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squamous cell maxillary sinus cancer--anyone???

RedE2NJoy's picture
RedE2NJoy
Posts: 20
Joined: Aug 2009

Is there anyone out there that is dealing with squamous cell maxillary sinus cancer? I have been searching this site and others trying to find someone to exchange information and/or encouragement with...to no avail.
I was diagnosed in Feb or this year (2009), and in March, had surgery where about half of the roof of my mouth was removed, the upper right jaw, part of the right cheek bone, alot of tissue and muscle from the right cheek and the lymph nodes in the right side of the neck.
I had 32 radiation treatments and 7 chemo (cisplatin).
My Doctors have all told me it is a rare type of cancer, but I find it hard to believe I can't find someone out there who has shared the experience.
Thanks for reading and hope to hear something...
John

Corinne307
Posts: 1
Joined: Sep 2009

Hi John,

I believe the cancer you had is pretty rare but I thought I would write just to encourage you. My mother had sqaumous cell carcinoma in her upper palate and had all of the roof of her mouth removed along with some lymph nodes. Her cancer was pretty advanced and they thought they were going to have to remove her eye, but they were able to save that. She had an intense round of radiation. I am not sure how many treatments she had. The happened years ago...probably twenty or more. She survived the cancer and went on to live a fairly normal life. They fitted her with an obturator after one year (which is a set of false teeth that fit the hole that was left by the surgery). She could eat a wide variety of foods and was not really limited although I don't think she could bite into an apple or eat corn on the cob, but other than that..she did okay. She did carry a cup of ice with her everywhere (and if we went anywhere we carried a small cooler with ice for her to refill her cup...she was never without that cup of ice) because her saliva glands were either removed or compromised.

Amazingly enough, and I find this truly amazing, she didn't have much pain as a result of the surgery. I personally have had jaw surgery done (not for cancer, I had it to correct a narrow airway) and got nerve damage in that surgery and I live with chronic nerve pain that will never go away and pain meds are not effective on nerve pain. So I find it amazing that my Mom's surgery was so much more invasive but no nerve damage at all.

Anyway, she did survive the cancer and she lived for 25 yrs more and died of natural causes (old age). I am sure your treatment was much more advanced and probably more effective. Even though the cancer was not in the same place, it was close. My prayers are with you...this is tough but there are people who have had cancers like you and have survived.

Corinne

RedE2NJoy's picture
RedE2NJoy
Posts: 20
Joined: Aug 2009

Corinne,

Thanks for your reply, comments and prayers.

I am VERY thankful for the advancements that have been made over the past 20-25 years. The techniques in radiation alone and how much more specific the direction of beams is incredible.

The similarities are remarkable. I have frozen water bottles in the freezer all the time to carry throughtout the day. Take a drug called Salagen to help produce saliva, but it just can't supply enough. If only they could redirect fluids....my tear duct on the right eye was damaged and that eye waters continuously.

I have some pain in the cheek and jaw where bone was removed. Fortunately pain meds help me keep in comfortable enough to function fairly well. My biggest issue right now is the limited mouth opening. I can only open to about 13mm and 50-55mm is 'normal'. Keeps me limited to small bites that I can squeeze between teeth and then chew if necessary on the left side of my mouth.

Thanks again and wishes for happiness and health are sent your way.
John

nursecarter's picture
nursecarter
Posts: 3
Joined: Apr 2010

Hi John,

I was seeking information on squamous cell sinus cancer, when I read your page. I hope you are doing well. I said a prayer for you. My mom had a biopsy today and the doctor said that she either has squamous cell CA or a benign tumor called epithelial inverted papilloma. We get the results back on Friday. I am praying so hard that it is not cancer. It sounds like you have went through such a terrible ordeal. I am so sorry for your pain. Please let me know how you are doing and if you have any more info to share on this disease, I would appreciate it. Since it is rather rare, I am not finding much research on it.

Thank you so kindly,

Angela

tesa's picture
tesa
Posts: 120
Joined: Feb 2011

hello,
my mother had tumor in nasal cavity and left side sinus. She underwent surgery in june of 2010 and completed 6 weeks of radiation in august. her doctor in fe. saw mass near eye on mri, did biopsy that was negative. Pet in april lit up and they did biopsy last week and said it looks like a recurrence in the orbital eye area because tumor grew, was firm, and had necrosis. They say she will probably lose that eye. Please tell me more about your experince and how your doctor is. We are not pleased.

Danjack's picture
Danjack
Posts: 8
Joined: Jun 2012

Hi,

I am having an operation in a few days time to remove my cancerous tumour. For me it is too late to save my eye, it has grown around the back of my eye and to remove it will affect to much of the eye for it to function properly, plus following radiotherapy will damage the optic nerve, so better safe than sorry! I have been quite attached to my eye for 34 years so will be sad to see it go. What this also means though is I will not be able to have a standard glass eye as the eye lids are going to, leaving a hole in my face, so I will get one of those plug in eyes in time.

