Minor Salivary gland cancer palate
I am brand new here. I had a 1 cm polymorphous adenocarcinoma tumor removed from my rear left hard palate almost 2 weeks ago. I first noticed it as a tingling on my palate 8 months ago. Then I noticed a painless swelling. I thought it would go away on its own because bumps in the mouth often do. 3 months later I showed my dentist. She had no idea so sent me to an oral surgeon. He biopsied and two weeks later told me polymorphous adenocarcinoma. He said it should come out but said it was non aggressive and no big deal. Didn’t feel like no big deal. 2 weeks later finally got to see first local surgeon. I live in a low population rural area. He offered to cut it out but no other scans until I pressed him. CT scan was sone and showed nothing remarkable.
Decided on a second opinion at the large university hospital in my state. I call insurance at least a couple times a week to make sure I am jumping through the hoops correctly. I decided to go with the university surgeon. He was much more thorough and during my four hour surgery decided he had to remove bone to make sure it hadn’t spread to the bone because it was right up against it. Also he removed the nerve to have it examined, so now my left side of my palate has no sensation.
Now I have a fistula about 3-4 mm though he said it might enlarge because the bone is “paper-thin”. Since he didn’t expect to make the hole there was no obturator available right away. He stitched a dressing in place and one week later a resident tried to make me an obturator. I am pretty disappointed with the hole, and with the device which hurts, wiggles around, makes me gag, I can barely chew with it, and doesn’t fully block fluids from getting to my fistula. Cost $3700. I am hoping to find a new prosthodontist or have the young resident try again.
I should be grateful they got it all and that at this point I don’t need radiation. I hope to gain perspective.
My surgeon would rather I use an obturator than get a repair of the fistula so he can more easily check for recurrences. What have others done? What is it like living longer term with a fistula and obturator? How long did your healing take and what helped you?
Comments
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Michele I would like to welcome you to the forum and I hope you find some help and support here. I would urge you to look at the Superthread section at the top of the page to see if there is anything in there that may help. I looked up your condition and apparently, it is not common, in fact in many instances is called rare, although there is a good bit of info available.
General Discussion
Polymorphous low-grade adenocarcinoma (PLGA) is a rare tumor of the salivary glands that is limited, to a great extent, to the minor salivary glands and commonly, but not exclusively, localized in the palate of the mouth. The major salivary glands are the parotid glands (at the side of the face, below the ears), the sublingual glands (below the tongue), and the submandibular glands (below the lower jaw). As the name suggests, each of the major salivary glands is of substantial size and visible to the naked eye. There are about 600 to 1,000 minor salivary glands that are microscopic in size. These minor salivary glands are found in the lining (mucosa) of the lips, tongue, and hard and soft palate, as well as inside the nose, cheeks, and sinuses.
Less than one (1%) percent of all cancers reported in the USA are salivary cancers and, of these, 80% begin in the parotid glands, and about 15% begin in the submandibular glands, leaving only 5% that begin in the sublingual and minor salivary glands. Most of the tumors that start in the major salivary glands turn out to be benign, while most, but not all, of the cancers that start in the minor salivary glands turn out to be malignant.
I do not have any direct experience with your type of cancer or obturators. Although there are 2 people in our local support group at the cancer center that have them. They have talked about living with them and I remember them saying there is regular cleaning needed after eating I think and that as you say doesn't fully block liquids, etc. I am sorry you have to deal with the obturator but it is what your situation has left you with. I think you were wise to get a second opinion on this to make sure you were confident in your own mind you were doing the right thing. And University hospitals usually can deal with something like this a bit better which is not a cancer that has a high percentage of being seen. Although i am not shortchanging any local doctors in this area, there are many excellent physicians and surgeons who are not at any major hospitals and or centers.
As far as your obturator goes I would think if it fits so poorly they would make you another at no cost. After all, it sounds like it is more off than just a little. I would go back and have them look at it and explain to them what is going on. In situations like this it doesn't make sense to me that they would make an item like this and basically say here it is you are stuck with it no matter how it fits. Surely they want their patients to be happy and enjoy life and having one of these that fits properly is a quality of life issue. I am sure you are glad they got it all with no radiation or follow-up treatment and I celebrate with you. Are you being monitored for this such as follow-up visits and scans? I don't know how often it should be done but I would think for a period of time they would do follow-up CAT scans with contrast, say every 6 months, or at least once a year. Check with your care team.
Wishing You the Best
Take care, God Bless-Russ
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Russ, I so appreciate your reply. It is a very rare cancer so it is pretty lonely. The term “low grade” may be removed from the name of this cancer because it can be more unpredictable than that name implies. I will have check ups, scans, and X-rays the rest of my life to check for recurrences, my doctor said. Check ups will be more often in first year because it can pop back up more often then. I donated my tumor for research and the researchers will follow me too.
The doctor who made my temporary obturator called and offered another appointment for an adjustment or redo. He is a resident at the dental school. But I am contemplating another prosthodontist in my state with more experience.
Right now it is overwhelming thinking of living with a prosthesis the rest of my life since I hadn’t expected it. I love to eat all ethnicities of food, to sing, to shout out the door for my kids to come home and kiss my husband. All that is forever changed or at least on hold indefinitely. Cancelled my semester teaching college because I could not imagine lecturing for hours at a time. Outwardly I look normal. It really is a hidden issue but socially debilitating.
