So, I have just been diagnosed with oral cancer. A spot on my tongue that's been there for a long time, became two spots on my tongue. After a long wait, I finally had them biopsied and they are cancer.
It never, ever occurred to me that I would get oral cancer. Don't smoke, rarely drink, just don't have the risk factors. And, who hears about oral cancer anyway? Breast cancer, cervical cancer, but oral cancer? I assumed that unless you weren't 80 and a lifelong smoker, oral cancer wouldn't be an issue.
Imagine my surprise when my Dentist freaked out about these spots, or the 'tongue on fire' after the biopsy.
I am waiting to have a CT scan done to find out whether it is moved into the lymph nodes. And, have consented for a tongue resection - removal of what I consider a good size chunk of tongue.
When talking to the Doctors, the tongue resection seemed the best course, but now I wonder if I should have looked at options that would preserve my tongue? Radiation instead?
I don't know, all I do know is my head is spinning.
Welcome to OCF, lwp. It is both a sad and happy event. Sad you got a cancer diagnosis, happy you found OCF so early. There is tremendous information here. Start reading all you can. Find out if you are HPV 16+ as treatments are much better at slaying the beast. Also fill out your signature so we can read your full diagnosis and where you are in the process.
Since you are in the early days, work hard at getting to a comprehensive cancer center (CCC) or minimally ensuring your case is managed by a team approach. Lining up a second opinion is also a wise option.
Stay close here, ask plenty of questions as there are many who have been through this and can offer first hand tips.
Good luck,
Don
Hi there I would definitely go to a CCC for treatment - that's important - but your dr is right in track with treatment for this particular type of cancer. Firstly - hopefully it's an ENT with a strong background in dealing with tongue/oral cancer (preferable one wh deals exclusively in it ) secondly have they mentioned a neck dissection? This is often part of the treatment for this cancer - even if your nodes come back clean on a scan - microscopic cancer can be there and undetected.
There are different kinds of oral cancer. Usually oral tongue is NOT HPV positive - and it treated first with surgery then depending on the pathology possibly radiation and chemo. HPV + cancers respond more readily to rads and chemo so they are often the first treatment offered (unless it's found in the tonsils).
Compared to each other believe it or not the surgery while daunting is way les disruptive and catastrophic that rads and chemo. Hugs and welcome
Good morning LWP - Yes, I too welcome you to the family. Right here is where you will get the best information possible for fighting this beast as well as keeping your sanity while doing so.
The shock and confusion you felt on initial diagnosis is the same all of us felt. Unless you already knew someone who had oral cancer chances are you knew nothing about it beforehand. That feeling of being hit hard in the face upon diagnosis, we felt too. Fortunately, and like you, we found the forum and immediately started benefitting from the warmth and support that exists here.
You have a steep learning curve to negotiate over the next couple of weeks before treatment begins. Go to the OCF website and start reading all the pertinent literature there on diagnosis, treatment and any other area you feel you need to know. Get a spiral notebook because reading that stuff is going to generate a thousand questions you will want answered; questions for your doctors (surgeons, radiation oncologists, medical oncologists (chemo) and question you want to ask here on the forum). The next week or two will be a busy time for you, but by its end you will start to get a handle on what's happening.
Only other piece of advice I will give right now is to try to not overly worry about this stuff. What form of cancer you have, what caused it, who you got it from (if it's HPV-16), how hard is the treatment, will I have to stop working, etc. Worrying about those things won't help anything, all they will succeed in doing is keeping you awake at night, unable to sleep.
Instead, spend your time in more productive ways; learning about the beast from the website and forum, reading a good book, watching a good movie, visiting with friends and family. Start eating now; eat a lot, all the good things, the fattening things, the tasty things. You are going to lose some weight during treatment, so it won't hurt will help to have some extra weight before you start.
Get started learning now, come back to the forum when you have some questions or need some reassurance that you are in fact going to be okay throughout this ordeal. We got through it, you will too.
Tony
LWP, welcome to OCF! Best thing you can do for yourself is to find the very best medical team available to you and go with it. At a comprehensive cancer center (CCC) they use a team based approach where all the specialists get together and discuss each case individually and then make a treatment plan. Once you choose your team and plan then you must put your faith in them and try your very best not to second guess your choice.
