squamous cell carcinoma of nasal septum

Hi Melly,
My name is Teresa and I am 46. I live south of Atlanta Georgia USA. I think I have the same type of cancer as you. I have cancer of the nasophlaranyx. Which is the area behind the nose.It was squamas cell.I was told it was rare & the time its noticed it has usually spread. When they found mine it had spread to all the sinus paths on the right side of my face. Then into the lymph nodes in my neck,my gums even started growing into my ear. That was last July. They couldn't do surgery because it was too advanced. I had chemo and radiation done at the same time. Before they could start I had to have 5 teeth pulled because of the cancer. I had a stomach tube put in because you wont be able to eat. I haven't eaten anything by mouth since last Aug. I wont kid you the treatment I had was very tough. I had radiation 5 days a week for three months and had the same amount of strong chemo for the same length of time. I was so sick during this time that a lot of time I couldn't go anywhere. When I moved around I would throw up. I lost 40 pounds. But after treatment stopped they did a ct scan and my cancer was gone. I will have another scan next month to see if it has come back or spread anywhere else. I think everything is okay though. Its been the toughest thing I have ever had to do. I would get another opinion. And weigh the odds. I haven't had many side effects from my treatment. A little hearing and vision loss because of nerves that were effected. A dry mouth because my salivary gland was destroyed. I just carry water around with me. I know it is scarry and I wish you good luck. I was told my chances of survival werent that good. But all that has changed! So keep your hope and beleive in the power of prayer.
Teresa

Melly,
My husband has just been told he has squamous cell carcinoma of the nasal septum. I am looking for someone just like you to see how you are doing and what treatment you have been taking. they are talking about removing my husbands nose and are doing a MRI to see how bad the cancer really is. It appears that it is rare and no one seems to have answers at this time. I hope you can help us. my husband is very scared and looking for someone like you to tlak to. please write back. sincerely, alice marleaux

melly said:

Dear amarleaux2,
Let me please initially say, how very sorry I am and how much I can sympathise,with your husbands reaction to this recent news.It wasn't clear to me but could you please let me know, which part of the world are you writing from?
melly

In reply to Melly, my name is Blayne and I am Alice's Husband with SCC of the nasal septum. We are in Southern California and at this time I have surgery scheduled July 29th for a rhinectomy. Did you have the same surgery? It looks like we share the same type of rare cancer!

melly said:

Dear Blayne,I guess by now you will have had your surgery and may or may not still be in hospital. This was why I had asked what country you were writing from, as I am in the UK,where you tend to be discharged from hospital and considered able to go home,within days of your surgery!But I have read elsewhere,of Americans having similar surgery and remaining in hospital for weeks. I didn't have the exact same surgery,though,that you had said you were due to have.

It seems to make a difference where you are, as to what treatment you have, how long things take, etc. I think age can also be a factor. Do you mind if I ask how old you are? I was told that I was very young to be experiencing this.

As I'm unsure of what you have been through and where you are up to in your treatment,I wont bombard you with all my experiences,at this stage.I will say though,that I have had to adapt to some strange and at times,scary circumstances, which I wouldn't wish on anyone but I've done it!I've got through it.It's amazing how you just adapt.

I can look back on things I've been through with this cancer and am amazed at where I am now.You just cope with things, that you never thought you could.I am not a special superhuman person or alone in this.There are so many stories here on this forum and elsewhere on the net,that relate to different cancers but tell similar personal and emotional experiences.You will make it through this!I have been living with this since last November.Things do improve.

I wish you well and hope to hear of how you are doing.You don't say if you have experienced similar damage to me,whether your palate or any other areas are affected.I would be interested to know more about that.Also, will you be having any Radiotherapy?You may not feel able to talk right now or for some weeks/months yet but whenever it may be,please update me on how you are.I look forward to reading that update.
Warm wishes
Melly

Dear Melly, Yes I have had the rhinectomy surgery. It was on July 29. We have had some computer problems and was not able to re-register on the site. Anyways we are in Southern Calif. and had the surgery done at a Kaiser Hospital in L.A that sees over 5,000 cancer patients per year. I was in the Hospital 6 days and spent 2 full days in Intensive Care. To say this was a devastating experience is an understatement. I had the nose removed and my hard pallete removed too. The doctor did not prepare me for the hard pallete removal as it has rendered me unable to speak without a retainer. I have had some rough times adapting in the first few weeks. I am now on week 3 and still am adjusting to having a retainer in my mouth to speak and eat! I have lost 17 lbs. and still cannot gain it back because I have such pain in my teeth and mouth. However I have had some good days, and I am awaiting the news from my oncologist whether I have to have radiation or not. You are right. Some how you adapt. I have had some days when I thought "I never bargained for this" but I just need to jet thru the painful days and wait for the time when the Doctors at UCLA Dental School can begin the process of building my new nose! Hopefully we can keep communicating on this site as it is very helpful for me to contact people with this insidious disease.

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

Hi Melly,

It am thrilled to see your reply to my message. I think we have the same type of cancer. My nasal septum tumor grew from within the septum according to my surgeon.

