Noob with floor of mouth cancer
Hello. I was just diagnosed with floor of mouth cancer in the first week of January. It is on the right side of my mouth between my tongue and teeth.
I have had at least 6 biopsies in the last 15 or so years-2 of them under general anesthesia-on the right side of my tongue adjacent to the growth on the floor of my mouth. At first it was believed to be oral lichen planus and later just run of the mill leukoplakia and recurring dysplasia. I am seeing a specialist in a few weeks. I have had a CT scan. It has not spread to jawbone or lymph glands yet.
My mouth has been bothering me off and on for years. I just lived with it and dumped a ittle lidocaine on there when it acted up. Watched what I ate when necessary. Around Christmas it started bothering me. I thought my mouth was just irritated from eating a bunch of turtle candies. I went to brush and floss one night and blasted out a bunch of blood when I was using my waterpik. Thought maybe I had small abcess or something from food stuck between my teeth. I brush at least 2X daily and waterpik at night. Ignore for a few days.
Pain gets worse. Sore throat. Think I can feel some tonsillitis brewing. Schedule appointment with my ENT guy. ENT guy looks at me, says straight up he thinks it's cancer this time and does biopsy after numbing me thoroughly. He digs around in there and tears 3 or 4 tiny little pieces of the offending tissue out and sends me out to get the CT scan and schedule my appointment with the specialist.
It didn't hurt that bad until I got the biopsy. Time went by and the pain is getting worse and referring all over the place. I'm eating NSAIDS 24/7 and they are becoming ineffective. Doctor put me on keterolac but taking gabapentin and saving the last few keterolac so I can be alert when I drive my husband to chemo. (I am having trouble with the insurance company. May have to go out of pocket but ENT office is trying to push an authorization through.) He has lung cancer that came back after 11 years.
Is this much mouth pain normal? It is giving me severe goldfish brain(remember Dory in Finding Nemo?)and I have trouble talking finding words and the other day I couldn't figure out how to operate the windshield wipers in my car for several minutes I was trying to shut them off. I was poking around in my mouth before I went to the ENT and it feels like there is a crater right under my teeth in addition to the ulcerated growth on the floor of my mouth. The pain suddenly got a lot worse today and I'm wondering if the stuff is boring its way into my jawbone now or if the roots of my teeth are being eaten up or something. I am starting to feel constant nagging pain in the soft tissue of my jaw above my neck and constant earache I feel like it's going into a bunch of nerves.
I'm not really scared I just don't want to hurt anymore I want to hurry up and see the specialist and do whatever I have to do to beat this.
I'm drinking essiac tea at night for the last few weeks and I'm going to start flaxseed and flaxseed oil.
I haven't even started any treatment yet and I already don't want to eat. I know this isn't good. Maybe I need to go to the dentist. I was going to wait until I see the specialist. Who knows? Maybe by then they are going to have to take out that piece of jaw with the hole in the gum under the teeth?
I'm just trying to find out what to expect so I can cope with it all better, maintain a .positive attitude and keep my family from worrying so much and prepare us all for what's going to happen.
If you made it this far, thank you for reading.
Comments
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Hello And Welcome
Although I am sure you would rather not be here. Ok, you are upset and that is understandable we know what it is like. Stay as calm as possible you are OK mentally but this has you upset, you don't have a goldfish brain. When you go to any doctor take someone else along to have 2 sets of ears and take a notepad to write things down. I may have missed it but did you officially get a biopsy result that is positive for cancer and if so what kind? I have had biopsies and you are sore for several days or more afterward but I never had severe pain. Call your doctor and let him know what is going on and that things are changing and he should want to see you earlier and will get you a prescription for stronger pain meds in the meantime. I can tell this is weighing heavy on you and especially by the 6th paragraph don't let your mind wander thinking all sorts of scenarios just stay focused on actual tested and results and lean on your medical team for any kind of help and support you need. Also are there any other family members or friends besides your husband that can help you through this. When I had cancer I was assigned a nurse navigator to help me through the many things to consider and think about and you could call them anytime for help.
Here is the usual chain of events--
You think something is not right or normal and you go to your family doctor and he may give antibiotics and it it doesn't clear up in a coup[le weeks he would send you to an ENT.
