concerned I have sinus/nasal cancer. opinions suggestions?

RemoWest · August 2008

Hello
about 2 months ago I had an odd feeling, like the start of a cold in my left sinus area and a burning sensation( like a hot poker) in the left sinus the area behind my nose. dr.examined me, said sinuses were extermely swollen. he gave me a course of antibiotics, a week later I went back not much better.. another course of a different antibiotic. 3 weeks later I went back , the cold seemed to clear but I still had the burning sensation but it was getting worse. forward 3 weeks and an ENT appointment. I told him the symptoms and that I'd had 3 courses of different antibiotics.
he briefly looked in my throat nose and felt my neck, for lymph node swelling I assume, then ordered a CT scan of the sinuses. I got the CT the very next day.

forward 2 days later, burning pain steady and now in roof of mouth and left upper teeth.
called ENT, he advised go to the ER, as the CT didnt show any conditions that would cause such serious pain. inital diag ,trimingal neurolga.

In the ER I recieved pain meds (no effect), normal blood work up and MRI/MRA scans (no contrast) all results negative. additionally I went to the ER at U of M 2 days later as the pain continued. recieved normal blood work up, pain meds (no effect) neurological exam. and am additional 2 part CT scan.. results negative. now an appointment to see a neurologist.

forward 3 days, the neurologist discussed my pain wich was still primarily in my left sinus / left roof of mouth area. also some pressure and sensativity in left cheek and nose. she scheduled me an appointment for a pain clinic (in december) unacceptable! there supposedly that busy.she ordered a CT with contrast to be sure there were not any masses on tumors on any nerver she said. her inital diagnosis atypical face pain.

I have since scheduled an additional ENT appointment as my left sinus constantly burned like theres acid in my head pain scaly from 1-10 usually 9-10 never under an 8-9. I have also noticed my symptoms are increasing, I have pain in the left sinus when breathing in talking or swallowing. I have a moderate headache on the same side and when I touch my head I can feel it all the way to my sinus/affected area. my sinus actually feels fairly clear and I can breathe well.

I just today looked inside my left nostril and it's blood red and has flaky skin area, like dead skin, I rubbed it and It started to bleed. my nose is numb and hurts at the same time.

the pain is 24/7 I am having serious difficulties at my work as well as daily life. the pain never stops and is severe, I feel it even when I walk or when driving from road bumps. It's almost impossible to sleep as well, im so tired all the time.

sorry to be long winded but I wanted to be as descriptive and accurate as possible.

Thanks for any input

train-nut · August 2008

I wish I could be of some
I wish I could be of some help but, at best, can only offer a thought or two. The MRI excels at seeing tissue abnormalities; the PET/CT is tops for bone and tissue problems. Lots of extreme pain, different locations, negative scan results...just doesn't sound like cancer to me. Several real longshots: one of the worst allergies of all time, unusual side effects from medication you are taking. Perhaps seeing an internal medicine doc would uncover something because of his/her broader approach. Please keep us posted on how you are doing. Rich

wboaz · August 2008

trigeminal neuralgia
My father-in-law had this about 10 years ago. For him the pain was in his face, forehead down to his upper lip. It felt like it was on fire according to him. This is an extremely painful condition that is usually caused by irritation of one of the branches of the trigeminal nerve. His was resolved by using a gamma knife to radiate the nerve at the point of the irritation. This radiation "fluffs up" the sheath around the nerve to give it a bit of insulation from the irritation (a pulsing blood vessel rubbing against the nerve). If they haven't found any masses with the CT then the only other option I could think of that hasn't been presented is shingles (I am not a doctor though).

Good luck and let us know what they find.

RemoWest · August 2008

sincerethanks for the replies,more thoughts...
thanks for the replies guys, I appreciate the imput.Initally I thought It was trimingal neuroalga. I dont think it's trimingal neuroalga now, although that condition affects the fifth nerve and appears somewhat similar to my symptoms. thats where the atypical face pain diagnosoa came in (from the neurologist). typically trimingal neuroalga is somewhat intermittent. actually my mother found out about a gentleman that had trimingal neuroalga about 3 years ago through discussing my situation with a family friend. his wife and he invited me and my mother over to discuss his experience. they were great people and had some good first hand information about trimingal neuroalga. the gentleman said his would come and go and was only in his forehead, although the frequency of his attacks became more and more frequent with time...eventually he was bed ridden. I had been searching online for about 3 weeks prior and found out about quite a bit trimingal neuroalga. this guy had the surgery and was cured, Im happy for him because I sorta know what he was going through, only my pain is 24/7. so I dont think I have trimingal neuroalga or atypical face pain,I dont know what to think.
I obviously fear cancer due to the progressive pain symptoms in the left sinus area and in my head and the area inside my nose thats bright red and scaley and bleeds easily,as well as being numb. it also hurts in back of my mouth/upper sinus area where they me when I speak or breathe. I think im going crazy. the pain is extreme and no pain relievers do anything noticable to address it. maybe I'll get an idea when the ENT looks inside my nose with the scope on sept 2nd (like he should have done when I saw him 2 weeks ago).

