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squamous cell carcinoma of nasal septum

melly
Posts: 7
Joined: Dec 2003

I am a 32 year old female, in the UK and I have just been told that I have squamous cell carcinoma of my nasal septum.It has eaten away much of my septum and spread out into some other nasal areas.It has also eaten away at the bone above my 2 front teeth and into my hard palate.I have been given the choice of having just radiotherapy or having surgery followed by radiotherapy.If I have surgery, I am told they will remove my nose, part of my lip and that I will lose my 2 front teeth and more bone from my palate. I need more answers about both options but am concerned as no mention has been made about nasal reconstruction.Only that I would have a nasal prosthesis put in. I would love to hear from anyone else who has had this kind of cancer (as i am told it is very rare) and who would be able to tell me about the treatment they received and if they were successfully reconstructed after surgery.In particular, I am keen to know if anyone had just radiotherapy, without surgery and experienced success with that.

thobby
Posts: 1
Joined: Jan 2004

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

sams@ntcallaway.com
Posts: 9
Joined: Jan 2009

Hi Teresa
My husband is completing treatment for stage IV nasopharyngeal cancer and boy has it been grueling.What stage were you?I am trying to find out whether this type of cancer is slow or fast growing.Would you happen to know?

Best to you,
Susanne

vietnamvetwife68
Posts: 9
Joined: Mar 2009
vietnamvetwife68
Posts: 9
Joined: Mar 2009
brandy l
Posts: 1
Joined: Dec 2009

we just found my husband has cancer of the sinuses. i am so scared. his family dr. did not get him help when he told the ass his lymph nobes were getting bigger. the dr. pretty much blew him off. finally after 6 months sent to specialist that found the mass. my husband had lost his hearing in his left ear also. i just wat him to get threw this ok. they say they got it all of mass, as far as we know it as not spread. we won't know until friday talking to another dr. i don't want to loos him. he's alreday been threw back surgurys. he is not as bad as some. they did say he is cureable. he's 57. i am 46. my spelling sucks, sometimes.

snoopneng
Posts: 1
Joined: Jul 2010

please tell me if ur cancer is still there and how do u take care of it.
cause my dads cancer is getting worse. his on stage 4 which they say he could die any moment now. if anyone who could help a little could u get back at me i like to talk to u thanks.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

HI Snoop.

Can I suggest you start a new post because this one is buried deep in a very old thread. You are more likely to get some response if you post a new thread.

All the best.

Scambuster

sgendrolini
Posts: 11
Joined: May 2003

hi,
you could also ask your doctors about PDT photodynamic therapy. My husband has squamous cell cancer of the parotid (salivary) gland. radiotherapy and chemotherapy didn't work for him. Surgery isn't possible as there is no way of getting a safety margin. So we are looking into pdt.

my thoughts are with you - I hope things work out

amarleaux2's picture
amarleaux2
Posts: 18
Joined: Jun 2004

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

cysutton
Posts: 1
Joined: Jun 2004

Hello there! I hope you're doing well. I've been doing a lot of research on nasal reconstruciton lately, because I believe I have BCC and will soon need surgery on my nose. Anyway, I came across info on this doctor at Johns Hopkins in MD who specializes in complicated nasal reconstruction. His name is Dr. Patrick Byrne, and there's an article on the JH site that talks about his surgery to reconstruct a woman's nose after surgery for nasal septum cancer. You may want to check him out.