There are quiet a few members who are like you... no risk factors. Yours also could be HPV+. Only thru tissue sampling with the biopsied tissue will you know if its HPV or not. Regardless of the cause, treatment at this time would be the same.
At this time you should be doing a few things. Read and educate yourself about your illness. There are thousands of posts right ehre on the forum, and dont forget about the main OCF pages too. Eat everything! Dont be concerned about gaining a few pounds right now just eat all your favorites, even desserts. Your treatments will likely impact your ability to eat and its terrible having cravings while in the middle of treatment and you are unable to eat what you want for possibly a few days to several weeks, maybe months.
We are in your corner so stop by often to read, update and even to vent. We are here for you. Best wishes with everything!
Hi all,
Thanks for the warm welcome. I'm in Canada, and am fortunate that I live in Ottawa which has a really great cancer clinic (CCC I think is the acronym you guys are using). Downside for me is that my mom passed away after a two year war with lung cancer - so sitting in the same waiting room was hard, and that I'll spend more time there isn't that enjoyable.
My hope is that this has not spread to the lymph nodes, but reading some of what is posted on the boards is making me concerned about not going ahead with a neck dissection and removing them now, since I know that the cancer has been there for a while.
The oncologist did mention the possibility of a neck dissection, but said that they generally do it, even if the CT scan is normal, if the area is larger than 4cm and mine is 3cm (sorry for the metric my American friends...). Again, awaiting the CT scan, but the hope is that this is a T1M0N0, which is, of course, my hope as well.
Plus, even though an oral surgeon 'tried' to remove the tumours on Jan. 27th, one has come right back with a vengeance. I wonder if the surgery 'stirred' up the pot, and I wonder what part stress has to play in getting cancer.
I have to be honest, the more I read, the more freaked out I get. And, the HPV issue has not been mentioned by anyone to me, something to put in my book of questions!
Gosh, I'm sorry, I'm not even sure this was a coherent reply... Just a note to say thanks for the kind words, and good to see so many survivors out there.
LWP - you've gotten some great advice from some of our most knowledgeable family members (of which you are one now as well). As others have said, there's not much that can prepare one for hearing a diagnosis of cancer. But you sound to be in a good place both mentally and with respect to your medical team.
Please keep us posted and keep asking questions. We're all here for you 100%, inches or centimeters!
Courage.
LWP - everything in your post sounds just fine. We were all freaked out at diagnosis too, so we will cut you some slack. As David said, you seem to be handling this pretty well, and better than some who have come before you.
As for neck dissection; I've heard that microscopic cancer can occur in the lymph nodes which may not be picked up on a CT scan. This is why they are considering dissection with a negative CT result. If they recommend dissection, flow with it, trust your doctors to know what they are doing.
A CCC is a comprehensive cancer center. All cancer centers are not CCC's. There are only about 20 CCC's in the U.S. but they are the absolute best in the country, the world renowned hospitals, with names like Mayo, Sloan-Kettering, MD Anderson. They have the best doctors and the most experience with each form of cancer. All that experience really does make a difference. I know Canada has some good cancer centers. Our Canadian members will point out who they are.
Did your doctor "stir the pot" when trying to remove the tumor before? Believe it or not, that is a fairly common phrase, even my RO said treatment (in your case surgery) made the tumor "angry".
You are still in the earliest phase of your learning curve about cancer. I expect everything you read that sounds bad, you are thinking oh I hope that doesn't happen to me, or what will I do if it does happen to me. In the beginning most new members think this way. The trick is to get beyond that, to get to where you can read all this stuff and learn from it as if it was happening to someone ELSE. My first week of reading was pretty freaky
too, but then it smoothed out after that. Most of that bad stuff didn't happen to me. My journey through treatment was pretty smooth.
Will your journey also be smooth, who knows, everyone is different (you will hear that over and over, ad nauseum). But, it's true, because we are all different. What happens to me may or may not happen to you.
I think one of the things that helped me most during my first month was getting on the forum and talking to other new members. We kind of reassured each other that we were not alone and that we would all get through this together.
