Low Grade MEC on hard palate

Ana87

Hi there!

I wanted to share my story and ask if someone had similar issue (I read a lot of comments from ekdennie here, I think your case is similar to mine and it would be great if you reply here 😊).

I had a lump on my hard palate for about 1.5-2 years. It did not hurt, and it was as smooth as my hard palate, so I thought it was a cyst or a boney growth. My oral hygienist never told me anything about it and told me I had great and healthy oral cavity.

It did not bother me until last November (2023), when I caught a cold and took a look at my throat and saw my hard palate - it was red with now a bigger lump. I went to my therapist and she sent me to a Stomatology Institute in Riga (I am from Latvia 🇱🇻😊). There the "fun" began. The oral pathologist thought it was a cyst, but offered to to a PET scan. It showed that the lump was sticked to the palatal bone, and it meant a malignant growth. They took a needle biopsy, but it did not show anything.🙅‍♀️ So they took a deeper biopsy and it came back as a Low Grade MEC.

CT scan showed clear neck and chest and the tumor did not spread. I was lucky that there was an available date for a surgery in a week (December 2023). So an ENT-onclogist removed the tumor with safe margins (in total, almost all of my hard palate, and palatal bone), and a plastic surgeon closed the hole with a muscle/skin from my leg.☺️ It healed so well that now it looks like a normal hard palate (only without the bone😁). The doctors told me that I can get a tattoo over a scar on my leg, so now I have beautiful flowers there.🤗

The report from surgery came back with R0 resection margins (clear margins), no perineural or lymphovascular invasion, to necrosis - LOW Grade MEC, but because it was sticked to the bone, it was pT4aN0M0. This scared me so much..😥 The margins were wide, but still from one side it was close, so they decided to to IGRT radiation. I did 29 rounds (Finished 1st of March 2024), had some side effects, but not critical - in the end of the therapy there were some white patches in my mouth and some trismus, but they disappeared in 1.5 weeks after therapy ended.

My latest CT scan was clear, and my doctors think that it will not come back. They say I have a good immune system and everything should be good, but they want to see me 2-3 times a year and some MRIs a year.

I am now worried about the late effects of IGRT. How will it affect my teeth and gums.. I am worried about the osteonecrosis (however my radiologist told that I probably will not have it), about cavities, gum health. Last appointment to oral hygienist (a new one, in a good dental clinic) was good - she told me that I do not have cavities at the moment and the gums are healthy. She recommended fluoride toothpaste (which I used during IGRT as well) and that' s it.. Please tell me how your teeth and gums are doing now? I started feeling that my gums became more thick.. They look the same, do not hurt or bleed, but are like.. thicker than before. I am worried about the fibrosis, that can occur after IGRT..

And of course the emotional side… Doctors say - just live your life as before, but I am not the same person after this. And I miss my previous self so much.😪 The free life when you trust your body and do not stress about each tiny spot on your body.😥 I keep checking my mouth 10 times a day, however the doctors told me not to do that. The anxiety is so huge. Will it go away? How did you find your new normal?❤️

Thank you for reading, and I will be happy to read similar experiences! Love and good health to everyone here!💓

Love,

Ana

Ana87

Sorry, I did not tell about myself in the first post. I was 36 at the time of the diagnosis, female, never smoked, barely drank, active gym goer..

Now I am wondering how did I get this tumor.. From one side, when I was 7, I had a surgery in the same place that the tumor was (I scratched it with candy and a small lump appeared) - but in the 90s noone did biopsies etc. Now I think - what did they cut out then? Maybe this is somehow connected.. And yes, I had this stupid habit to rub my tongue against my hard palate. And also I had several traumas in my hard palate because of hard food (roasted bread etc). So I guess this is all my fault.😔

@ekdennie and other survivors with similar case, please share your experience, and how are you doing now! It would be very helpful!💖

Huge hugs,

Ana

wbcgaruss

Hi Ana from Latvia, Russ here in the USA.

This is great, glad to have you, it shows we can help support each other from all over the world in this forum.

Ana, you have been through a lot with H&N cancer like the rest of us. You had quite a surgery and follow-up radiation. And I have always felt like the palate is probably one of the most difficult areas to deal with. I have not had your kind of cancer or the area yours is in but I would like to share some things with you since you have shared with us.