Like many people it seems that info on this surgery is hard to come by, so anyone had to have the same? My surgery will be open faced meaning they will cut from my lip, up the crease of my nose and pulled back from there, so sounds awful but should be Harley noticeable once healed? Also I have read that reoccurance is quite high?

What was it like after, was it painful? How long did you stay in hospital for?

Any comments are appreciated,

Dan

susie4276
Posts: 2
Joined: Jul 2012

Dan, I had to have my nose completely removed along with my pallet and teeth plus lymph nodes last Dec. I was misdiagnosed 7 times before they found it was cancer. I didn't lose my eyes but my upper lip is gone along with the nose. My Oncology surgeon said they had to remove a lot of healthy tissue and bone because they only had one chance to save me. I will tell you that this cancer is rare as you know. I have searched the web in hopes of finding someone who has had it. If you need to talk please feel free to pm me. I would gladly answer any questions I can..Yes it is painful afterwards at least mine is. I didn't know that I would lose 2/3 of my face until I woke up. I wish you good luck and a quick healing. I am not sure about the reoccurance rate. My surgery lasted a little over 9 hours. ..I will keep you in my prayers. ~Susie

quemon
Posts: 9
Joined: Jan 2012

Wow, Hi Dan, wish I had seen this sooner, but now wondering how you are doing. My husband has recently gone through almost exactly what you have just experienced. His tumor was around the back of the eye, through the orbit and bones in the cheek, forehead and attached to the front left lobe of his brain. Also spread to the lymph nodes both left and right. The surgery was radical to say the least.

Hope you are well enough to send an update and perhaps we can compare notes on reconstruction etc.

m

Danjack's picture
Danjack
Posts: 8
Joined: Jun 2012

Hi Guys,

 

Thanks for your replies and support... I'm sorry I have not replied earlier, I thought I would have recieved some notification from the site to say that someone had commented... never mind!

Well what a year! I'm pleased to say that I am doing well and for the benefit of anyone about to have something similar here is my journey so far...

The operation went well. As I described before the cancer had grown behind the nose into the sinuses, reaching deep within the chamber behind, and into the eye orbit. There was no pain, just an irritation to my eye which caused it to water. The removal of the eye is the most notable difference to what was removed but the tumor itself was large, but contained.

I woke after to no pain, and really after a couple of days the slight disorientation of using only one eye became less noticable. The surgeon was confident he had got it all and took a good margin so the risk of it regrowing is confidently low. I was sent home with some powerful painkillers, but an enexpected side effect from surgery was a severed nerve, so I had no feeling to that part of my face, so maybe a blessing.... I took the painkillers for a bit, but realised quickly I was getting no benefit.

The next week the stiches were removed.. everything fine... it was noted that the corner stich had already fallen out. After a couple of weeks this corner area started to open slightly, maybe a pinprick sized hole. I was told that the skin had not joined properly... quite common, but nothing that could be done now, and wouldnt be tackled until the radiotherapy had finished.

I had 30 sessions of high dose radiotherapy which took 6 weeks. Within this time I also had 2 cycles of chemotherapy. The radiotherapy didnt affect me other than I felt a bit more tired than usual... the chemo did wipe me out for a week or so  after. The most annoying thing about chemo was the sound of the pump thing that kept me awake all night while it flushed me through with fluids after the dose.

During this time the small hole in the corner got larger, and larger... and continues to do so some 4/5 months after radiotherapy finished. It was actually a couple of weeks after radiotherapy finished it hit me... i felt really tired... I had scorch marks on my face (localised) and I lost a neat rectangular shaped patch of hair from the back of my face, and also my facial hair had new lines where the hair wouldnt grow.

I also lost my sense of taste and smell. This is now coming back now, and my hair has too albeit slightly darker than before!

Ongoin since the op has been the need to wash out the nose.... this by far has been the most annoying, inconvenient, embarassing, gross but satisfying side effect. Its a daily task, at least twice a day. Once you get used to squeezing water up your nose (a skill in itself) without drowning yourself, its a doddle and as i said satisfying. (when you see the gunk come out and being able to breathe properly again!)

The hole in the corner of my eye and nose has grown large now..... it provides an interesting insight to the inside of a head, i suppose if i tried i could get a ping pong ball in there.... as i said its quite big, i can use my fingers to pick away at the crusted on goo that sets everyday each time i fluch through.... sounds gross... and it is for anyone watching.... but again satisfying.

Recently i have had the implants exposed and the end caps screwed on ready for the prosthetic eye to attach too. Its always weird looking in the mirror and seeing the 3 studs poking out of my face! Its weird to ouch them, as they are screwed into the skull, they form a solid part of me, but to touch there is no feeling obviously.... weird!

Also I had a eyebrow lift as when the eye was removed, the eyelids were sewn together to form the lining for the orbit, as a result it pulled my eyebrow down, so its been lifted.