My surgery was a total rhinectomy and full maxillectomy. The surgery was just in time as the tumor was heading towards my throat and towards my left eye.

My only symptoms were bloody noses that would occur off and on for two years. I was told I had a "deviated Septum" and that surgery to correct it should be a last resort. The doctor would cauterize my left nasal wall and would ask? Did you stick something up your nose? I would reply with anger "NO"..

I had a CT scan May 2002 and it showed no tumor, "Nothing" according to my ENT doctor so I felt I could live with the "deviated septum" unless it got worse.

The bloody noses would stop and come back off and on, and continued until May 2004 when the ENT Doctor said he saw a "growth" in my upper nasal wall. Needless to say it came back showing cancer. I was devastated and thought for sure this would be a "small bump in the road" I had a biopsy surgery and "I knew for Sure" this was no big deal. I was shocked and dismayed when I was told I had stage 3 and would have to have me nose removed by two seperate tumor boards at major hospitals in Southern Calif.

I am a 45 year old male who had experienced excellent health up until now. I have recovered nicely so far with some very bizarre and strange experiences..yes, I would say my whole upper palate has been removed..I cannot speak or eat without what UCLA Dental calls my "Orbutrator" or what we in the States call a "retainer" This has been the toughest part for me..Lots of pain and soreness adapting to the "retainer"..it is made out of an acrylic substance..

I was taking "vicodin" for pain but have stopped taking it because I know it can damage your Liver and makes me very tired.

My prosthetic Doctor said since they have taken such a large portion of my palate that they might go straight to the "retainer" to connect my new prosthetic nose..however, to keep the nose attached I will have to use an "adhesive glue" and I do not want that.. I want the procedure where the "Titanium Bars" are used to snap the prosthetic in place with no adhesive.

I have been told by my radioligist that since my surgeon did such an excellent job and that the "margins" were good, I should not use radiotherapy unless some type of recurrence should appear. I will be seen once a month by my Oncologist and radiologist for two years..The consensus is that after two years if no recurrence I should be cancer free!

I have spoken and communicated with two other people who had similar but not exact types of cancer in the nasal area. Both were older males 55-65 years old. Once had mucoepimucial cancer? And it spread after having radiotherapy..The other guy had some type of nasal cancer..I have been in contact and I will get more info.

My surgery was performed at Kaiser Los Angeles and I researched that the facility is 2nd California in the number of cancer cases that are seen. My Oncologist said he has seen "A few cases like this since he began his practice in 1986..So to say this is rare is very true.

I Think I am in a better spot mentally than I was before the surgery. I could not look in the mirror before my surgery as I would weep at the thought of losing my nose. I now know that inside my nose lurked a tumor that was going to kill me, so I am more at peace with it..although it is still scary to look at my face in the mirror as you can see my sinus cavity and my sinuses in full view..I wear a bandage over my surgical area so as not to frighten the general public! But if no one is around I take off the bandage as it is annoying with all the tape etc..

I will not be able to get my nose until the first of the year..Oh by the way..have you received your prosthetic yet? If you did, which type is it? Please let me know how the process is working out for you!

After communicating with you I feel the need to meet you in person..you never know..my brother is an airline pilot and he might be able to get me over to the UK someday!

As far as eating..I did not need a feeding tube.. I was on a "liquid diet for 3 weeks and lost 20 lbs. I have trouble eating "chewy" food like steak or the crust of bread..The surgeon went very close to my two front teeth and the nerves were affected..the pain is intense but I can eat OK..not like I used to eat..but it's OK.

When you speak of being tired..it's strange..I was experiencing fatigue for 1-2 months before I was diagnosed..I thought I was out of shape or getting older..it was the cancer slowing me down..It has been six weeks since the surgery and sometimes I feel energized and healthy..then all of a sudden..WHAM a wave of fatigue will sweep over my body and I will have to sit or lay down..I work in the newspaper advertising business and my employer is encouraging me to go back to work..I don't know. I am OK on disability payments to go one year without working..However, I think going back to work might help me out on the mental side of things.

Melly, did you go back to work yet?

All of a sudden I feel very tired..but it is a "good tired" feeling..

I hope you are doing well..I have to say that this part of the Internet is great. I am glad to be able to communicate with you.

Blayne Marleaux
Cancer Survivor

ladysam said:

Dear Melly

I have registered here on behalf of my mother. She is 60 and has just had a rhinectomy due to squamous cell carcinoma. It started 2 years ago, when she found a sore on the inside of her nostril. She was diagnosed and first had 6 weeks radiotherapy. This did not clear it and she went on to have Mohs surgery at Queens Medical Centre, Nottingham. She got the all clear, but 6 months later found a spot on the outside of her nose. The SCC had beccome aggressive and she had all but the bridge of her nose removed on Monday. I'm posting here because this type of cancer seems rare and both Mum and I would like to get in touch with other people who have experienced this.