None of us knew much about cancer, so we had to depend on the old-timer members for that, but it was comforting to have a group of people just like us to go through this journey with.
Discuss with your doctor the HPV-16 issue. If you have more surgery ask that the tumor tissue be sent to pathology for HPV examination. The doctor will probably do it anyway, as he will likely want to know. While HPV-16 is an STD, it being the cause of your cancer is a good thing because these cancers respond to treatment better and have higher survival rates.
Keep reading and asking questions, you're doing just fine. We are here with you every step of the way.
Tony
Hi there -
again. I'm in Toronto - I was treated at princess Margaret hospital by one of the top ENTs in the country - my tumor was 2.4 cm he removed 40 nodes even though my scans - 2 of them - were clear. It was a good call. I felt one pop up between the biopsy and surgery and one of the scans was after this thing popped up, anyway it came back cancerous and leaking into the surrounding tissue - which is what the pathology said.
Anyway as I said previously this particular cancer is treated with a resection, dissection and hen follow up rads and chemo if necessary.
Don't get freaked get educated, this will allow you to advocate for yourself.
I hear you about your mom, I lost mine to lung cancer as well, got through my own treatment then spent the last 4 months taking my father in law for treatments at Pmh for esophageal cancer ..
hugs - you will get through this.
LWP - You WILL get through this. Everybody goes through the "freaked out" stage. It is important to inform yourself as much as you can through what you learn here or on the main pages of OCF. Be sure and write down all your questions for the doctors at your next visit and bring someone with you if you can so that you can check back with each other on what was said. When the negative thoughts start to attack your brain, just give them a time limit - like 2 minutes or less and then switch to all the things that can go Right instead of wrong. Keeping busy is very helpful, deep breathing and hanging on to the positives in your experience. Come here often. When my son was diagnosed with Oral Cancer with no known risk factors, I was a basket case of frantic worry but we both survived beautifully and he's been cancer free 7+ years!
It seems like most everyone has the neck dissection at the outset. Cheryld - interested in the decision for the neck dissection in Toronto. I'm going to talk to the Doctor about it, if I can ever get the CT scan booked. I'm still waiting for a date for it.
I'll report more when I have more to say. Thanks all for the kind words.
Lisa
Quick update from Canada - Had a CT scan of my neck which showed three larger nodes - one over 1.6cm and the other two just under.
So, original partial glossectomy was cancelled and replaced with partial glossectomy and neck dissection for March 25, 2014. I'm just as happy to have the potentially impacted lymph nodes out, but ...
I also have TMD - basically a locking and unhappy jaw - as well as compressed neck disks due to a couple of car accidents/whiplashes. Has anyone had similar type issues, how was recovery from surgery?
I also find it very hard to know what to say to folks at work - if the nodes are negative, then I could be back to work soon enough. If they are positive, that's another kettle of fish. Then, I also have had a persistent cough, and just had a chest CT to make sure there is nothing involved in my chest. That would be a real sucker punch.
Started to see a naturpath - and he suggested that cranberry juice and cruciferous veggies (broccoli/cauliflower/cabbage) would be good additions to my diet as they have cancer preventative properties.
Just hanging out and waiting for now....
Donna from Winnipeg here. Good luck with your surgery on Tuesday. It sounds like they now have a good plan and are moving forward to make sure that this beast is eradicated. I had the partial glossectomy and neck dissection - twice - once in 2004 and once in 2007.
The nodes COULD be larger due to their general irritation, but in my experience they are most likely a victim of the cancer as well. For me, the neck dissection was a non-issue. Sort of like adding the superwax to your car wash - an extra but didn't change the actual car wash that much!
I would expect that once the pathology is back that you will be headed for radiation and/or chemo. The chemo given is the type that boosts the effectiveness of the radiation and is not the type of chemo where you lose your hair. Depending on where the radiation beams are aimed, that is where you may find more issues with your jaw and your neck - but those effects likely won't show up for years. They can be debilitating when they do show up - but you have to keep looking at the 'big picture' when dealing with all of this.
My doctors goal is and was to get rid of the cancer and effect a cure. That was the big picture.