Hope this helps,
C
Virginia

kathyrene
Posts: 1
Joined: Jul 2004

Hi - I'm new at this. Question: my husband has a hole in the top of his mouth that is now completely through to his sinus. It started out small and now is as large as your middle finger. Twice pieces of bone have dropped out. Do you know of anyone who has had this?

melly
Posts: 7
Joined: Dec 2003

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

amarleaux2's picture
amarleaux2
Posts: 18
Joined: Jun 2004

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
Posts: 7
Joined: Dec 2003

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

amarleaux2's picture
amarleaux2
Posts: 18
Joined: Jun 2004

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
Posts: 7
Joined: Dec 2003

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

amarleaux2's picture
amarleaux2
Posts: 18
Joined: Jun 2004

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

melly
Posts: 7
Joined: Dec 2003

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

amarleaux2's picture
amarleaux2
Posts: 18
Joined: Jun 2004

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

ladysam
Posts: 1
Joined: Oct 2004

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

amarleaux2's picture
amarleaux2
Posts: 18
Joined: Jun 2004

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

vikilee
Posts: 4
Joined: Oct 2008

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

bany
Posts: 38
Joined: Jun 2008

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

CroationGal
Posts: 5
Joined: May 2008

Hello! Since you reside in SF, have you thought about Mayo Clinic in Scottsdale, Az. That is where I had my treatment under the care of Dr. Wong in Rado and Dr. Gornet in Onc. I have been very pleased with their care and knowledge. They are worth a second opinion for treatment as well. God Bless you.....I am three years into remission and hopefuly I have beat it and I hope your sis will too! It's TOUGH treatment....hang in there!

Falseteeth
Posts: 2
Joined: Jun 2009

I started with a perforated septum. After the pet scan they discovered squamous cell in my maxilla. They removed 5 front teeth, soft palate, and found some lymphnodes in my neck. Had 33 sessions of radiation after surgery and have faseteeth,or obturator, filling up the void. Not real pretty but does the job.Still on a soft diet but back to work. My surgeon was great. Any question I can answer I'd be glad to.

Falsetreeth, R

vikilee
Posts: 4
Joined: Oct 2008

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

MLC53's picture
MLC53
Posts: 109
Joined: Sep 2007

Hi Vicki,
Check out the story on the website below. There is also an email at the end of the story where you might be able to get some more info. Prayers and good luck to you and your sister!

http://www.oncolink.org/coping/article.cfm?c=6&s=31&ss=76&id=252

vikilee
Posts: 4
Joined: Oct 2008

Hi----------------Does anyone out there; who's had a rhinectomy, wear glasses? If so, how do they fit on your face? Do you need special glasses? Also; has anyone had radiation after a rhinectomy? I'm still trying to collect information for my sister, Michelle. Thanks for all the prayers that everyone has sent. God Bless all of you! Vicki

vikilee
Posts: 4
Joined: Oct 2008

Hi-----------------------I was just wondering how you are doing and what your life is like at this point. My sister Michelle is facing chemotherapy and radiation. After that, healing and a new nose. What's it like having a prosthetic anyway? Can you, or anyone else, shed some light on this. Hope everyone out there is doing better. Love and prayers to all. Vicki

Tecolote
Posts: 1
Joined: May 2009

Just been confirmed to have scamous cell carcinoma of the nasal septum.
Inquiring about posible loss of muy septum, nose, perhaps palate and teeth, surgeon told me that such results are not anymore expected except in rare occasions. He called those procedures as old and unnecessary in most instances, adding that surgery procedures have improved.
I don't see any postings for years 2008 and 2009, is my doctor correct or he is just being kind enough not to scare the hibijybis out of me?

Tecolote.

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Hi Tecolote, I had scc of the nasal septum in aug 05. I had surgery, radiation and chemo and am fine now. I had the entire inside of my nose removed. I was stage 2, grade 2,so considered an early stage. It all depends on your stage etc as to what treatments they do. Well that's how they decide on treatment here in the UK, ie the earlier the diagnosis the less treatment with nasal cancer, as with most other cancers too. My nose looks a little strange, sort of squishy and flatter and a bit bent to one side lol but hey ho i am alive. I could have reconstruction but cannot be bothered. I have become acustomed to the way I look now. Which is a major achievement, as I was soooooooooooo vain before. My life now is extremely busy and I enjoy it so much more than ever before the cancer. You can email me at tricia_halcyon@yahoo.co.uk if you would like to share your experience. I would welcome hearing about your progress. Take care luv Tricia