I feel like a jerk because I know others have worse situations. Emotions go up then down again. Thank you for listening. 🙏🏻
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Michelle, all I can say is wow, great that they can use your tumor for research, so you are donating part of you to help others in the future. Scans more often during the year and you did get offered a redo on the obturator, great. It appears you are going to be well monitored and in my mind that is the key because the smaller cancer is detected and eradicated the better.
In your response you also said:
"Right now it is overwhelming thinking of living with a prosthesis the rest of my life since I hadn’t expected it".
Believe me, we are all here because we never expected what we were just like you are suddenly surprised with, a cancer situation.
Believe me, it can take a while to get adapted and through some rough spots but from reading about your care team and about you, trust me you will get back to all the things you love to do if not exactly as before, maybe a little differently. We call this the "New Normal"
One of my biggest challenges, and it seems you may be facing it was I totally lost confidence in doing things that were a little complicated or turn into complications. Things I had normally done before and thought nothing of it were now an impossible challenge. Such as putting in a new sink faucet. All kinds of worries about the fittings and how many times I would have to run back and forth to the hardware store till I could get done, would I have the energy to finish the job, and on and on. Working on a mechanical problem such as repairing mowers was too daunting when I thought about it. Now something like vacuuming or raking leaves, etc. was OK because it was straightforward with no complications possible really. Maybe cancer treatment gave me a vulnerability. But as time went on all wounds got healed and surprisingly it all got better although at the time we don't think it's possible, but it happens and we all improve and get better and get to our old selves or a new normal with adjustments.
Outwardly you look normal, inside you are too and still the same Michelle so don't let it hold you back any more than necessary. You will find recovery and learning to live with certain situations related to cancer is a much slower process than many other medical issues.
I still remember my radiation nurse sat me down and gave me the facts in a straightforward approach about how tough treatment was and what to expect. And she told me till I got my treatments and recovery in I might as well figure a year of my life doing it. never expected to use a year of my life, fighting cancer, but I did and here I am with my new normal.
You will get through this and be a cancer surthrivor when it's all said and done.
And above all (NEGU) Never Ever Give Up
Take Care God Bless-Russ
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I'm so sorry you're here, amichele. It is a club you never want to join, but we're glad you're here. I apologize for not being around as often as I used to be. I know you've read my blog, and I did post a reply to you there as well. 💗 As you know, I had minor salivary gland cancer as well in 2017. I'm happy to report that I've forgotten most of the details of my cancer: the grade of cancer it was, many of the tests, etc. And, with time, you will as well. You will recover. 💜
Now, as for the obturator, I'd recommended either getting it fixed, or having it removed. I'd talk with your physicians, including your primary, and get their opinion. The more information you have, the better informed you'll be, and the more comfortable you'll be with your decision making. Heck, I'd even call your insurance company, let them know that your obturator has been a failure, and what would they suggest you do? What is the risk if you have the obturator out? If you go obturator free? How thin is "paper thin" with regards to your bone? I do know other people here who did have successful obturator placement, and they are living well with them. You should have a good obturator placement, one that brings you confidence. ❤️
I don't have any salivary glands on the roof of my mouth anymore. My surgeon took them all, and I'm usually dry mouthed and pretty thirsty most of the time. A water bottle has become my friend, and in time, after healing, you'll probably need to keep water around, just as a comfort and as a mental health booster. You will speak again, in front of people, but you'll need to breathe a bit and take more water breaks. I can get "tongue tied" when I try to speak too quickly because of the changes to my palette.
I still have my fistula, it healed up to a point, and then I still have this tiny little hole that I can breathe through. But I don't want more surgery, so it is what it is, and I'm keeping my little hole. My surgeon said that she could do a skin graft and then it may work to seal the fistula, or it could fail. I just decided to live with it because I didn't want to go through something that could probably fail anyway. My life is good, the quality of my mouth is good, and I can even suck through a straw, a luxury I thought I'd never do again. 😎
I have great hopes for you and your future. And I'm grateful you found us and reached out. What an empowering thing to do. Please feel free to contact me any time. 💖
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You are awesome, Mom68, for taking the time to answer me! I read your response on your blog post too, it means a lot to me 💛
Your entire journey with this gives me perspective. I am still in the phase of feeling pretty depressed and the pain from the surgery still keeps me on the couch a lot. Hearing my own altered voice is distressing too so I don’t speak much with even my family and have avoided church and gatherings. I am even taking a few months away from my job. But you speak of how you healed and have been able to move on. You say your quality of life is good and you seem very accepting of the changes and challenges you have. I love that you can use a straw now!
My obturator is one I take in and out myself. My instructions were out at night, in during the day, out after every meal to clean. I only wear it about an hour or two a day for solid food at dinner because it is so uncomfortable and shifts around. Otherwise I drink Ensure, having learned how to tilt my head to largely avoid the fistula.
Did you get an obturator for your fistula? How big was your fistula at the start and how many millimeters is “tiny” as you describe it now? If you don’t have an obturator to cover it are there any issues with eating or drinking for you?
I have no sensation on the left palate now, which somehow doesn’t mean I have no pain 😟 The teeth all along the left are partially numb too. You said you lost all palate salivary glands, but did you also lose sensation?
I do saline nasal irrigation twice a day on doctors orders. I understand oronasal fistulas can lead to frequent sinus infections. Have you found that to be true for you? What is it like to have a cold when you have a fistula?
I peeked at my wound today and it is all different colors, very strange looking. The hole seems about the same size as when the dressing was removed.