I apoligize if I repeat myself or tend carry on, im just in a ton of pain and worried as hell. feels like im a burden to myself as well as my family due to all this.

sincere thanks for the replies, I will keep you posted

slickwilly · August 2008

RemoWest said:
sincerethanks for the replies,more thoughts...
thanks for the replies guys, I appreciate the imput.Initally I thought It was trimingal neuroalga. I dont think it's trimingal neuroalga now, although that condition affects the fifth nerve and appears somewhat similar to my symptoms. thats where the atypical face pain diagnosoa came in (from the neurologist). typically trimingal neuroalga is somewhat intermittent. actually my mother found out about a gentleman that had trimingal neuroalga about 3 years ago through discussing my situation with a family friend. his wife and he invited me and my mother over to discuss his experience. they were great people and had some good first hand information about trimingal neuroalga. the gentleman said his would come and go and was only in his forehead, although the frequency of his attacks became more and more frequent with time...eventually he was bed ridden. I had been searching online for about 3 weeks prior and found out about quite a bit trimingal neuroalga. this guy had the surgery and was cured, Im happy for him because I sorta know what he was going through, only my pain is 24/7. so I dont think I have trimingal neuroalga or atypical face pain,I dont know what to think.
I obviously fear cancer due to the progressive pain symptoms in the left sinus area and in my head and the area inside my nose thats bright red and scaley and bleeds easily,as well as being numb. it also hurts in back of my mouth/upper sinus area where they me when I speak or breathe. I think im going crazy. the pain is extreme and no pain relievers do anything noticable to address it. maybe I'll get an idea when the ENT looks inside my nose with the scope on sept 2nd (like he should have done when I saw him 2 weeks ago).

I apoligize if I repeat myself or tend carry on, im just in a ton of pain and worried as hell. feels like im a burden to myself as well as my family due to all this.

sincere thanks for the replies, I will keep you posted

facial pain
None of us are doctors but most of us can relate to pain. And I will say I hate the pain scale as everyone has a different level of pain they can handle. Without something showing up on the MRI's or Cat Scans I can see why the doctors would look at nerve related problems. I spent 2 years with facial pain and had numerous root canals on my upper right side. Finally a bump appeared next to my nose and the roof of my mouth felt soft. And the pain was out of control. To cut this story short, I had lymphoma in my facial nerves and from my sinus to my right jaw bone. My lymph glands were not swelled and it took 4 months to find the cancer at U of M. U of M ENT never quit looking for my cancer and it took the removal of the facial mass and 7 biopsies to find. I have Dr Marentette to thank for never giving up in his search for my cancer. In my case the lymphoma did not present like it should of and was not in the right location. I don't think cancer knows any bounderies and if you add chemical exposure into the mix its even worse. Don't be afraid to get on the phone constantly and try to push your appointments forward. Tell them to call if any opening appears in their schedule. Write down you daily pain levels and symptoms so you don't miss something when you see the doctors. And we can all pray you don't have cancer and its something that can be repaired. Best of luck

Ernie713 · December 2008

Sinus Cancer
My daughter, age 52, was diagnosed with sinus cancer in September 2006.
She had been going to various doctors for 3 years with symtoms similar
to those you described. She was told by a highly respected clinic that
she had been to so many doctors that she should consult with a psychiatrist.

She felt many of the symtoms you described and she thought she might have cancer
and nearly all her doctors thought and tried to convince her otherwise.

The very next day after being diagnosed at the clinic, she went to an ENT
surgeon who read a CT scan that was previously ordered by another doctor
and he saw what he thought was an abcess. He took biopsies, but he thought
that there was a 90% chance that it was not cancer. Two weeks later he
sadly told her she had cancer and had to be operated on as soon as possible.
It was in stage four when it was finally diagnosed.

She had lost half of her palate and almost her left eye. She lasted only one year
after the opperation. She had an aggressive form of cancer called squamous cell carsinoma.
I truly hope that your sickness is found to be different than hers was.

bigdeck1 · September 30

https://csn.cancer.org/discussion/161911/concerned-i-have-sinus-nasal-cancer-opinions-suggestions

bigdeck1 · September 30

I had the same problem,my dr.told me it was post nasal drip and told me to use flonase,6months later she said same thing but sent me to ENT, after I explained the problem the Dr used a camera and went into my sinus.they found scammous cell cancer.i start chemo and radiation on Monday Oct 7

wbcgaruss · September 30

bigdeck1, Welcome to the CSN Head and Neck discussion forum.