Jennifer48
Posts: 13
Joined: Apr 2009

WOW First off let me say how amazed I was to find out just how many people do have this form of cancer. I was diagnosed about three weeks ago and am now in treatment at Johns Hopkins, Maryland.
My cancer is in my left nasal cavity- has spread behind the left eye- has eaten through the bone that separates the nose from the brain and the cancer is on brain matter now. In my case I was due to have surgery with a neurosurgeon but before that cound happen Dr. Onc decided chemo would be better treatment. I have started chemo and I'm hopeful. Surgery would have meant going through the forehead and they really didn't get into specifics about loss. At this point I am doing chemo- and hopefully it will shrink my tumor enough for surgery without much damage (or better yet chemo wipes the whole thing out completely- that would be cool) and then radiation to blast whatever might be left over lurking. May I ask do you do what I do and try to figure out where it all came from? I've got to stop that- because its a real 'tailchaser" when you get going. Oh- sorry before I sign off -I'm 48 and female.. how old are you?
Hang in there and find out all you can..AND DO WHAT YOU FEEL IS RIGHT FOR YOU

Jennifer

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

Hi Jennifer, I had sinus cancer (esthesionueroblastoma) it was in my ethmoid sinus, nasopharnx and sinus cavity. Two surgeries (endoscopic) and 6 weeks of radiation and I am recovering nicely. I totally am with you on the "where did it come from". For months I tried to figure out what I did when I was in my wild "20's", that could have given me this rare cancer or is it from bad materials used in my brand new house (that I only lived in 10 months before diagnosed). I am 42 and work in the management offices of the 3rd largest cabinet manufacturer in the US. Could it be the wood dust? I drove myself crazy. I finally made a list of everything I thought could have cuased it and gave it to my doctor and told him I needed peace of mind. He looked at my list, kinda chucked at some of the stuff I had written on it, and told me that they believe my type of cancer is environmental related, all though there is no direct connection. And that I needed to understand that it was nothing I did to myself, it was just something I got.

I think we all try and blame ourselves when we get sick, so give yourself some peace, do what I did and make a list of what you think you may have done and give it to your doctor. He will help you make peace with it.

Cancer sucks, think positive happy thoughts, and LAUGH all the way through your treatments!!

Sirena

Rudy Zarzoff
Posts: 2
Joined: May 2009

Hi all,

Today is four years to the day since i had surgery and therapy for a squamous cell carcinoma of the nasal septum, floor of the nose (roof of mouth), and into my sinus.

I was 25 years old at the time and the youngest known case in Australia.

I has radical surgery to remove the tumour which was diagnosed as being six postage stamps in size.Everyhting other than the skin of my nose was basically removed and as a result i had skin grafts taken from my wrist as well as bone from my arm and cartilage from my ribs to reconstruct. Prior to surgery i had a tube inserted into my stomach. I had radiotherapy and chemotherapy for seven weeks. Overall i lost 19 kilograms (nearly 42 pounds)

So much has happened since then. I have had further reconstructive surgery as the radiotherpay had damaged my first reconstruction. I am currently recovering from a surgery to repair my soft palate as it was removed. Unfortunately it hasnt healed too well and it looks like the graft is dying. This is due to the prior radiotherapy treatment. I am on a soft diet and in the past three weeks have lost a further 5 kilos (11 pounds).

I really wish everyone the best with their treatment.

Take Care

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Sirenfa, I was told that one of the risks was working with wood dust! I am surprised they havent mentioned that to you.