You should know how important it was for me that you responded. It really relieves a lot of stress to have a little interaction with someone kind like you who has had a similar oral cancer situation. I know it takes time from your day, God Bless!
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You are awesome, Mom68, for taking the time to answer me! I read your response on your blog post too, it means a lot to me 💛
Your entire journey with this gives me perspective. I am still in the phase of feeling pretty depressed and the pain from the surgery still keeps me on the couch a lot. Hearing my own altered voice is distressing too so I don’t speak much with even my family and have avoided church and gatherings. I am even taking a few months away from my job. But you speak of how you healed and have been able to move on. You say your quality of life is good and you seem very accepting of the changes and challenges you have. I love that you can use a straw now!
My obturator is one I take in and out myself. My instructions were out at night, in during the day, out after every meal to clean. I only wear it about an hour or two a day for solid food at dinner because it is so uncomfortable and shifts around. Otherwise I drink Ensure, having learned how to tilt my head to largely avoid the fistula.
Did you get an obturator for your fistula? How big was your fistula at the start and how many millimeters is “tiny” as you describe it now? If you don’t have an obturator to cover it are there any issues with eating or drinking for you?
I have no sensation on the left palate now, which somehow doesn’t mean I have no pain 😟 The teeth all along the left are partially numb too. You said you lost all palate salivary glands, but did you also lose sensation?
I do saline nasal irrigation twice a day on doctors orders. I understand oronasal fistulas can lead to frequent sinus infections. Have you found that to be true for you? What is it like to have a cold when you have a fistula?
I peeked at my wound today and it is all different colors, very strange looking. The hole seems about the same size as when the dressing was removed.
You should know how important it was for me that you responded. It really relieves a lot of stress to have a little interaction with someone kind like you who has had a similar oral cancer situation. I know it takes time from your day, God Bless!
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Aw, you are so sweet! Oh believe me, when I say I was depressed, I was depressed. I spoke and it sounded like I was in a cave, and no sound projected out of my mouth. I had to pinch my nose to get people to hear me on the phone, and they'd offer to call me back because of the "bad connection" or my "cold." I actually ran into really nice people on the phone, with the exception of one guy who asked if could try and talk normally and not pinch my nose because it sounded "weird" to him. Sigh.
As for my surgery, I think it was a 2cm oral nasal fistula? Maybe 3cm? It was pretty big, in the back part of my hard palette, right where my gag reflex was, unfortunately. It took about 4 months to heal to a point where I could full talk comfortably. My surgeon took out all of the minor salivary glands in the roof of my mouth, so I had numbness. Very much like what you are feeling right now. Teeth brushing was a must, and I remember crying while brushing my teeth a lot. Not necessarily from the pain, just from the "other worldly madness" of it all. Once the skin started growing back in that area, the fistula slowly got smaller. And my numbness decreased. I still have some numbness. I think I just adjusted to the lack of feeling. I'm a big teeth brusher, and I have a new Sonic toothbrush that has massage mode and teeth whitening. My old Sonic toothbrush stopped working a few months ago. So, my time brushing has increased instead of decreased. Flossing was weird, but now it feels fine. Feeling around right now, feeling the roof of my mouth, it is very smooth, but not hydrated. Water is my anxious desire. I have to have at least a couple of bottles in my car, and one cold bottle with me during the day.
On the subject of teeth brushing, my surgeon pushed me to really get in there and brush frequently. She said a minimum of brushing twice per day, but now I'm up to 4 times a day: once in the morning, once after lunch, once at night as I'm doing my skincare routine, and then for the last time before I go to bed. I have fully engaged in teeth brushing, and my mouth is really healthy looking.
I also purchased a dentist approved fluoride treatment on Amazon, and use it monthly. I just turn the Sonic toothbrush off and brush it on the surfaces of my teeth, and spit the excess out. And then I don't eat/drink for about an hour afterward. I'm all about teeth/mouth health, frankly because I don't want any more surgery. And it empowering for me to take control of my mouth care in the small ways I can at home. I love flossing, and we also use a water pick as well.
I'd advise that you have lots water around. It helps me so much. I found myself sort of rushing out a long sentence today before my mouth dried up. Again, I have to really pace myself while talking. Slow and steady wins the race for me.
This is probably way too much information, but my skin was peeled back on the right side of my upper jaw on the hard palette. So, there is space, back towards the molars on the right side, where there is numbness. The skin is definitely thinner on the left side on the roof of my mouth. But overall, life is good.
I haven't had the current fistula measured, but I can hear it when I suck air through it. I haven't had sinus infections at all. I do believe in taking benadryl nightly, as it dries up my sinuses so I can sleep better. Now, it used to be back in the day that my family could hear me sucking in air through the fistula. Now? They will be right in my face, and can't hear it. I can heart it and feel it, but they can't. If I had to guess, my fistula is 1-2mm???
Also, when the fistula was bigger, when I went to blow my nose, oh the gross stuff that would come out. I fully believe in nose blowing, just to get any lingering grossness out of your sinus area. I would blow so much until I was light headed. But that's me. I just wanted anything out that wanted to settle in there. I like that you are doing salt water treatments. Those will help.
This probably isn't popular opinion, but I really like that you can take the obturator out. You may want to see how well it heals by itself, and then you can use this tool that you can take in/out to monitor your progress. I never had an obturator, and I'm kind of glad about that. I just didn't mess with any of that, as life was overwhelming enough at that point.