So sorry you have to be here but we are all here in the club nobody wants to join.

If you can please give us more details of your cancer such as staging 1,2,3 etc.

What is your treatment protocol, pretty much the standard is 35 rads and 3 chemos.

Please keep us updated and we can help you through this difficult time.

You can do this.

Our motto here is (NEGU) Never Ever Give Up.

Wishing You The Very Best

Take Care, God Bless,

Russ

I highly recommend you check out the "Superthread" at the top of the Head and Neck page as it is loaded with links and info to help you.

bigdeck1 · September 30

I have 7 chemos,1every Monday,and 7 weeks of radiation,I have radiation daily for 7 weeks,they have never told me the stage of my cancer.I'll have to ask

wbcgaruss · September 30

Very well bigdeck, I hope your care team has prepared you for the fact that this can be very difficult treatment, especially about 4 weeks after treatment during which time they say radiation is still cookin is the term that is usually used. This treatment is difficult but doable, I don't recall ever hearing of anyone not finishing it.

I hope you had your teeth checked out by your dentist and all issues fixed and bad teeth pulled prior to starting treatment.

Have you had your radiation mask made yet?

Take Care, God Bless

Russ

bigdeck1 · October 18

https://csn.cancer.org/discussion/comment/1718261#Comment_1718261

I've had two teeth removed and had my mask made a week ago,they also did another CT scan,the Dr told me this will probably be the hardest thing I've ever done,not looking forward to it

bigdeck1 · October 18

I've had 2 chemistry and 10 radiation, my mouth is so dry I can't sleep at night,I've been doing the mouth rinses with baking soda and salt,I've also been using a gel,but nothing is working,anybody have any suggestions, I've heard there is a prescription for it but I don't know,please help

bigdeck1 · October 18

That was 2 chemotherapy

wbcgaruss · October 18

Hello, Bigdeck, your doctor is probably right it will probably be the hardest thing you have ever done in your life, I know it was for me, but though it is tough it is doable.

Many have gone through this treatment. It is a tough slog getting treatment every day but I think they don't give it on the weekend so you have 2 days to recover somewhat and go back at it for another 5 days. This is your job now, your focus on getting through 5 more days till you get to the end. Never give up get all the treatments in.

OK, this treatment can affect us in so many ways and for one thing, the radiation can give you a crappy taste. And as you go on your mucous can get thick, very thick so you want to rinse as often as necessary to have your mouth cleaned out from thick saliva and other foreign matter, plus even though it doesn't feel or taste that great on the inside of your mouth the salt baking soda rinse helps. So stick with it it helps. Also in between spitting out what you can help.

As far as dry mouth goes you need to constantly sip water, coffee, Gatorade, soda, or whatever seems to have the best or most tolerable taste to you. You can also chew gum. The best gum I have found is Trident because it has the most Xylitol in it which helps with saliva. I use it many times not even chewing it I fold it in half and put it between my cheek and gum and it seems to promote saliva flow that way.

Of course, that's when you are awake. When sleeping, I always used Xylimelts. They are made just to help with dry mouth. They are hard lozenges in two different colors. You put the dark side against any teeth you have or gum line, and it adheres to that surface so it is not loose in your mouth and thus is not a swallowing danger while you are sleeping. It dissolves slowly, helping with dry mouth. Also, there is a CVS brand called Dry Mouth Discs. And also lately there is a spray from CVS that I am satisfied with called Moisturizing Oral Spray.

Pictured here.

Last but not least, any severe effects you are having are probably normal for the treatment you sre receiving and you just need to do what you can to tolerate them. If you have pain get on a schedule of taking pain pills to stay ahead of it don't wait till you are hurting.

As far as sleeping if you have a recliner that is the best thing to use during treatment. Laying flat or almost flat on a bed tends to concentrate mucous in the wrong area and the wrong way and it tends to go to the throat area and you wake up gagging and coughing. You still will have this issue but not as much because you can partially recline or recline more if you can to be comfortable and when you wake up with the thick phlegm it is easier to get yourself up and manage. Keep a waste can handy, I always like to put some crumpled newspaper in the bottom or as much as you want to soak up some of the phlegm you are going to be spitting in it. I also kept paper towels cut in 1/4's (Quarter Sheets) handy for little spills or other things.

I hope this helps in some way Big, hang in there, you can do this, many have and you can too.

NEGU (Never Ever Give Up)

Take Care, God Bless

Russ