Everything else that happens along the way is seen as collateral damage and I do try to look at it from their perspective. I am still here 10 years past my initial diagnosis, and 6 years past the end of treatment from my recurrence, so they do appear to have had the right approach!!
Wishing you well. I will be thinking of you on the 25th. Sending you good vibes for a smooth recovery and early pathology from the surgery! That will be what drives the next section of your treatment so you will want to hear that right away. Hugs.
Donna
Hi there - I am going ot agree with pandora, I would be very surprised if your nodes are not cancerous. Anything is possible but ... Realistically it's highly likely. I'm sorry I didn't see your previous message until now. I usually stop by daily somehow I missed it. My drs. Initial decision with regards to the neck dissection is his experience with this cancer (this is all he does - he is the chief of the head and neck clinic at ohm, teaches at UofT, and trains international fellows in his surgical technique - he was featured in macleans magazine - as number 1 - under the top ten drs. Drs. go to when sick). He knows that not everything shows up on a scan and in his experience over the years he's been treating this cancer has been that leaving the nodes behind tends to lead to a recurrence. Period. The neck dissection really has the least amount of impact. Most of the range of motion in the arm, and shoulder will return with proper therapy over time, as long as you are diligent and determined. (They cut your neck muscles and nerves) ultimately you will have a wonky shoulder - numbness and swelling that will subside over time. Three years out the swelling is a non issue for me, my shoulder is about 98-99 % normal. Mostly my complaint would be a tiny amount of weakness and tiredness when say.. Doing aggressive yoga... Day to day it is not noticeable and truthfully once I get back to the gym (I've been lazy) I will sort it out. From a pain stand point you are numb post op (and you'll look scary for a bit - looked like I went a few laborious rounds with a Mack truck post op) numbness I would say is semi permanent. Nerves do eventually regenerate but it takes a few years and can feel crampy but for the most part I am pain free. Others have a bit more pain, but that really is dependent on the surgeon, and where they cut and the patient and how they deal with pain. The numbness does minimize though, the area that is numb gets much smaller, and I've been stiff, but that slowly loosens up with massage therapy and stretching.
With regards to your individual problems tmj and the spinal issues, I'm not sure how the disks will be impacted - I'd say not much just based on the location of the surgery, tmj will likely not be a problem for the dissection but may for the tongue surgery - I would ask if they intend to split your jaw. So glad they are following through with the neck dissection but not glad that you appear to have nodes involved. I would say that at this point you should be facing rads and chemo post op. - were it me, I'd be yelling - bring it on.
Read up on the surgery - know what to expect post op. If you have any questions feel free to pm me. Hugs and best of luck.
Thanks guys - I'll be glad to have this surgery out of the way, and it sounds like people are up and about shortly thereafter, which is great news.
I'm getting pretty antsy waiting on the surgery though, am not a patient person by nature, so waiting is not my forte. And, this is kinda torture - wait for results, wait for dates, wait for surgery....
I'll let you know how it goes when I'm back home... again, thanks for your kind words and also for sharing your experiences... it makes a difference...
Bring something to write on or speak with... Ipad with a speech program? Pen and paper? Something - I'm not certain but depending on how involved the surgery is - they may trache you - if they do it will be 2-3 days without speech - they have two types of traches... Mine was strictly for breathing and allowed no talking I think that is to prevent you from damaging your tongue and any graft sites. Then two days after surgery they switched to one that allowed me to talk and breathe through it - then day three they removed it - the trache was the one thing I hated! Are they grafting you? Actually how large is the tumor? And have they stages it? This is important to know... That and the differentiation, it will help give you some idea if your are going to be facing radiation and chemo afterwards and how aggressive they should be with treating you.
I was the same way - the minute I found out about it I wanted it OUT... Hugs and good luck tomorrow
Best of luck with your surgery.
Ask for a possey muir type trach to be used IF you get one. This will allow you to still be able to talk. I had that type and it worked wonderfully!
Make sure you tell your docs to keep your pain at a minimum. Dont ever suffer in pain, speak up (or write it) and tell the nurses. Dont be afraid to call them, they are there for you. If possible take someone with you to stay as much as possible (especially if you arent able to speak). Everyone should have an advocate there to look out for them.