But like I said, it DOES get better. Before my fistula had closed to where it is now, I had to swish to make sure to get stuff out of it. Now that it is tiny, my life is pretty much normal. A new normal, but normal. I'm really grateful for everyone here at CSN that supported me, and I'm really grateful to have life, period.
Our salivary gland cancers are very rare. At the time of my cancer, there were maybe 4-6 of us on the support boards here. And then, even when we all had salivary gland cancer, others had major salivary gland cancer, like in the pituitary gland (which is in the side of the cheek). Ours is in the minor salivary glands, and it is even more rare.
I'm so grateful you're here, and you reached out. You'll be back at church in no time, singing hymns and speaking with other parishioners. I'm really grateful that they got all of your cancer out. Life is good because you're in it.
Love to you and your family.
And again, I will do my very best to answer any and all questions that you have. You are not alone.
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Mom68, thanks for answering me again! I have read your messages multiple times. You are very kind, I appreciate the words of support very much.
You wrote about how depressed you were, and that is awful. But I relate, and hearing how you are now makes me realize there will be better days. Seems like all I do is get up, take Tylenol or ibuprofen, watch my family eat actual food, rinse my nose, rinse my mouth, brush my teeth, call a doctor or insurance company, rinse some more then go back to bed. My husband and sisters are an excellent support these days.
The last couple days my pain has increased instead of decreased. Areas that were pretty numb now feel burned and throb sometimes. I still have plenty of numb areas though and now I hope they don’t wake up too. Like you I have a numb area behind my rear molar. I am afraid I am hurting myself when I brush as there’s occasionally blood. Do you remember how long the pain lasted with your healing?
You gave great advice on dental hygiene. Was your doctor concerned about your keeping your teeth, or that the fistula would cause extra cleanliness problems? Can you tell me what fluoride treatments you use?
I have pretty much abandoned the obturator as of the last three days. The last time I tried to eat solid food with it it kept falling out and food would get stuck in the back to the point where I thought I would choke.
Initially you said you had to swish to clear your mouth and the hole of food. How long after your surgery did you resume eating solids? Can you tolerate eating anything at all now?
How do you avoid getting water in your nose when you drink? To drink an 8 ounce cup of water takes great concentration and sometimes a full five minutes for me, with plenty of swallowed air and sips going down the wrong pipe.
You mentioned it took 4 months to heal to the point where you could talk comfortably, but that you still have to take your time and sip water. Did you have to retrain your tongue to articulate words differently? I find the more sentences I have to speak in a row the worse I sound.
I am very happy for you that your healing went so well. I would love for my fistula to heal to be as tiny as yours. But every person is unique and I can’t count on that.
It is never too much information. Whatever you are willing to share with me I am all ears, so to speak. No rush to reply if you are busy. Than you again 💖
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Michele just dropping in to say hi and wish you strength and stamina during your tough days. I don't have an obturator but I can relate to all the difficulties, pain, and problems you are going through as you work to a new normal, and hopefully, the hole will eventually shrink to small to nothing. That's what we are hoping for. Just work on getting through each day and there are better days ahead.
Take care, God Bless-Russ
Wishing You the Best
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Hello, amichele! If I fail to answer any of your questions in this reply, please remind me, and I'll be sure to answer them all. 💕
Depression: the reason I mentioned it is because I don't want you to feel alone. I don't normally talk about my depression socially, but I think with our group here at CSN, if it can help others, then I'll be more open here. My depression got better when I could eat again. Real food eating. I remember what it was like to try and swallow and not have stuff come out of my nose. So not fun. So, so hard. It is almost like a punch in the gut to have that happen. It will get better as you heal.
As for the "spotty pain" as I called it, I completely understand where you are coming from. I talked with my surgeon, and I had a steady supply of narcotic pain meds, that I eventually tapered off of and don't take anymore. I kept some around for that "coming and going" of numbness that you are talking about. I'd reach out to your physician and see if you can get a small round of narcotic pain meds, just in case the pain becomes too much. I had a couple of months of pain??? Maybe 4 months??? But it did eventually ease.
My surgeon, who is a very well respected surgeon and I love her, was greatly concerned about me maintaining my oral health. She is a big advocate of doing ALL THE THINGS: brushing, flossing, swishing, water piks, you name it. She LOVES the sonic toothbrushes, and I am obsessed with mine, along with my water pik. I also did bleed, and that scared me and I did talk with her about it. She was great to work with and she saved my life. And now her best friend is my dentist. I just adore both of them. If you are experiencing blood when you brush, give your physician a call. You should be receiving support and guidance from them. My surgeon met with me every couple of weeks until I told her I was okay. That was the way we handled it. She knew that I suffer from anxiety, and so she worked with me all the way through it. You deserve that same respect and honor. Give the surgeon a call. 💗
As for the fluoride, initially I used a 3M product: Oral Care ESPE Omni Gel 0.4% Stannous Fluoride Brush On Gel. It supposedly had a good mint flavor, but it honestly tasted terrible. And no, you don't swallow it, but I could still taste it while it dried on my teeth. I'd turn my sonic toothbrush off, and then pour the very runny liquid on my brush, and then sweep it all over every part of my teeth I could reach. I haven't had a cavity since. Now, however, I use Colgate Gel - Kam. https://www.amazon.com/gp/product/B0013TXFFY This stuff still is the same runny consistency, but it tastes like mint. Some people use it once a week. I use it once a month, and I try (and sometimes succeed) in getting my family to use it as well. If you have a sore tooth, sweep some on. It really does help. Yes, fluoride does stain your teeth, but that's what those every six month dental cleanings are for. Oral health is key.
