I my operation.Sloppy food for quite a while though and probably more to do with stubborn persistence, than any great oral function,on my part!

Well, I am quite tired and haven't been feeling so very well today, so I apologise in advance if my posting is unclear or worded badly in any way.I also hope nothing I have said causes upset to you.
I've covered quite a lot of topics there and probably left you with far too many questions but I would hope that we might be able to share our experiences, even if perhaps it's some time before you might feel able to answer my questions(if at all).
I leave that with you and only hope that you continue to keep me updated and we can continue to be some kind of support to one another, facing such extreme and bizarre circumstances, as we are.

Warm wishes
Melly

would like to see how you are doing and find out what your process was.. I have met 2 other people who have had this situation