SIRENAF42's picture
SIRENAF42
Posts: 204
Joined: Oct 2008

Not one person has said "OH my god you work around a lot of wood dust".... I read about it and asked, and it was dismissed as its not what you do, you just got it.... I have met several others with ENB and 2 of them work with wood dust, one in furniture and the other in constuction. I go to see my doc again in July and I plan on clarifying where I work and see if I should be concernced about reoccurence because I am employed where wood dust is part of my every day life 50 hours a week. In 2006, when the US was building houses at alarming rates we increased production of cabinets from 3000 a day to 10,000 per day. I got sick in 2007. Hmmmmmmm

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

I would definitely clarify that with your doctors. I remember being asked did I work with sawdust? There is also a connection with hydrocarbons and salt in the Asian diet apparently. I myself have never worked with with any of these and interstingly enough I have never taken salt with food. I am wondering if yours is an industrial injury - just thinking out loud here. I am however approaching 4 years cancer free and doing fabulous.

Sarah Sq
Posts: 1
Joined: Jul 2009

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

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

I thought I had hay fever as I felt a little blocked in my right nostril, but only mildly so. In had been to doc twice and the anti histamines hadn't worked, so I was quickly referred to an ENT specialist who diagnosed squamous cell carcinoma of the nasal septum stage 2 grade 2. I was whisked into hospital that week, radical surgery to remove septum and a lot of the inside of my nose, actually the lot inside. I then healed a bit for 6 weeks and started radiation treatment and 5 days of chemo. This was all in August 05. I am free of cancer today and enjoying life immensely. In fact I enjoy my life so much more than prior to cancer. It was the KNOCK KNOCK I and Nick (partner) needed to change our lives. Today we both do not work and try to travel as much as possible and spend all our time together. I remember thinking for such a long time that my life was over, I didnt realise it had just begun. I live in UK and was treated at the first cancer hospital in the world, the Royal Marsden, they ROCK!!!!! I just noticed Sarah your in the UK. My email is tricia_halcyon if you would like to contact me. I wish you loads luck, have you seen a specialist yet? Cos you know it could be none of the above. Tricia

Jennifer48
Posts: 13
Joined: Apr 2009

Well, lets see- I was living in NYC during the WTC chaos- I then packed up and moved to sunny Scunny where I worked in a chicken hatchery, a restaurant, a chocolate factory, and.. A FURNITURE FACTORY. I lived near the Corus steel works. I smoked, drank, and had a hell of a good time in the 80's. (NYC) I thought I was Ok until November of 2008. (We moved back Stateside) Everyone at work was getting flu shots. I never had one and was kinda talked into it by fellow co-workers at the DIY store I work at. Left shoulder- shot right into my beautiful blue moon tattoo for my manchester lads. After that I started getting like cold symtoms. So I started nasal sprays. Worked for awhile. I had headaches too- but because I work in retail I thought it was just par for the course. Aspirin knocked them out. It wasn't until about Jan./Feb. that hubby noticed I was snoring-and the snoring was really wet sounding (dont mean to be disgusting-but its true) Then it was off to drs who kept giving me prednisone and antibotics that would work for awhile but once I was off of them the cold like symtoms would come back worse than ever. March saw the beginning of severe nose bleeds-from the left nostril.Hemmoraging to be exact. I was having 4 to 6 nosebleeds a day for 2 weeks but with each nose bleed I thought I was breathing better so didnt worry too much until 1 day at work I had a bad one and a coworker decided to take me to the hospital where my nose was cauterized and then I had to go to a ENT who didnt know what he was looking at-a CT scan later showed a mass and when I saw it (though the tech said I wouldnt understand it) I knew what it was but not what it was called. (I cried- I still do some days) Then it was on to Johns Hopkins in Baltimore where i did two treatments of chemo called 5FU which shrunk my tumor by 75 percent. Note that my tumor has eaten though bone and was/is? pressing on my left eye socket and my brain. I could not stay on 5FU because of the dehydration level. Now I am in Baltimore for 35 radiation treatments and chemo 'light' (regular chemo)So far I can breathe but I can not smell. Taste is off for me. Though I still can taste chocolate so I'm blessed.Though now with the radiation doctors are worried what I will look like in 5 years- I dont really care that much- I've always been vain- now with my hairloss I cant be- all I want now is another 10 years or so to enjoy my life/husband/friends/family. The thing that really is scaring me now is what the doctor has told me about my eyesight and my brain with this radiation is that there is a 5-10 percent chance of brain damage and or vision loss. But ce le vie! I WILL LIVE. Thats how I have to think. I hope I answered your question and will write again soon-
CITY TIL I DIE
Jennifer