I started eating solid foods again when my surgeon and I agreed I could, based on my healing. I think it was around the 1 month point? It may have been up to 6 weeks. Again, once I got past the worst of it, I started forgetting all of the details I swore I'd remember forever. I promise it does get better. There is so much blood flowing through your mouth area, that healing takes place pretty quickly. I'm glad you're giving it a go without the obturator. Who knows? Maybe that is the way forward? Again, consult your physician, but the top part of your mouth should heal and close up fairly well. My fistula is so tiny (or not tiny? I'm not really sure) that I live with it daily without much thought. My husband swears he can't see it, and I don't go looking for it either. 😅I hope yours heals that way as well.
"You mentioned it took 4 months to heal to the point where you could talk comfortably, but that you still have to take your time and sip water. Did you have to retrain your tongue to articulate words differently? I find the more sentences I have to speak in a row the worse I sound."
This paragraph hit me so hard, and more than I thought it would. You have really precisely described what I go through, and I never knew that I was going through it. You taught me something today.💖 I do feel rushed when I speak. And I worry about how I sound when I do speak. I mispronounce words more often now. I think I'm fairly intelligent, and pretty well spoken historically. Now? I feel a bit "off" when I talk for long periods of time. And I have always enjoyed conversations with people. Always. I love hearing people's stories, talking with them. That sense of community is priceless. But we'll walk that path towards wholeness together now, if that's okay. 💞 I don't think we're alone in that desire for more succinct communication. I think having a head/neck cancer is like that for many who have been through these community chat boards.
I'm really grateful for where I am in life, and I hope you feel that way too. Please feel free to message me any time, and ask more questions. I'm here. ❤️
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Hello, gals hope you are doing well. Mom thanks for your kind comment and for being so open and sharing your heartfelt advice and account of what you went through. Sometimes it is tough to do that but I think it helps us as much as it helps the person now dealing with cancer.
I would like to just add to the oral care part of the discussion. Mom is right you now have to be fastidious about your dental care. Also in the future, if you need any extractions get with a dentist or oral surgeon that will work with your radiologist. They should be sharing your radiation fields of coverage because it can damage blood flow in the bone and in his case the jawbone. But hopefully, your jawbone was not heavily radiated in your case. When I got my last extraction the oral surgeon wanted me to get HBOT (Hyper Baric Oxygen Therapy) before the extraction and a number of them afterward to enhance blood flow and healing.
Also, our local H&N support group at the health campus once had a lady come in and do a presentation on oral care and products that would help. One product she had that I still use to this day is Squigle toothpaste.
I buy it off an eBay vendor but there are other places to get it. Here is a link to their website and information page--
Also, my dentist has me using a product called Denta 5000 Plus which I think is the generic of prevident toothpaste topical. This is a Prescription toothpaste through your dentist.
How does denta 5000 plus work?
Denta 5000 Plus comes in the form of a cream and is used to prevent tooth decay. The active ingredient in Denta 5000 Plus is fluoride, which is a substance that strengthens tooth enamel thereby preventing tooth decay.
This is applied at night before you go to bed. I am instructed to brush my teeth well and rinse as normal. Then brush with prevident for 2 minutes and just spit out the excess you need to and do not rinse so it protects your teeth overnight.
Also, my dental hygienist wants me to use Act Drymouth Mouthwash in the morning after I brush my teeth and keep it in my mouth at least 30 seconds swishing it around. It is supposed to---
- Aids in the prevention of dental cavities
- Strengthens teeth
- Moisturizes mouth tissue
That's some of my regimen post-cancer treatment and may not be for everyone. Check with your dentist and hygenist who cleans your teeth to help decide what's best for you.
Wishing You All the Best
Take Care God Bless-Russ
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Hi again, Mom68! Thank you for the reply and your support through this. 💞 I know you have moved on very well from your difficult experiences of a few years ago and appreciate you reliving some of it again, though the memories are not always the best. Your stories and feedback give me insight and context for what I am going through that no doctor can.
Your description of the "spotty" pain is right on. Though that sounds like it was hard, it gives me a little comfort to know it is probably just normal for where I am at. Sometimes it feels like a very bad mouth burn, other times there is a strange sparkly pin-prick sensation. It helps to distract myself. Right now I am alternating Advil and Tylenol throughout the day.
Thank you for the specific recommendation on the fluoride and other dental care tools. I have put several items you and Russ suggested in my Amazon cart. I have definitely upped my game with the time I spend of flossing and brushing, though I am not as vigorous or thorough on the surgical side of my mouth as I would like to be yet. The teeth on that side are still very sensitive, sometimes achy, yet also kind of numb. Such a strange feeling. Did you experience strange sensations or pain with your teeth as you healed?
Stress about the expenses that keep on flowing as I work through this treatment phase add to the increasing anxiety. The bills for the many tests and surgery have yet to arrive. I am insured through my husband by a very small company and it has been a steep learning curve to figure out how to interact with them. I live in a rural area and also have to drive 3 hours for my appointments. The final obturator alone will run over $10,000. My insurance company denied approval for the second prosthodontist my surgeon referred me to. I may be stuck visiting the young resident doctor again. In the larger picture I should be grateful I am even able to see him.