Ent would check and scope you and if he found anything unusual would order a CT Scan with dye.
If the CT Scan showed anything questionable or possible cancer they would next biopsy it.
If it is in fact cancer they would then have you get a PET scan which is a whole body scan to see if cancer is anywhere else in your body.
If not then you would have a treatment plan worked up by your team to treat the cancer you have.
The folks on this forum can't tell you what to expect until you give us more details such as type of cancer, location of cancer, stage of cancer, number and strength of radiation treatments you will be receiving, number and type of chemo treatments you will be receiving, will you be getting any surgery etc.
I hope some of what I have written here help in some small way and if you have more questions or find out about your diagnosis and treatments please post back and let us know-Wishing you the Best-Take Care-God Bless-Russ
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I was diagnosed with cancer
I was diagnosed with cancer based on the biopsy that my ENT took. I already had my CT scan with contrast and based on that the ENT office is telling me it didn't go into the lymph nodes or my jawbone.
I did wonder why no PET scan. My ENT referred me to a specialist because of where the cancer is located. Maybe the specialist will do a PET scan.(My ENT doesn't do the surgery where they cut the jaw open and all of it). I don't see the specialist yet for a couple weeks. I also can't have an MRI because I have titanium implants in my blood veins that obscure the view. Any MRI pictures will just be a black blank space there.
I don't know much about it at all right now but after I see the specialist should know a lot more. Hopefully.
I am not expecting anyone to tell me exactly what to expect. The only reason I'm here is to try and brace myself though and be better informed for my own sake and that of my family by reading the experiences of others.
It was probably too long of a post-sorry. I tend to get lost in the weeds.
. I'm doing it again...I don't recall the ENT folks telling me exactly what kind of cancer cells I have. All I remember is floor of my mouth, 2 cm x 2 cm, no lymph nodes no jawbone.
My main question is really....
Is it normal for oral cancer to cause this much pain? I know there are some nerves in this area that refer all over the p!ace
I think the ENT finally got the approval they were seeking from the insurance company to give me more pain meds because the pharmacy said they would finally be ready for pickup tomorrow.
I'm not getting why the pain meds are so hard to get. They aren't narcotics but I guess the ways of the insurance company are mysterious... The pharmacist told me the insurance company was only authorizing payment for half a pill a day but this particular pharmacy is kind of flaky to begin with. Maybe they got the kind of keterolac mixed up. AFAIK there are drops for the eye, nasal spray for migraines and pills for pain relief. (I found out later oral keterolac should only be taken for 5 days or less so ENT guy is going to write me some Norco.)
I am looking forward to finding out what the treatment plan is. My husband has lung cancer that came back after 11 or so years. He said at first it's kind of slow because all the people are gathering information and trying to figure out what to do. He got his diagnosis a day or two before Thanksgiving and didn't get radiation and chemo until January the first time around. In the meantime he was treated for pneumonia couple times and had lasersurgery to open his lungs a bit. He says it starts slow and when the treatment plan comes together it becomes a whirlwind of activity.
I saw the ENT on the 1/7 and got my cancer diagnosis on 1/11. I'm not expecting much to happen for at least a month or two.
I'm more worried for my family than me. My husband is on oxygen and needs some help. My daughter helps a lot, my mom offered to help my son will help and his daughter can drive him to chemo a couple times a month... The man isn't helpless-he works from home-he just has good and bad days whennhe doesn't breathe well and needs more help. My first thought was not omg what about me?! It was what about them? because people do count on me. I'm the one who takes care of everyone, fixes stuff, cleans and does yardwork and grocery shopping, cooks...
Off into the weeds again. Thank you for reading and responding. I have been reading these forums for years. Figured cancer would eventually invade after all these years of biopsies so arming myself with information. I won't panic unless they just give me morphine and send me home to die.
Right now I'm thinking Eddie Van Halen hung in here for 20 years-so can I. I will be almost 80 by then so....
Thank you again for reading and/or responding.
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Thanks For More Info
So you definitely have cancer.
You are very blessed the cancer has not gone to the jawbone or lymph nodes.
When we know more about your treatment we can guide you on what to expect somewhat but everyone’s different.