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

I just wanted to say I wish you luck with your treatments and a successful recovery. I lost smell and taste but can taste chocolate soooooooooooo well and hot and spicy too, so I am very lucky.
Bye for now Tricia

Jennifer48
Posts: 13
Joined: Apr 2009

Is the photo recent? If so you dont looke bad at all. I'm having a rough week with depression. How do you or did you cope with bad feelings?
Jennifer

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

Jennifer, the main photo is 5 years old before diagnosis, all the rest are post treatment, mainly this year in fact. I look sort of fine when I wear glasses, but without glasses my nose looks a bit squishy, crooked and flattish. A year after treatment I was still feeling quite down and depressed and went to see a cognitive behavourial therapist, which helped somewhat, but the chat room on this site helped me more at the time. I started taking diazapam for about 6 months and that also helped me out of the duldrums. I guess its a necessary part of recovery to feel down and depressed, but it does subside and eventually disappears altogether. Today I have a full and happy life. And I can honestly remember thinking I would never ever get "me" back. I didn't get the old me back, I got a new me and I have no complaints. I feel less freaked out now about life and my demise, which will happen one day, that's for sure lol. I am also a recovering alcoholic with 20+ years sobriety. I therefore have my 24 hour programme which has also been of enormous benefit to me. All in all I am a lucky person I believe. I remember you saying you are vain, I was too and am so much less so now, though I do still enjoy looking as good as I can, without being fixated on my looks. I was going to have a facelift just when I was diagnosed, now I can't be bothered lol. Anyway Jennifer I hope chemo is going ok for you and that it shrinks that tumour to a tiny size so they can remove it without too much facial damage. Bye for now Txxx

jmike55
Posts: 4
Joined: Oct 2009

I am in week five of radiation for nasal cancer. I think I went about six months with a bump on the right side of my nasal septum. It would bleed and I never have nose bleeds. I went to the GP and he took a swab and it came back negative (what ever that meant) and he gave me some medication to put on it. A month or more went by and I went for my annual physical and told him the nose was still a problem. He sent me to a head and neck specialist. The specialist looked at it and told me the GP was right cauterized my nose and told me to keep using the medication and saline spray. I went two more months and finally went back to the specialist who took a biopsy and two days later said I had squamous cells. He said it was sage one I guess. He sent me to an oncologist who sent me for a PET scan. The cancer was in my nose and had spread to my upper maxilla. They said it had not gone into my nasal nodes? or any lymph nodes. They did a full head, chest, pelvic exam and said they did not see cancer there. They decided on radiation therapy because the Head and Neck specialist did not think he could get the margins needed without major damage. Seven weeks is the plan. I have teeth guards, tongue guard ( have to breath through a straw in the middle of it during treatment and nose plugs. After four weeks my face is red, my nose is crusty and is clogged at night. I shoot saline spray in and blow to clear it and it is bloody. I have had two blood test to check my red blood cell count. I am still teaching and final told my students last week. I am planning on finishing the semester with them (three more weeks) and I have planned help for final exams because I probably will not want to sit in class looking like I will. My appetite is still good. I am a little tired but it is because I can't sleep more than two hours at a time. They tell me I may lose some teeth at some point but I have good teeth and the dental oncologist has me set up for fluoride trays every day after my treatments. I am hoping for the best and this site has given me encouragement. I can see that at this point I am not have as bad off as many of you but each of us has to cope with what is handed out. I was a little surprised to heard they go three months before they check to see if they got it all. I pray they do because the only option left is the surgery. I live in South Orange County, LA Calif.
I am 63 years old and have been in athletic shape all my life. I too was told this cancer is extremely rare. I was told it is more common in smokers and drinkers. I have never smoked and am a very light weigh drinker. Enough for now and prayers to all who fight this fight.