It sounds like you developed a great relationship with your surgeon. I really do like mine, but he is a little remote. I know his nurse much better than him. I message her and call her but usually have to give it a few tries before a response. It is summer and there were some vacations peppered in there too.
I had a four week check-up on Monday which went well. The doctor said I have excellent "granulation tissue". So the lumpy stuff in and around the excised area is not exactly skin yet, but a stage towards that. Granulation tissue sheds thoughout the day, and must be what makes the mouth taste so nasty in the morning. Sorry if that is too much information! He was also able to remove the last sutures from when the dressing was removed. They had not absorbed, and were causing lots of irritation. I was proud because I did not panic or faint when he went in with the snippers like last time. He said my fistula is about 7mm, so actually a bit larger than before. Maybe mine is moving in the other direction from how yours healed! 😑
Was the area of bone removed from your palate 2-3 cm? As it healed to be smaller was it skin that created that closure over the hole in the bone? If so, is there a soft spot on your palate? My doctor said the bone would never seal shut, and said fistulas can change shape and size a little as they heal but sadly usually not get smaller.
Until I am fitted for a working temporary obturator they want me to continue the full liquid diet. I am not very inspired so that means pretty much Ensure. I have lost ten pounds which is not unwelcome, but it also means I don't have tons of energy. I used to walk 10 miles a week and lift weights almost every day. I have not touched the weights, and now walk about 6 miles a week at a slower pace. I don't like the way my pulse throbs in my palate if I get my heart-rate up or bend over.
The doctor said that for my cancer the most likely time for recurrence is in the first 5 years, but it could come back literally any time in my life. If it does then I would have another surgery and follow up radiation. I will have to have an MRI at 6 months, and then yearly along with X-rays. Do you return for regular scans also?
I think I have asked this in various ways already, but it is my obsession. Do you eat hard and crunchy things like popcorn now? Do food particles get into your fistula or nose anymore? When did that stop happening to you? Are you able to smoothly drink a whole glass of water or just sip? I am sorry if you already answered these...
I am now afraid of solid food. The psychological distress of getting bits of food up the nose is part of it. I don't want anything rubbing on my palate. I have to discipline my tongue to stay away so there is not too much friction.
What you said about speaking really resonated with me! I have gone to a couple of soccer games for my son and sit off to the side. I have exchanged brief pleasantries with people. Sometimes they say "what"? Sigh. I need to get out of my own head! Unlike you I am an introvert so staying home is mostly all right for me. But, the class I was going to teach at the nearby college started yesterday with a bright young substitute. I just couldn't. I have learned that talking a lot right now hurts physically and mentally too much at this stage. You definitely are an intelligent and well-spoken person by the way❣️
Thanks for leaving the door of communication open! I tend towards the gloomy side, and your messages cheer me up for sure. I am grateful for you listening too as I go through these stages. 🌸
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Dear Russ,
Thank you thank you for the product recommendations! I am going to get some Squigle toothpaste for sure. I will call my dentist and ask about the prescription level stuff. I don’t think I will see anyone for a cleaning anytime soon, though I can feel tartar build up on my lower teeth.
I was actually thinking of switching dentists because they do not do routine cancer inspections in her office. At most offices I think they look around the oral cavity and even pull out the tongue to look for bumps and lesions. Maybe I am over-reacting. The dentist herself is a breast cancer survivor.
What is your story with head and neck cancer, Russ? How far out from treatment are you? I would love to know more if you would like to share.
You have been so kind to keep communicating with me. I love getting the messages and support! 💞
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Michelle, thank you for your kind comments. I do hope the dental suggestions do help you. I did go back to the top of the page and check your story and if I am correct you only had surgery not chemo or radiation for a follow-up. The main concern for dental care in H&N is when you have radiation and it is especially close to the jawbone or I guess any bone structure because it damages the bone and affects the blood flow which is necessary for healing, say in the event of extraction of a tooth. And of main concern also that has the biggest impact on dental care and health is damage to the salivary glands during radiation and diminished or no saliva flow. If saliva flow is affected due to radiation it affects a lot of things in the mouth such as the normal balance of bacteria. That is the biggest enemy dental care-wise we H&N people have is reduced saliva flow due to radiation. I will post below some facts as to what saliva does for us.
Saliva isn’t something you probably spend much time thinking about. But did you know that every moment of every day it affects your health? Saliva is vital for a healthy mouth, good digestion, and more. Read on to learn how saliva does a body good!
What is saliva?
Saliva is 98 percent water. It contains small amounts of important substances, including mucus, proteins, minerals, electrolytes, antibacterial compounds and enzymes. Saliva moistens the mouth for comfort, lubricates as you chew and swallow, and neutralizes harmful acids. It also kills germs and prevents bad breath, defends against tooth decay and gum disease, protects enamel, and speeds up wound healing.
Saliva originates in the three pairs of major salivary glands and in hundreds of minor glands surrounding the oral cavity. The major salivary glands responsible for most saliva production include the parotid (inside cheeks), sublingual (under tongue), and submandibular (near jawbone).
Tiny tubes called salivary ducts carry saliva from the glands into your mouth. Small amounts of saliva enter the mouth constantly to keep the mouth moist. The salivary glands really kick into action when you eat, or even just think about or smell food. Then your glands make lots of saliva, and you can notice much more of it in your mouth. An average person produces 2-4 pints of saliva every day.