I would brace yourself with knowledge and confidence as you can do this and brace yourself for the worst and if it is easier that is great.
Cancer can be painful and for many they have it and never know it till they have an issue.
I am glad you are getting better pain meds as I have found with cancer they don’t hold back and don’t want you to suffer.
Your husband is correct things do start out slow and steady but once the treatment plan is laid and starts your days will be full of treatment and doctor appointments.
Sorry to hear your husband was free from cancer all that time and suddenly it came back on him. I would have figured he was in a no worry situation but you never know.
It is not entirely impossible you may have only surgery or only chemo and rads it will be interesting what they end up planning for your treatment. And if you feel uncomfortable with anything don’t be afraid to get a second opinion. And many on here recommend going to a major cancer center if you have the option.
If you have pain I would think they would not want to wait a month or two but get started sooner. Question them on the time frame and if you are concerned push them a little for sooner.
You have always helped everyone else but now you will need some help so don’t be afraid to ask and accept help when you need it to get you through this. This is not an easy task.
You can do this and you will be OK and folks on here are happy to astep up and help as they can.
Keep us updated on anything and when you get the treatment plans-Take Care-God Bless-Russ
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floor of mouth cancer 2015
Hi I was diagnosed with floor of mouth cancer in 2015, prostate cancer in 2017 . I was 57 at the time I notice a small bump size of a grain of rice under my tongue, i thought it was maybe an wart but I happen to have Dr app coming up that week and ahowed it to Dr. Dr didn't think it was cancer but ordered biopsy anyway and it came back positive for cancer. I had no pain at all but ENT recommended surgery, I had bi-latheral flap and lym removal, was cut almost from ear to ear . Been over 5 yrs and you cannot tell I was cut unless you look very closely, still no pain because it was caught very early. ENT released me last month because it's been ovr 5 yrs , but gave me the option to be seen in a year and I accepted it. My cancer was under my tongue to the left of the midline"the piece that holds tongue to floor of mouth". They cut the cancer out and then did the bi-latheral flap, and you cannot tell I had surgery. Now, prostate cancer had surgery Dec 2020 still recovering. Good luck and god bless
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Thank you for your responsescoop317 said:floor of mouth cancer 2015
Hi I was diagnosed with floor of mouth cancer in 2015, prostate cancer in 2017 . I was 57 at the time I notice a small bump size of a grain of rice under my tongue, i thought it was maybe an wart but I happen to have Dr app coming up that week and ahowed it to Dr. Dr didn't think it was cancer but ordered biopsy anyway and it came back positive for cancer. I had no pain at all but ENT recommended surgery, I had bi-latheral flap and lym removal, was cut almost from ear to ear . Been over 5 yrs and you cannot tell I was cut unless you look very closely, still no pain because it was caught very early. ENT released me last month because it's been ovr 5 yrs , but gave me the option to be seen in a year and I accepted it. My cancer was under my tongue to the left of the midline"the piece that holds tongue to floor of mouth". They cut the cancer out and then did the bi-latheral flap, and you cannot tell I had surgery. Now, prostate cancer had surgery Dec 2020 still recovering. Good luck and god bless
Thank you for your response scoop. My favorite part was where you said you can't tell the surgery was done! I'm ready to get on with it but having my head split open or cut ear to ear is a little daunting... I'm thankful my children are grown now and won't be too wrecked when they see me.
The silver lining of C19 restrictions is no visitors will see me at my worst. It was hard to see my husband having to deal with being weak as a kitten for a while at the worst of his cancer. I understood why he was and I didn't mind doing extra to help him by but my heart hurt for him. It's hard to face being dependent on others sometimes...
Was wondering... if they do say a flap from my forearm... will I still have functioning arms and hands to do gardening, sewing, canning, small repairs and whatnot?
I hope your recovery goes well. My uncle had prostate cancer and they were able to do those little tiny radioactive implants. He's been doing well for years now cancerwise, but his heart is a thorn in his side now.