Please check in when you can. We are all in your corner cheering you on!!!
The waiting is driving me mad!!
So the tumour(s) are not large - but there are two of them. One is about 2cm and the other 1.5cm. Both were removed by the oral surgeon doing the biopsy and number one tumour has come back. While waiting for the CTs etc, it has regrown to about 1.5cm. But the surgeon will treat the entire area as one tumour of approximately 3.5cm and then cut a healthy margin around it. But I will not need a graft, and it won't be past the midline so I'm taking that as very good.
They are both on the right lateral side of my tongue...
They also said that I wouldn't have a trach - I think in comparison to what some of you have have been through, this is peanuts... I wish I could feel like it was peanuts though...
Thanks for the well wishes...
Lisa, sorry I didn't get to your post earlier. I will be keeping you in my thoughts tomorrow. My husband is being treated at Princess Margaret Hospital in Toronto as well. They are truly at the cutting edge. If you indeed have to have chemo radiation after surgery, make sure to talk to your RO about the naturopathic remedies you are taking. It is something to do with the particulates. But hopefully you won't have to take that step. All the best tomorrow.
Wow you're having a lot of tongue removed I'm very surprised your not getting a graft. It will make for a shorter surgery though. My tumor was 2.4 cm x 1.4. And it was grafted. I know it sounds small but in terms of a tongue... It's not - my dr removed 1/3 of my tongue and the left floor of my mouth to be on the safe side. bless him. I was going to say great on the diet. Eating healthfully can only help but as Gloria says - make sure if you have to have rads and chemo - they aware of any supplements and vitamins you are taking. By the rate of re growth I would say your cancer is poorly differentiated - push push push - ideally (though it's not fun) I would be hoping for chemo. And rads. Hugs and best of luck!
Gloria - I just found that quote (she stood in the storm) and used in on my blog, with a picture of the tree and lake where my Mom's ashes (and spirit) are ...
reading your signature just sent chills down my spine... and made me feel very comforted.
thank you.
Sorry, Lisa. In my last post I meant to say talk to your RO about the naturopathic products you're taking because of the free radicals (not particulates). I don't know what I was thinking.
Hi all,
So the partial glossectomy and selection neck dissection were done on March 25th and surgery went well. Will get the pathology results on April 10th and have been home since March 28th. Although I went back in yesterday to see if the white crud that was on my tongue where the sutures were is normal - turns out it is... And, seems like I'm a bit of a worrier now.
The surgery went well - I had a lot of nausea post-op but that finally subsided once I dialled back on the pain meds, and other than a very stiff neck, and the endurance of a day old, am not feeling too bad.
The sutures are coming out on Wednesday - am finding the recommended neck stretches uncomfortable as I feel like I'm going to pop the sutures. Actually had a dream that my head fell off...
Tried semi-solid food today but that didn't work out so well - yogurt and protein shakes are fine though for now.
The surgeon was happy that we went ahead and did the neck dissection as I had 'a lot' of lymph nodes and the needle biopsy wouldn't have told us all we need to know. And, she was pleased with the tongue and they took an overly generous margin so that's good. Other than than the white stuff, it seems to be healing up okay.
I'm finding friend/family's reactions to me a bit hard - some just started to cry right away - others do a huge double take.
Thanks
As for others unexpected double take reaction to your new normal, try this.
We have one member from Canada (it might be CherylD) who adopted a really dry sense of humor in response to other peoples reaction to her neck surgery scar. When people would ask what happened, she had a couple of standard remarks; one was "shark attack" and the other was "husband tried to slit my throat".
I'm hoping you don't find that offensive, but I laughed so hard I about p***d my pants. Sometimes humor is the best therapy.
Tony
I joke about my neck too. Some people are dumb and ignorant so when they ask me what happened I make something different up each time. The last time I said it happened when I went to prison and had a fight with a rival gang member. The new normal is tough..but laughing helps
I am glad your surgery went well. I lived on liquids for a few weeks but before I knew it I was back to eating taco Bell
People's insensitivity can be irksome. Then again, I am still convinced that unless a person has been down that road (as a patient or as a caregiver), it is extremely hard for him to truly understand the impact of the diagnosis and treatment. I adopt a very matter-of-fact tone when people ask me about John's condition. I lay out the facts in a calm and even tone. People usually take it quite well.