Why is saliva important?
Saliva is an important part of a healthy body. Research shows that it protects against gum disease, tooth decay, and other oral infections. A thin film of saliva covers teeth and buffers against bacteria, while antimicrobial agents in saliva kill disease-causing bacteria. As saliva moves around the mouth, it sweeps away small bits of food that feed the bacteria responsible for tooth decay.
Saliva neutralizes acids in the mouth that break down tooth enamel by washing away acidic residue from eating. When acid damages enamel, saliva repairs the tooth’s protective surface in a process called remineralization. Calcium, phosphorous, fluoride and other minerals contained in saliva repair the enamel surfaces of teeth, keeping them healthy, strong and resistant to cavities.
Saliva also plays an important role in digestion, thanks to an enzyme called amylase. Digestion begins in the mouth, when amylase breaks down starch, maltose and dextrose into smaller molecules. It also helps you to swallow food, by making it wet and soft, so it can slide down your throat more easily.
Michelle just talk to your dentist to make sure they are comfortable they can keep watch on your condition and know the effects to look for if a problem is developing. Each of us has our own situation and we are a little different, although similar. If your dentist is not comfortable with dealing with your situation or you don't feel you are confident in them then switch to another dentist. I am very Blessed by the fact that my dentist is up on dealing with people with H&N cancer treatment. And his one dental hygienist which is the one I see is especially up on it. They keep a close watch on me and the office there has some other H&N patients also. If I need an extraction or something more than my dentist feels comfortable with he sends me to an oral surgeon. This oral surgeon works closely with my radiation oncologist and knows my radiation fields and the areas they covered.
Michelle as far as my cancer story goes it is too long to go over here. I can tell you I have had cancer 3 times and 2 of them were pretty major events. I have had throat cancer, tongue cancer, and lymph node cancer. If you want the whole story just click on my picture or name, then click view profile and you can read my story there. You can view any member's profile by doing this. Maybe you want to start your own.
So I would say if you have not had radiation or your saliva affected some of the things may not apply to you but I am sure with a fistula you still have to be very mindful of your dental health and know what to do to take care of your fistula.
Wishing You the Best
Take care, God Bless-Russ
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Russ, you are right, I have not had radiation. Just the surgery so far, and the stages of healing and trials of being fitted for an obturator to cope with. My doctor said if I have a recurrence then I would have radiation along with a second surgery. I feel a lot more informed about what this might be like due to your and other's information and experiences shared here. I am sure experiencing it firsthand is very different than what I can imagine, and I have such admiration for the many warriors on this website who have braved much more than I have.
Have two appointments this week to get assessed again for a new obturator. The liquid diet is getting hard, and my lack of appetite leaves me light-headed sometimes so I have to try harder to eat more.
I did go to your profile and read your story. You are so articulate and your story is very compelling. I can only hope I would have an ounce of your courage if faced with the challenges you have met. Thank you again for sharing with me.
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Michelle, hello again, my reference to you not having radiation was just that a question and a reference point in relation to the fact that you would not need to be maybe quite as fussy about dental care.
I am so glad you have found some help and insight here and learned from the folks and your experiences. But I am willing to bet it has just shined a light on your surgery and obturator circumstances and made you realize what you went through and are still dealing with since you got on a site and got some personal exchange with others in the H&N community. Yes, there is always someone else who has gone through more but I can truthfully say your surgery and dealing with a fistula and trying to get a good fitting obturator fit up is no small task. You are standing strong and you will get through your situations one at a time.
I sure hope you can get a good fit on an obturator, I would imagine it is not an easy task fitting someone up for one. I have known 2 people in our local support group who have had them and they never commented on it not fitting well. Mostly they said an obturator adds its own new set of maintenance and cleaning tasks into the mix.
Sorry, you are having trouble eating and having a loss of appetite, try to get enough calories in each day to maintain your weight.
Are you using a Vitamix or a blender to make up your liquid diet or are you buying it all ready-made? I have a listing of weight gain recipes saved from this site and other places, I will post it at the end of this post in the event any of it may help you.
I am glad you read my story and I hope it helps you realize you can do more than you ever thought and get through more than you ever imagined when you are forced into it. And that is me. I know you commented on my courage but if you would have told me well you are going to go through this or that I would have taken off running the other way. Don't get me wrong I appreciate your kind words and gentle spirit. But I am no hero just a guy trying to make the journey a little easier for others and putting my Faith and Trust in Almighty God.
So, Michelle, I hope things go well for you this coming week and the weeks beyond, and your problems are manageable, and you get a great obturator fit and work on that eating thing so you get enough in. If you get a good obturator fit will that take care of your eating problems and can you go back to normal food then, just wondering. Posting the weight gain recipes below, hope it helps. Starts with an excerpt from a posting.
Wishing You the Best
Take care, God Bless-Russ
Welcome
To the forum glad to have you. I too ended having a small nodule on my lung and liver but they are just being watched for now and I believe unless they start growing nothing will be done. My sister had one for years they were watching and it finally started increasing in size and I believe they used a cyberknife on it and it is gone. I would imagine your case is similar with a watch and see approach.
The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle https://www.nestlenutritionstore.com/boost-very-high-calorie.html I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.
Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.
Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--
Deb,
So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:
1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)
Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!