maria2009
Posts: 10
Joined: Oct 2009

Hello jmike55

I am also diagnosed with the same problem and awaiting treatment. Just wondering if you were also offered surgery to be followed by surgery and chemo. Also before treatment did your front teeth and gum hurts. It must be hard on you to be working and having treatment at the same time. I sincerely hope you are taking it all in your strides. I have also never smoked and never drink.

jmike55
Posts: 4
Joined: Oct 2009

Yes, I was told I had three options. Surgery, radiation and surgery with radiation. The head/ neck specialist did not feel he could get the margins necessary with surgery alone. I did not try to get another opinion. He consulted with the oncologist and they felt they could get it with radiation alone and that is what I went with. This was after they did a PET scan that showed it had not spread to my lymph nodes and it did not show up in other parts of my body scan. They did not feel I needed chemo. They are radiating from the top of my nose, across my face on both sides and down to my upper lip because the cancer had moved to the maxilla bone. They feel this will get it but if it does not, surgery is the only other option, the area cannot be radiated again. I am optimistic. I just finished my fifth week. Going into week six and seven and they say the worst week is after the last treatment. I am making it. My nose is crusty and bloody. It is hard to breath at night. I use nasal rinse and aquaphor. What part of the country are you in. Who diagnosed the cancer. Have you seen an oncologist, surgeon???? The only symptom I had was a bump on my nasal septum on the right side. It did not go away and it would bleed. My teeth were fine but I am told that they may not be that great after the radiation of my maxilla. I will deal with that in time. I have had great teeth all my life. Get other opinions. My GP was a help and the oncologist and the dental oncologist have been excellent. The treatment are challenging but you could do it. You will handle this. Where all had your cancer spread.

GregT
Posts: 1
Joined: Apr 2010

jmike55, your story sounds just like mine, I'm just a few weeks behind you. I went to an ENT for over a year with these problems and he just gave me Nasonex. He left town and I went to another ENT who told me it was just an infection and treated it with kefflex. Believe it or not, it was my dentist who contacted the ENT and demanded he do a biopsy.

A CT Scan from 5 months ago showed nothing and a new scan this month showed a mass both in in and under my nose. The biopsy did come back as squamous cell carcinoma. The ENT admitted to me that if the dentist hadn't called him he would still be treating me for a infection.

I have the first visit tomorrow with the oncologist, but after reading most of the stuff on the net I don't have high hopes.

I don't know how to tell my daughter.

thegirlfriend's picture
thegirlfriend
Posts: 147
Joined: Sep 2009

THank God for dentists. My boyfriends dentist also is the one who immediately sent
him to an ENT for a biopsy. What is it about the dentist and the gen practioner that
seem so different in being able to diagnose for cancer??

Kathy

jmike55
Posts: 4
Joined: Oct 2009

It has taken me awhile to figure out how to reply in the site. Anyway, 7 and half weeks of radiation failed to kill my nasal cancer. We took that as the first option because the head and neck guy said it was small and localize and radiation should be enough. A month later, he biopsied it and the cancer was still there. He did surgery taking out my nasal septum and scraping my maxilla. Six days later another head and neck guy did some reconstruction so you could not tell I had surgery. The inside of my nose was a mess for a month. Then the cancer surgeon guy didn't like what he saw and biopsied again. Cancer is back and meaner than ever. My only option is radical surgery. I feel the tumor growing by the day. My surgery is two days away. They say they may of to take my nose and the bone above my top front four teeth. This is terrible, I have great teeth for my age 63 and am in general good health. Prayers around and my advice to everyone is to get biopsied right away and go with surgery first so radiation can come after. I am stuck with surgery. I am optimistic still and anxious to get this monster out of me. I have a great network of family, friends, students who are all praying and pulling for me and love me no matter what I look like.

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