To follow soon is to cover the hole... they tell me they will take a large patch from my forehead, but not completely removed, so that a blood supply still services this patch. It is then "flipped" down somehow and sewn into the hole. They wont do this until the effects of the radiotherapy have completely ceased and the skin looks like a normal colour... this is now getting a frustrating wait as i really want this done so I can be free of the hospital once and for all!

I have received in my experience and from what I have seen and heard in comparison the best care possible. I am from the UK and I thank the surgeon that was honest enough to say that he knew a surgeon that would do a better job than him!

So finally my advice is to not worry.... go with the flow.... every treatment is specific to you, so try not to compare too much. If you have a facial feature removed, its not the end of the world.... ok things will never be the same, but whats the alternative.... they took my eye to save my life, and i would do it again tomorrow... maybe not the other eye... but definatly my nose, and I feel sorry for those that have had some of their mouth and palette removed... wouldnt fancy that either.... but im sure anyone who has would say the same!

 

 

 

quemon
Posts: 9
Joined: Jan 2012

Wow, thanks for the update.  My husband went through exactly what you went through on May 30th, 2011.  His cancer had advanced to the brain as well as the sinus so was tricky also.  We are almost 2 years out and the worst seemed to be over.  Recently he has develped a hole as well in the corner of the skin flap over the orbit.  I have been sitting here terrified that it is a return of the cancer, but I suspect that he has the same issue as you!  Whew.  When he flushes his nose, the water squirts out of his eye, we think this could be a fine pub trick with beer, but are also very concerned!  Having been the caregiver I appreciate what you have gone through, a true warrier!

Danjack's picture
Danjack
Posts: 8
Joined: Jun 2012

Hi how has this ended up? I would expect after 2 years that everything had settled? Mine was almost immediate, and now a sizeable hole, but covered by my prosthetic. Hope all is well now

medic 11's picture
medic 11
Posts: 2
Joined: Feb 2013

i have a question i was diagnosed with nasel cancer last feb and went threw two surg and chemo and radiation i have no smell or taste and it will be a yr in july and its feb 2013 but im concerned reading about a cancer behind the eye my left eye constantly runs looks like im cring all the time i have had my mri and show no problems but they tell me my eye has a blocked tear duct after reading about a tumor behind the eye maybe there over looking something uggggg im so scared and more confused

 

Danjack's picture
Danjack
Posts: 8
Joined: Jun 2012

Hi, I've not checked in here for a while. By now I'm sure your eye will be diagnosed and dealt with. My symptoms were that my eye constantly ran, like I was crying, but the scan was obvious, so guess you should take some reassurance from that. I still have no real taste and smell is pretty much zero, but I hardly think about it.

im currently trying to get this hole in my face repaired, the forehead flap is no longer an option, but am pleased with my prosthetic.

KTeacher
Posts: 874
Joined: Jan 2011

Old post, new response.  I usually post on Head and Neck forum.  I don't know how I missed this post, I have been on CSN for a few years now.  I just finished my 3rd go around with 'c' at the end of February.  In the fall of 2012, I started having double vision, after many appts and scans, my cancer had spread to the orbital nerve.  Nov. I had my eye removed.  During chemo and radiation I had a sinus abcessw,, another surgery.  Seem to be having a lot of sunus problems, I think due to radiation damage.  I will have my first post Scan in July--then find out about possible surgery and then maybe prosthetic.  What type of prosthetic do you have?

I also go to the website Lost Eye.com, it has been very helpful with recovery and monocular issues.

Bev (KTeacher now retired)

quemon
Posts: 9
Joined: Jan 2012

Hey Dan, hope you are doing well and far into recovery mode.  My husband had an experience very close to yours, other than the tumor had also attached to his brain and spread to the lymph nodes on the left side.  His face was cut much the same as yours, but also from one side of his neck clear across to the other side of his chin!  Craziness.  this was followed up by some kick ass radiation and then a year of recovery!  In between he lost all of his teeth due to radiation damage, bah.  We are just rebuilding the million dollar man as we speak.  Fittings have begun for a facial prosthesis as well as new teeth!  Soon all will be whole again.  How are you doing?

 

m

shanee555
Posts: 2
Joined: Sep 2011

Hi John,

I work in a hospital in San Francisco and we have a patient that was recently diagnosed. He is also looking for someone to connect with who has been through the same experience. He had a resection surgery and is about to begin radiation. Please contact me if you're interested in connecting with him. Thank you!

medic 11's picture
medic 11
Posts: 2
Joined: Feb 2013

Hi my name is lisa i know your post was an old one but im hopeful your still on this site i too had a rare nasel cancer and would love to talk with some who also went threw this : ) my email is lisa02@snet.net hope to hear from you

Danjack's picture
Danjack
Posts: 8
Joined: Jun 2012

Hi just me again. I have made a blog with my full story and pics. Please take a look www.igoggle.wordpress.com
Kind regards

Dan

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