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I am having a lot of pain and
I am having a lot of pain and some days it is harder to manage. Some things that help besides opiates... I'm going to concentrate on opiates now instead of aspirin type nsaids that thin the blood because I want to be ready when it's time for surgery. Back it up with tylenol and gabapentin instead of excedrin. Use the keterolac for busy driving days only. The keterolac is really good on pain relief without the dopy sleepiness of opiates. I only have one or two days a week that I have to go out of town. I try my darnedest not to leave the house!
I am having trouble finding a soft toothbrush and they are so big. I bought children's toothbrushes and it makes brushing my teeth so much nicer and it's easier to avoid the sore spots with a smaller one. I use children's toothpaste because it's milder. For mouthwash I am using warm water with a few drops of lavender oil and tea tree oil which are both slightly pain relieving.. Also doing the salt/baking soda mouth rinse that is very soothing.
Lidocaine is great when the pain gets really bad. I dab a bit in my ear and swish with about a pea sized amount in water.
I wear a balaclava to keep warm or if it gets awful I heat up a sock with rice in it in the microwave to put on my jaw, neck, ear or wherever it hurts. Chewing comes and goes. Some days it's unbearable and I just have soup. My favorite is Campbells Chicken Noodle with lots of butter and crackers and a small glass of milk. Potato soup is nice too. Ice cream. Jello. Smoothies. I have some small blenders so maybe I'll start pureeing stuff on the bad days.
Still trying to stay upbeat and busy. I just wanted to talk about things I'm doing or going through. Who knows? Maybe the information will help someone else. Only a couple of days before I see the specialist at the head and neck cancer center.
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Many Times
Just posting and talking through our situation, problems, and triumphs help us to get through each day and approach the next one with renewed confidence. Congrats on staying upbeat and busy. I am glad you posted and I am sure the info you shared will help someone. Wishing you the best-Take Care-God Bless-Russ
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I had a zoom meeting with my
I had a zoom meeting with my endocrinologist today. I have had hypothyroidism for many years. He dropped my dose down just a bit in case I have to do chemo. He said if my metabolism goes too fast might not get the maximum benefit from chemo. I am going to put him in the information loop with the head and neck center. It makes sense because this could affect or even invade my thyroid gland or the dosage on my meds might need adjusting. I am supposed to call him when I start treatment.
Yesterday my boy stopped to visit and helped check air and fluids in the cars and he and I and my daughter teamed up on the yard so I did his taxes for him today. Trying to get things done before I have to maybe take my little "vacation". Daughter and I worked on some sewing projects today and we had leftovers for dinner-lasagna and rotisserie chicken. I had potato soup, a banana flax smoothie, jello, chocolate pound cake and a few cookies. Sometimes chew them sometimes I dip them in coffee. I need to eat better or I'll get the beetus too.
I'll post an update after I see the specialist.
Later days.
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ozy,
I'm very glad to hear that your kids live close by (or your daughter maybe at home). A strong support system will help you get through the treatment process!
I'm also glad to hear that you're eating well. I always tell people to EAT EAT EAT - ALL of your favorites and LOTS of them.
(Treatment can affect ones taste and swallowing for a while. It's almost impossible to describe, until one has been there.)
The good news, is that it is all temporary!
I sincerely wish you the best possible outcome from your treatment - and I'm looking forward to hearing that you're done, and well on your way to recovery!
mg
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Sounds Likeozymandible said:I had a zoom meeting with my
I had a zoom meeting with my endocrinologist today. I have had hypothyroidism for many years. He dropped my dose down just a bit in case I have to do chemo. He said if my metabolism goes too fast might not get the maximum benefit from chemo. I am going to put him in the information loop with the head and neck center. It makes sense because this could affect or even invade my thyroid gland or the dosage on my meds might need adjusting. I am supposed to call him when I start treatment.
Yesterday my boy stopped to visit and helped check air and fluids in the cars and he and I and my daughter teamed up on the yard so I did his taxes for him today. Trying to get things done before I have to maybe take my little "vacation". Daughter and I worked on some sewing projects today and we had leftovers for dinner-lasagna and rotisserie chicken. I had potato soup, a banana flax smoothie, jello, chocolate pound cake and a few cookies. Sometimes chew them sometimes I dip them in coffee. I need to eat better or I'll get the beetus too.
I'll post an update after I see the specialist.
Later days.