Mum is due to have a prosthetic nose made in around 8 weeks time. Until then she has to make do with a dressing. I was the first to see the area after surgery and admit to being quite shocked, although I didn't show it. I wonder if you or anyone else could give me some tips on how best to help Mum through this. She was initially opposed to having the rhinectomy, but now seems to accept that it gives her the best chance. I worry terribly for her as she can get quite low and I don't know how to reassure her. We have always been very close and live quite near to each other. I want to help without treating her like an 'invalid'.

I am also very afraid that the cancer will return and so I worry about losing her. I don't want her to pick up on this.

I would be most grateful for any advice or similar experiences from survivors or family/friends.

Many thanks

Sam

Hello Sam,

My name is Blayne and I live in Southern California. I had to have a rhinectomy on July 29 2004. I am 45 Years old and I had nosebleeds for two years until my doc finally did a biopsy and found I had SCC of the Nasal Septum. (You can see my profile "Squamous Nose that Had to Go! on the profile section of this site) I am still waiting to have the prosthetic made for myself.

I am told that I will have to wait approx. six months after the surgery to even begin the process. My surgery was a FULL rhinectomy and I had to have my hard palate removed too! This has been a life changing event and I have encountered some bizarre circumstances, however I am lucky so far that my Oncologist feels the cancer has been removed and I am not a candidate for radiation. It is amazing how your body adapts and I feel fortunate that I had a great Surgeon and have a team of prosthetic experts. I have days when I cannot believe what has occured. But the days that I feel good and have energy outnumber the bad days. I do have some anxiety about going out in public with the bandage over my former nose area, but I am used to it now.

Yes this is a rare cancer and the teams of Oncologists that I have seen cannot give any risk factors for the cancer. I was about to go back to work (Newspaper Advertising rep) but have decided to wait.

You should get your mother into a Head and Neck support group as soon as possible. There is also a web site for Head and neck cancer www.spohnc.org This really helped me so far! I don't know if your mother is aware of the Lance Armstrong story, but his book was given to me and it is an amazing story of survival!

I am still just a few months of Post Surgery recovery and yes I have looked at myself in the mirror. It is very shocking at first and some days I just don't look if possible. But with time the intense pain does subside and things do get better!

Hope this info helps you out!
Good luck.

Blayne Marleaux

melly said:

Dear Blayne,
Just the briefest of postings from me today,to let you know I have read your posting and I'm still'here', so-to-speak!
I haven't had the energy to do very much, as I've been recovering from having had yet another operation(related to the reconstruction of my appearance).
Unfortunately, just I am recovering from one operation and rebuilding my energy levels, it has then been time for me to have yet another op, that knocks me right back down again!
So,this is the first time I have been online, since my last posting to you!But as I have left my'visit'to the forum today, until after I'd completed some other PC tasks, I now find myself too tired to do my intended posting!
Best I come back on here another day, when I am feeling stronger.
Warm Wishes
Melly

Hello Melly,
I have been hoping to hear a message from you.
How are you doing?
I am doing fine, yet I am still waiting for my new nasal prosthesis and new "definitive Obturator" due to an insurance snag.
I just wanted to let you know I am thinking about you and how you are doing!

Blayne Marleaux
Nasal Cancer Survivor

vikilee said:

squamous cell carcinoma of the nasal septum
Dear Blayne--------------My name is Vicki and my sister Michelle just got diagnosed with squamous cell carcinoma of the nasal septum. We are both petrified and don't know what to expect or what's going on. She is meeting with her doctor on Wednesday in SF. At this point I don't know what her prognosis is. We have heard that MD Anderson in Houston is a great place to go for treatment. Have you any knowledge of this? I'm so sorry that I didn't ask how you're doing; how are you? Well, I have probably taken up enough of your time. Thank you for letting me write you and I hope you're well. Sincerly, Vicki

hi vikilee, i'm so sorry to
hi vikilee, i'm so sorry to read of your sister's diagnosis. i just had that petrified feeling when my dad was diagnosed with SCC of the sinus. i guess you've had your priliminary appointment now, i hope it went ok? i came to this forum to find support for my dad and to talk with ppl who has his type of cancer, if you have more questions about your sister's diagnosis, i'll try to help.

Blayne? i notice the last post from you was 2004, but i read your profile and you're still active here? you have had a very similar experience to my dad, from the surgery to no radiation and chemo. would you mind if i have a load more questions for you or maybe pm you here? thank you

My sister Michelle
Hi everyone-------Today is 11-14-08 and my sister Michelle had a Rhinectomy this afternoon. We were at the hospital for about 13 hours and just arrived home a little while ago. After the surgery, her doctor came in and told us that they removed her entire nose and some tissue above her lip and shaved off some of the bone in her palate. We were also informed that the tumor has spread to the skull base; just aboe her eyebrows and she will need another surgery with a neurosurgeon. Her biggest fear is having this disease spread to her brain; partially because my father died from a brain tumor (glioblastoma multiforme). Has anyone out there received their prosthetic nose yet and how real does it look and feel. We are all trying to reassure her, but this cancer is so rare that we cannot find anyone to talk with her. She lives in Marin County, just north of San Francisco. If you know of any support groups or anyone with this disease, please leave word at this site. Anyway, thanks for letting me vent and I hope all of you are better and on the road to a speedy recovery. Love, Vicki