Karen
These Recipes and Tips Are From Debbiel0 on CSN H&N Section
And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--
- Coffee cream ( 18%) 1 cup 480 calories
- Coconut milk 1/3 cup 150 calories
- Greek style yogurt 1 cup 270 cal
- 2 tbsp Ground Flax seed 100 cal
- 3 tbsp Hemp Hearts 170 cal
- 1 tsp nut butter 100 cal
- 1 tsp honey 100 cal
- banana 80 cal.
I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.
Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)
Use honey as much as you can in tea or coffee, or just in warm water.
I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.
Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.
I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!
Split pea soup and baked beans with honey are great for calories..
The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)
Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.
I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.
Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!
Also Here Are A Few More Postings For Weight Gain From The Forum
Flyinhigh says:
High calorie
I use a powdered mix from GNC called 1340. If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories. I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein. You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).
Grandmax4 says:
calorie
I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious
Drivingdaisy says:
Drinks
Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant. Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.
Suzj says:
if you want to mix it up..
If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories
In Closing:
I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.
Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.
Be patient and Eat, Eat, Eat.
I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ
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Hi Michelle!
I'm sorry it's taken that long for me to reply. I had a busy week. So, I'm taking the time this weekend to answer. 💗
After the surgery, brushing felt very vulnerable, and I had to often force myself to brush. My surgeon was great about pushing me, even though I didn't want to.
My dentist just looks really closely at my mouth every six months, during my scheduled teeth cleaning appointments. I have no further follow up with my surgeon, but I can schedule an appointment and go see her anytime I want to.
As I'm feeling around in my mouth, it feels very firm and bone like where the fistula is. Lots of skin has grown there, but some minor remodeling has also occurred. So, I have had bone healing and regrowth as well, but it's mostly skin that sort of "came back together."
I can eat anything. I can down a whole bottle of water, I don't generally have issues with any foods. My biggest issue is cleaning my face. If a facial cleanser tastes awful, it'll get in my fistula and cause issues for me. I'll blow my nose until the fistula is clear again. I will gag until I get it resolved.
So, with all due respect to your surgeon, I think you will probably heal more than he believes. Of course, he is your doctor, so he knows more about your mouth than I do.
That's so great that you walk! That is so inspiring. I do need to exercise more.
Please don't give up on your healing. I'm sorry that you are still on a liquid diet, but Russ has you covered! ❤️ Those recipes are fantastic.
Hang in there. One step at a time. I'm really grateful you're here.
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Hi again, Russ!
Thank you for the great support and all the food ideas and recipes! 💚 I was inspired by you to take a little more initiative and try to start cooking for myself instead of just drinking Boost and Ensure. I have started making all variety of creamy soups that my family can also try. I still have to have the shakes to keep up the calories, but I haven't lost weight this week.
I also signed up for the Bible study group at my church, which felt like a big deal to me! My mother-in-law leads it and told me I can talk as much or little as I want. Since I am not working right now I need something to get out of my box. I have also resumed visiting two elderly ladies I know from the nursing home my dad used to live at. Getting into the world more gets me out of my own head and worries for a while.
I am glad you are able to eat and enjoy food after all your treatments. I expect eating solid food will be slow going for me when I get back to it. For one thing digestion has completely changed, and I don't want to shock the system with too much fiber at once! My teeth feel out of practice. It almost seems intimidating.
My doctor has not mentioned a speech therapist but it is something I will bring up at my next appointment with him, thank you for the suggestion!
You have such a gift for sharing your story and encouragement to others, Russ. I thank you.
Hi again! Thanks for you reply. Never worry about taking your time to reply to me. I am just happy to have people to share this experience with. The fact that you are busy is comforting. It means that you are having a normal life and have really moved on which is a definite goal of mine.
I love that you can down a bottle of water easily and are able to eat what you want, that sounds wonderful. I get what you mean about the facial soap! I have to be super gentle when I wash my face because the lightest tugging on the skin around my nose and mouth pulls on the healing palate skin and really does not feel good. Even resting my head on my hand hurts. Or wearing my glasses all day, sigh. I had no idea it was all connected like that.
Thank you for the description of your palate after you have healed. The body is amazing, and I think it is great that you healed so well you do not need an obturator. I assume you also have no leftover pain, just some numb spots?
I have been braver and taken a peek into my mouth more often. The new tissue is very lumpy and reddish, not pink like the rest. I hope it will smooth a little over time. My teeth got some unwelcome stains from the Peridex mouthwash I was prescribed which is too bad. My left palate is numb to the touch, even the teeth don't have sensation like they used too. But the pain is still there, though it seems to alternate between bad days and ok days now.
I went to a different prosthodontist with much more experience on Monday. Her examination of me was so caring and thorough and such a total contrast to the first office I went to. She is making a treatment plan for me that I can present to insurance for one last try to get out of network coverage. If they deny again a relative has offered to help pay for the visits with her, which is a relief.
This doctor confirmed something that I had begun to suspect. There are actually two fistulas on my palate. They are about 6mm apart, and the second one is smaller. I could feel the air with my tongue, but because the tissue is so lumpy it was hard to tell what was going on. So instead of closing up, I seem to be going in the other direction. There is a chance she said that the two fistulas would merge into one as I continue to heal. The surgeon removed such a long piece of bone, I think it weakened the palate and maybe even the pressure from the poorly fitting obturator was too much for the thin spot.
I look forward to my next appointment with this new doctor so I can take steps back to my old self in terms of eating and talking.
I hope you are enjoying the last days of summer and just enjoying life in general! Thanks for talking with me. 🙂💗
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