Im sorry to keep posting on which probably is trivial stuff but I'm worried and I need some advice off you wonderful ppl. I've posted a couple of times but a quick run down is....
Stage 1 tonsil cancer, 7 weeks daily rads now 3.5 months post Treatment recent scan shows small uptake in tonsil fossae max uptake 3.5 baseline 8.9
I recently have had a couple of post treatment symptoms like sore ears etc but my radio onc said it is verrrrry unlikely to be cancer related and that it is still probably healing etc.
My new question is, I sometimes get a small taste of blood in my mouth, first noticed two weeks prior to my last pet scan and put it down to healing etc. I've had a good look in my mouth today and if I stick out my tongue all the way and on the side that has been rad I can see a small ulcer and it now feels kind of rough on that side when I swallow. What does your tongue normally look like all the way back there? Given that the taste of blood etc was a couple of weeks before my pet could I safely assume this is also a healing issue? X
The rule is any sore in your mouth that has been there for 2 weeks or longer and has not healed on its own, it should be checked by a professional.
Sorry cant tell you what your tongue is supposed to look like, I cant stick mine out far enough to see that area. As far as the taste of blood goes, if you dont see blood then dont worry. Your sense of taste will be way off for many months. It can take a full 2 years for it to fully recover from rads.
Its very normal to fear a recurrence after going thru so much with oral cancer. Its both good and bad that you are now extra aware of any changes in your mouth, also it can make you worry excessively about something you have no control over. An informed patient is their own best advocate.
Thanks Christine, my Ent is away but I'm going to make an earlier appointment just to be sure. So do you think I could take comfort in knowing that part of my tongue did not come back with anything in my pet/ct scan seeing as these symptoms appeared prior to the scan itself?
That sounds like a very logical conclusion. I always err on the side of caution and when in doubt....check it out.
Good luck!!!
My husband had radiation scatter from fillings that burned the side of his tongue. If you have metal fillings, and did not use a mouth guard, the recent problem could be something like that. I am glad that you are getting it checked out - better safe than sorry.
Good luck!
Maria
I have been finished surgery for 23 mos and rads for 20. In that time I've had 2 ulcerations on the opposite side of my original tumor. (My real tongue - not the rebuilt area. I have a crossbite and high arch so my tongue when swollen, even when not tends to rub on my teeth - hence causing irritation. My first ulceration took 2 months to heal. The second a month. With a normal person who's never had rash it would have taken a week. Compromised healing is very possible, and continued irritation to the area (acidic foods - rough foods) can all make that take even longer. The medication my dr gave me (oracort) said to apply it at bed time. I did this for two weeks with only minimal healing. What really solved the problem was going back to a soft bland diet, and rinsing and applying the med right after I'd eaten anything. Then after 2 weeks it was gone. The second ulcer I'm certain was directly related to rubbing on molars - I went to the dentist had the two culprits filed down to a softer rounded edge, and then did the same thing diet, and med wise. And the second one is now gone. Freaks me out every time - definitely have it checked and keep a close eye on it but its likely from rads etc...
Thanks Cheryl. good to hear about your ulcers...in a good way! I've been sifting through all this info and previous posts. Lol I almost feel like I know everyone a bit better as I spent hours going through old posts!
Hmmmmm lol not convinced as I have ear pains also, in had ear pain when I was initially diagnosed and a couple of other symptoms like feeling something caught in throat. My ENT doc wants to see me as biopsy will need to take place and doing this on Thursday. It's only been four months since treatment, and I only had a pet scan three weeks ago, there was mild uptake in my tonsil area but none in base of tongue! I guess hopefully if it's the worst case then it's early days.
My stage 1 tonsil odds not looking quite the same now of this turns out to be what I think it is.
Just reading up on treatment options, what chemo do they use for bot cancer?
I've already had radiotherapy so what next?
Why is this back so soon. Lol no one can probably answer that.. Just venting! X
Shell you are getting way ahead of yourself with worrying! Please relax. Being so nervous will only make things worse. The "what if's" really will make you feel so much worse about everything. Go get checked out so you can relax about your situation.
There isnt a chemo used just for BOT OC. Chemo by itself will not kill SCC OC. Its used with rads to boost its effectiveness. The only known cures for SCC OC are surgery, and radiation with or without chemo. There are several who have had rads more than once. One member has had it 3 times. Sure he has his issues with taking in so much radiation but he is still here and making the best out of his situation.
Recurrences will usually come back within the first year of a person being treated. All it takes is for just one teeny tiny cell that was missed to cause a recurrence. More patients dont have recurrences than do. Most of the members will return to their usual lives and rarely check in so it may appear that recurrence rates here are higher than they really are.
The ulcers could be anything, mucostis, thrush, herpes simplex, irritation from teeth, and as mentioned, have it checked out by an ENT. The tonsils are part up the lymph system, and are highly lymphatic, not to mention any scar tissue, inflammation from treatment, so they usually show uptake like some other organs do. My ENT took a biopsy of my tongue ulcer once, even though it was most likely from a cracked tooth rubbing against it, which it was, and continues to be a problem. Just to answer the BOT question, it's part of the Oropharyngeal or Oropharynx, along with tonsils, valeculla, soft palate, pharyngeal wall, uvula, and treatments are usually the same as with the tonsil, and radiation usually treats this entire area anyway, but already having radiation makes treatments more limited in the future, but not impossible. Most leukopatria (white, less invasive) and Erythroplakia (red) ulcers occur in the mouth, and if in the oropharynx it's on the soft palate. Good luck with everything.