Everything's going well for you and you have a very good endocrinologist and wants to stay on top of things for you. I have never heard of lowering thyroid medicine to get the maximum benefit of chemo treatment but new things and ideas are coming along all the time. Annnnnnd it looks like you had a great day with the family-wonderful. Best Wishes-Take Care-God Bless-Russ
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Thank you all.
Thank you all.
I saw the specialist at UCSF today. Because of my MRI problem-metal implants are occluding the view-he is doing a PET/CT with contrast combo and having pictures taken at smaller intervals. He said I might not have to have chemo or radiation, which was encouraging.
They are planning to remove three molars and replace the skin with a flap from my left forearm and I will be getting the neck dissection to remove the lymph glands. Surgery will probably be 8-10 hours. I will have a trach and a nasogastric feeding tube and be unable to eat by mouth for at least two weeks. I will be in the hospital for 10-11 days. He is shooting for a month from now.
Gotta get the car smogged and stock up on a few things. The kids know what the deal is they will be helping a lot. Of course while I'm in the hospital I will miss everyone terribly. Staying home all this time has brought us much closer. I'm kind of scared sometimes but it's gotta get done. Just joking around and cutting up with the kids and trying to stay busy. Might do some sewing and can some marmalade this weekend if I'm not hurting too bad.
My poor mom is worried. Hopefully by the time I'm in the hospital my boy will be with her. The people he and several others rent a house from are selling their house so he's going to rent a room from my mom. He will be able to help do things my husband and I won't be able to do-fixing stuff and whatnot-and just be there. She was widowed a while back and misses having someone to fuss over.
Thanks for reading.
Nite nite.
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Today was a really good day.
Today was a really good day. My daughter and I helped my son get things cleaned up for his move. We made a lot of progress today dumping old stuff and rearranging what was left to make room for my son at Mom's place. I wore myself out today but it was worth it spending time with everyone. I was able to eat a cheeseburger today which was really nice after just doing soft stuff for a while. I have good and bad days for eating.
The doctor from UCSF wrote me some gabapentin so I don't have to take my husband's. He was taking it for shingles that he got when chemo/immunity treatment started but that's been gone for a long time now.
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Breakfast was dinner rolls
Breakfast was dinner rolls cut into cubes, soaked in holladaise sauce with scrambled eggs on top.
Got the car smogged and bought groceries.
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Greatozymandible said:Breakfast was dinner rolls
Breakfast was dinner rolls cut into cubes, soaked in holladaise sauce with scrambled eggs on top.
Got the car smogged and bought groceries.
Got some food in ya and accomplished something today too. Congrats on keeping moving-Take Care-God Bless-Russ
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My daughter and I finally
My daughter and I finally canned up the marmalade yesterday. We did laundry and other odds and ends. Trying to finish a pile of face masks for my mom and my daughter.
Surgery will be in about three weeks. It is called "glossectomy with composite resection, floor of mouth, mandible, radical neck dissection(commando), tracheostomy right or left". Will have the NG feeding tube also. Hopefully the PET scan will not show anything spreading to the bone or my 10-11 day hospital stay might become six weeks.
I still haven't heard from the PET scan place yet. I called them after my visit with the specialist last week. They were supposed to squeeze me in sometime before a month is out. It's only been two days so... I have a zoom meeting scheduled with the reconstructive surgeon. I wonder if the whole team will be there and do they have the oncology surgeon, reconstruction surgeon, dental surgeon or just oncology and reconstructive surgeon?
My daughter wants me to write a list of things she can fix for dinner for a month or so. I'll have to give her the credit card and amazon log in so she can do the marketing.... So many things to think of... what to pack... I'm worried I might be in the hospital for my mom's birthday. She said she didn't want to do a birthday get together without me but I'll at least send the birthday fairy over with a plant or something...
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ozy Thanks For Keepingozymandible said:My daughter and I finally
My daughter and I finally canned up the marmalade yesterday. We did laundry and other odds and ends. Trying to finish a pile of face masks for my mom and my daughter.
Surgery will be in about three weeks. It is called "glossectomy with composite resection, floor of mouth, mandible, radical neck dissection(commando), tracheostomy right or left". Will have the NG feeding tube also. Hopefully the PET scan will not show anything spreading to the bone or my 10-11 day hospital stay might become six weeks.