Hi there, thanks for the replies.
I love the shark attack one, may have to use it!
And, now, I have another question. It looks to me like my sutures on my tongue have popped. The Dr. said they would hold for about a month, but I now have a hole on the side of my tongue, that was formally sutured shut. Worthy of calling the surgeon about, or am I a hypochondriac?
Call the surgeon. Just to be on the safe side. It will heal but it might be very sensitive and may need to be restitched. Or not.
good luck
Yes, call your doc and have them take a look at it. Its always better to be on the safe side and get checked than have bigger issues and you are sorry later.
Good luck!!!
Hello LWP,
My name is kimberly, I am an year older than you;) I have tongue cancer and I must get a cat scan Thursday and then find out the news
I posted on here just a few days ago. I am also am animal lover! I have two dogs, a husband and a teen daughter.
May I ask how long you waited? Why do you day you waited long? I noticed a lump on my tongue around mid feb but took 5 or 6 weeks to get it checked out.
I don't smoke or drink. Try to live a healthy lifestyle, so like you I was very shocked too.
How long is too long? I can't seem to find that out;(
Anyhow, hope this finds you well. I am new too. I posted under,crying all the time/ newly diagnosed.
Take care;)
Kimberly
Hi Kimberly... Sorry to take so long to get back to you. I've been recovering from the surgery and not doing so much. I have a hubby, two teenage girls, a dog, cat and two horses!
The way it worked for me was the Doctor booked the surgery presuming that the CT would be negative, and then about 10 days after the CT scan, she called to tell me that the lymph nodes were larger than they should be. They weren't conclusive, but enough for her to recommend the neck dissection. So, I ended up with a different surgery date, a couple of weeks later.
It feels very much like I am just a little cog in a machine - found out from my GP that the CT scan on my chest was clear (THANK GOD!) but tomorrow I will find out the pathology results from the surgery.
I know what you mean, it is such a huge sucker punch to deal with. So out of the blue and unexpected... and don't feel bad about the 5-6 weeks, I had something on my tongue for a freakin' YEAR! And, like an idiot, just figured it was stress related and ignored it.
Fingers crossed that it's just localized to your tongue and it'll be a small surgery and you'll be done!
Lisa
Kimberly... how long is too long is a relative question...
It really depends on you... on an anatomical level.
I had my issue for over two years. I had seen my GP, 2 dentists, and an ENT - and had a negative biopsy in the middle of all of it.
I had had a sore tongue for a bit - as you may know - I had the molar that was irritating my tongue filed repeatedly and was finally referred to an ENT and had a NEGATIVE BIOPSY - a year before I was actually diagnosed.
My second biopsy noted well differentiated SCC (it is the aggressiveness that makes a difference) I have been a vegetarian for years, worked out daily and did yoga, no smoking no drinking no drugs etc... (I was a sugarholic though!!! and wasn't the best when it came to healthy eating - I liked processed foods a little too much - and organic? well.. not a priority... Food is food right? NOT!!!) Anyway, I contribute my fairly healthy lifestyle (aka - REALLY GOOD IMMUNE SYSTEM) with keeping the whole situation under control for as long as it did.
Had I had other health concerns things might not have been as doable (treatment wise)
My initial scans showed no spread. Once they biopsied me within 3 weeks I had a node pop up and it wasn't a small guy (1.4 cm)
The pathology reports after my surgery were moderately differentiated on the node.
Poorly differentiated is harder to catch but easier to kill (poor cell structure - more susceptible to damage) but it can be highly aggressive and spreads fast and to distant areas more quickly. This is why i always say... time is of the essence no matter what.
and also why a T1 tumor can be life threatening in some ways more so than a T3... It all depends on the aggressiveness, and you. Daily habits? Overall health? Stress? and your metabolism.
I am not sure why but the younger people tend to have a more aggressive form. Maybe because they are more metabolic?
So really some people can have this for years and walk away, and some can have it for months and not.
Hugs. And try not to worry... both of you. Lisa - so glad you are healing.