Hi there- paul is right...
I would also like to say if you can see this ulceration - it's on your tongue not base of tongue... (if it's base of tongue - then it's likely not visible to the human eye as your base of tongue is down your throat)
Normally an ulceration on the tongue is NOT HPV related - if it is cancerous it is generally HPV- cancer. This being the case there are two possibilities - 1) highly unlikely - a second primary - not unheard of - but very RARE or 2) spread from tonsil to tongue... Truthfully this is also highly unlikely - as normally from tonsil, you would get nodal involvement and possible base of tongue - someone will correct me if I am wrong here ... but to me that sounds rare as well.
So chances are good though not definite - that it's just an ulceration.
Ear pain? BIG TIME if there is an ulcer on your tongue. The tongue is very nervy... if the ulceration is deep enough and irritated enough it can cause ear pain. I know this from first hand experience.
Also Ear pain can be unrelated - I have noticed that my ear gets sore occasionally - why? every since my surgery/radiation I am rewired in there... So when I drink I some times get fluid in my ear canal... lucky ME! it's also a sinus issue...
Finally trouble swallowing... not unusual. Radiation not only causes ulcerations, inflammations, etc... it also causes fibrosis...and thinning of tissue. So your swallowing may feel tightened and difficult.
Finally - someone else replying said it best... chemo is not a cure. Likely if there is an issue / tumor, they may remove it surgically (particularly if it is on the oral tongue and visible) or they may do another round of rads/and chemo... which would be cisplatin or carboplatin.
hugs and best of luck and hopefully it's just a nasty ulcer.
Thank you all for your answers! I read them last night and felt such a huge sense of relief and got the first good nights sleep since I started worrying about all of this.
Well I went to the ENT today. He took a biopsy as I expected but the look of horror on his face when I mentioned ear pain! He said well that actually is a concern and whenever we hear that we have took take it seriously. So he said come back in a week, if results are normal then he will have to do an investigation under anesthesia. If results come back pear shaped then off to Sydney for aggressive surgery. Hmmm I presume neck resection and or tongue if it's included. I think he is thinking as my pet wasn't clear there may be some residual disease. He then counted the number of months on his hand and said well it'd be about the right amount of time for it to show symptoms if it were residual disease. So where does this leave me lol is it reaccurence, same initial cancer which was very quite slow growing or a new primary if in tongue only.
So glad you got checked out by your doctor! They sound like they are top notch by not dismissing your symptoms.
Sorry Shell, but that last question is not something we can not answer. Your doc is doing the right thing to check you out. Thru testing he will determine whats going on. Try to have patience, keep yourself busy and think positive.
Best wishes!!!!
Shell,
The stance we take on the forums is that it's NOT cancer until a biopsy confirms it. It's tough to wait for results, however that's what you'll have to do. Try to get it out of your mind and just live in the moment, and at the moment you have nothing confirming disease right? Hard to do that but it's necessary to keep your sanity, trust me I lost some of mine by not living like that.
Keep your chin up!
Eric
Thanks Eric! We will wait and see but I am unfortunately expecting the worse. Results this week for biopsy. Does anyone know what causes the symptom trouble swallowing? Is it tumor growth or is it interruption of nerves. Lol yes I am still worrying! .....
She'll,
First, I am sorry everyone here calmed you down long enough for your doctor to totally freak you out. One of the grounding forces in our lives besides each other of course, is the calming influence of our docs. They tend to remind us that the million things our minds conjure up put so much stress on us. Disregard the months counted off, the additional scary comments and all that. Until they can prove it, worry not because until that moment you don't have cancer. Don't hurry the worry please. If it is...it will be known in due time. You are doing all you can and worry does not help.
I have had swallow problems for 9 1 1/2 years and just roll with it. I cough up a mouthful of goo that started at every 15 minutes and is now every 15 seconds. I have lumps, bumps, swellings and all that goes with this but refuse to accept anything unless they can prove it.
Enjoy every second right now. Your life has changed for good once you get that life shaking diagnosis we all have. It may continue to change forever or it may stabilize. Enjoy the moment and MAKE THE MEMORIES. Some day will come for all of us when that is what carries us through the toughest of times.
Get with a speech pathologist and get some swallowing recommendations. That is what they do.
Best wishes for the best possible course of action for you and your medical team. Enjoy life today. The rest will sort out.
Ed
Biopsy is benign yayyyyyyy. Still have to have my examination under anesthetic but halfway there so all good.
My results may have been a little too hasty. Saw him today and said it can either be post radio therapy changes or cancer recurrence. Scheduled for bigger biopsy under anesthetic next Tuesday then results following Tuesday after that. I'm feeling positive though as I'm exhausted thinking about the bad stuff. If it is, well then it s lol what a bloody rollers coaster. Hold on!!
Oh and he said its not an ulcer it's what's called a thickening. It's clost to the base of my tongue. Lol just in case anyone wanted to know the technical stuff
Fingers crossed it's nothing but thickening. hugs~