I still haven't heard from the PET scan place yet. I called them after my visit with the specialist last week. They were supposed to squeeze me in sometime before a month is out. It's only been two days so... I have a zoom meeting scheduled with the reconstructive surgeon. I wonder if the whole team will be there and do they have the oncology surgeon, reconstruction surgeon, dental surgeon or just oncology and reconstructive surgeon?
My daughter wants me to write a list of things she can fix for dinner for a month or so. I'll have to give her the credit card and amazon log in so she can do the marketing.... So many things to think of... what to pack... I'm worried I might be in the hospital for my mom's birthday. She said she didn't want to do a birthday get together without me but I'll at least send the birthday fairy over with a plant or something...
Us updated on your situation. It looks like you are trying to live life as normally as possible in the shadow of your upcoming treatment/operation yet doing a lot of preparation too. It is good you are staying busy, less time devoted to thinking about it, and more time devoted to the family. Your daughter is a real blessing. If you are not out for your mom's birthday you can just have a belated celebration and celebrate 2 things at once. Bestest Wishes-Take Care-God Bless-Russ
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Thank you Russ.
Thank you Russ.
I have good news! My husband's last PET scan showed no cancer. It's probably still there just real tiny. He will still have some immunotherapy but now they will be focused on opening his lungs up so he can breathe. Maybe they'll put a stent in there. Brachytherapy was discussed because he's maxxed out on general radiotherapy from the first time he had cancer. Maybe they'll finally stamp it out with that who knows? Last year they were saying it was incurable. Husband thinks he'll be in treatment for the rest of his life though. It sure will be good to see him soon breathe easily.
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Oh just wanted to correct the
Oh just wanted to correct the post where I said reconstructive surgeon would be a zoom meeting. I called to check because of course they would need to take lots of pictures and yes that appointment is on site but all the others are zoom meetings.
Later.
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ozy,
I have to admit, for a person going through what you're talking about - you seem to have an incredibly good outlook about it ... and life in general!
I suspect with your strong family support, and the fact that you appear to have a great attitude, that you will pull through any surgery and subsequent treatment.
I'm sure the survivors on this site would be more than glad to assist you as much as it's possible for them to do!
I'm hoping you get the best possible result from your treatment!
You definitely sound like a tough survivor!!
mg
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I finally have my PET scan
I finally have my PET scan scheduled for around two weeks before surgery date. I have gobs of telephone consults scheduled- a dietician, hospice/palliative(I think this is for feeding tube), anesthesiology guy, two follow ups? and a visit with the reconstructive surgeon.
Still helping my son prep for his move. Yesterday my daughter and I went and ripped carpet out of his future room after getting the bed moved out. He was working yesterday. He has little or no time off available at this time and he has always been right there for us whenever we need something and will likely be around a lot to help my daughter look after my husband if he needs help showering or something on a bad day. I want to let him know how much I appreciate that by giving back as much as possible before I go in and become worthless for a while.
Eating is getting more difficult. I was just about liquid only yesterday. I did an enormous breakfast shake with instant breakfast, cottage cheese, yogurt, marmalade, almond milk, cardamom, cinnamon, ground flaxseed, flaxseed oil and a banana. Had a doctored up glass of buttermilk(turmeric, cumin, salt, pepper and a hint of garlic and onion powder)in the afternoon and made broccoli cheddar creamy soup for dinner with grilled sandwiches for whoever could chew. Essiac tea before bedtime. So far no weight loss. I'm such a goof when I get cancer I gain weight? Can you believe it? Haha.
Anyway, the seeing eye kid(my daughter's nickname since the awful glaucoma attack)is up so it's time for me to get a cuppa and rustle up some brekkie for everybody. Can't decide between oatmeal, malt o meal, grits or scrambled eggs. Anything requiring even a hint of chewing will be ground up-I just can't take it anymore. Been using the old heated rice sock a bunch at night in down time the referred pain is getting to be a real nuisance.
If I don't stay really busy I might get really afraid when I think about the upcoming surgery. I know it's necessary and will probably relieve all this nerve pain I just can't stand to picture the actual procedure.
Talk to you all later.
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