To start off, I don't think the normal things like a candy scratch, eating hard bread, or an unusual tongue habit, but who knows, I don't think there is a way to connect it, ask your doctors.

Also, you lived a healthy lifestyle but sometimes the luck of the draw turns out bad. There are a large number of people on here who never smoked or drank, ate healthy stuff, and ended up with cancer. Who knows? Something just goes wrong in the cells.

I think the IGRT radiation is one of the better ones and is more focused so hopefully, the effects will be minimal.

IGRT allows doctors to maximize the cancer-destroying capabilities of radiation treatment. At the same time, it allows them to minimize its effect on healthy tissues and any treatment side effects.

Congratulations on your clear scans.

You have taken good care of your teeth so far which is very good, but now you need to be more vigilant, being sure to brush after every meal and floss once a day. And my dentist has me using Act Dry Mouth Mouthwash in the morning after brushing and at night brushing before I go to bed and following up with Denta 5000 a higher concentrate fluoride which is a prescription toothpaste.

If you ever need an extraction your dentist or oral surgeon should work closely with your radiation doctor as to the fields and strengths of radiation you received. They may also want you to get HBOT treatments (Hyperbaric Oxygen Therapy)before an extraction which promotes healing and blood flow.

I have never noticed the thickening of the gums you are referring to.

Ana, you will find your new normal.

But Head & Neck cancer recovery is a slow process measured in weeks and months, not days and weeks, so just be patient and live one day at a time to the fullest.

It can take a bit but dealing with the anxiety each day head on and telling yourself you are not going to let it run your life.

Don't hold back and live as normal as possible.

You just survived a major surgery and radiation treatment and things are going to be more seemingly out of whack for a while but over time we adapt and work with any altered situations we have.

You are still a young lady with many years ahead of you and you will bounce back.

Every day is a gift and every day is a blessing.

If you find yourself down just get out a sheet of paper and start writing down your Blessings and before you know it you will have quite a list. it can be anything from I can go to work today, I helped my neighbor and I had time to stop and smell the flowers or I saw a beautiful sunset or some of us have pets we care for there is so much to list, hugged my mom today, called my brother or had lunch with him. We take these all for granted but in the light of a post-cancer experience, these are extraordinary acts.

https://www.youtube.com/watch?v=9fMjgS4vu4o

I personally always pray every morning and during the day for the great gifts and Blessings He has given me.

So, Wishing You The Very Best

Take Care, God Bless,

Russ

Ana87

https://csn.cancer.org/discussion/comment/1718812#Comment_1718812

@wbcgaruss dear Russ, thank you so much for such a nice reply and support!🌸Huge hugs from Latvia!😊

This is strange, but for me hard palate was quite an easy place to treat, because.. it' s just a hole in the roof of the mouth that can be (and was) closed.😁 I read about other reconstructive surgeries people get in the oral cavity, and these are much complicated in my opinion (like jaw, or tongue).🙂 But maybe it's because they removed the bone and the nerves, and I had no pain.. I read that if they leave the bone and nerves, people get chronic pain in the hard palate..😥

My next check up is in December and yes, I want to speak to my doctor about the possible reasons. But I think irritating and traumatizing the area from time to time may lead to changes in cells/DNA.. this is my interest now.🙂 And I have found so many young people on social media, who had oral cancer.. They all say that they never smoked and led a healthy lifestyle.. so indeed, who know what caused this..💁‍♀️

Thank you for your advises about teeth care! I have been told by my radiologist not to pull out teeth and not to place implants in the next 3-4 years, while the jaw and gums heal.. Hopefully, I will not need to as my teeth will remain healthy.😕

I agree, that after such diagnosis you see life in a bit different way, and it is really good to be able to enjoy the little things.😊 I have a diary, and I write in the evenings what good things have happened to me today.💝It helps so much, and usually it is quite a long list. I am grateful! And yes, I have a cat which I love so much, she was always by my side when I was recovering from surgery. When anxiety comes, I try to focus on my kitty and to play with her.😺 I pray a lot too, and go to church.💓 This gives me a feeling of safety.🏵️

Wishing you all the best, Russ!🌞 Great health, and many many things to enjoy every day!😊

God bless,

Ana