Hello,
I was recently diagnosed. Thursday afternoon to be exact via a telephone call. Sadly I didn't hold onto much of that conversation.

So here we go down my little rabbit hole.
In 2014 I went in for a regular dental exam & cleaning. Hygienist noticed there was a mass on the roof of my mouth. I was referred to see an oral surgeon. I skipped that and went straight to my Dr and let her know that I was worried. Completed a CT and when the results came in she said things were ok and to just go see the dentist. Sadly I didn't go, Life got extremely busy with a little one who never slept. Then a daughter fighting with depression, suicidal thoughts and self harm. In the meantime the mass at the roof of my mouth grew and I was in a ton of pain.
Nov 2016 I saw the dentist, who immediately sent me to the oral surgeon. He did a panoramic X-ray and you could see that the mass was in my sinuses. They immediately got on the phone with my Dr. so she could schedule at CT.
Had a CT the next day,and a referral to ENT. Saw him on Dec 1st at that's when he told us it was cancer. From the CT he could see that it was in my sinuses and my bone. He took a biopsy and referred me to go see a dentist to get impressions done for an oral obturator. Now I'm scheduled for January 3rd for a maxillectomy to remove the mass and part of the roof of my mouth and some teeth(not clear on which will go or stay).

I can't remember the name of cancer that he said I have on Thursday. I do know that it's in my saliva glands and it starts with an E. Also that they didn't have enough of the mass to determine what stage. I'm a non smoker, rarely drink and no HPV.

So needless to say I'm feeling so many different emotions. And also numb in processing it all. I know I have a bunch to do to get ready... and I don't want to do a thing... but feel that I should be busy... kids keep me pretty preoccupied.

As I recover from the surgery they'll evaluate the mass and my case will go before a tumor board to come up with a plan for RAD.

Any suggestions would be extremely helpful as what to expect, how to prepare and best coping strategies. I have a teen daughter and soon be 4 yr old that live with us. I want to make sure that they along with my husband are okay since they will have a front row seats in this new chapter in my life... we'll all of our lives.

Welcome to OCF, Andy! Im very sorry you have a need for our group. You are in the right place to get info and support to help get you thru some rough days ahead. We have been where you are and understand all too well about what you are going thru.

There are many tricks to help you deal with preparing yourself mentally. Im sure the cancer diagnosis came as quite a shock. Being forced to face your own mortality is not easy. Just remember the fear of the unknown tends to create alot of "what if.." thinking which can quickly snowball into lots of negative thinking. Dont let yourself dwell on the negative or "what if..." thinking for more than a few minutes then get up and "change the channel". Physically get up and go do something positive that will keep your mind engaged. Your little one should be a great distraction to letting too much negative thinking get the best of you.

As you are finding out, there are so many appointments. If you havent had a second opinion I would strongly recommend getting one. If you are able to find a Comprehensive Cancer Center (CCC), that would be an excellent choice for a 2nd opinion and even a treatment facility. They use a team based approach so all the experts are on the same page and work together to create your treatment plan. Tumor boards are when all the specialists get together and discuss each individual case. Then a treatment plan is created well before any surgery is planned. There are even places that provide free or very low cost airfare and rooms for cancer patients who travel for their treatments. Find the very best medical team you can and get started to eliminate the cancer. It doesnt sound quite right the way you explained how you would have surgery and then your facility will have their tumor board meeting afterwards. It should be done both before and after with patients and their caregivers able to attend.

Anyone who offers their assistance when they find out about your illness, tell them when the time comes you will let them know what they can do to help. Write down their name and contact info so if you (or someone helping you) needs a hand they can reach out to the people on your list. With an active 4 year old and a teenager, theres a million minor things that others can do to help. All the small things can add up to being overwhelming when you are sick and cant do everything you used to. If you have radiation you may need someone to help you get back and forth to the treatment facility. When feeling bad and taking strong pain meds driving a car isnt the best idea so if possible line up a couple drivers now. You can also call the American Cancer Society 24/7 ask about their volunteer driver program.

Read thru the posts here and also read and absorb the main OCF site. Theres tons of important info in both places. By learning about your illness, you will become a strong advocate for yourself. Ive included very important links to help you find important info.

You will also want to schedule a dentist appointment to get a good check up and you may need flouride trays made if you will be having rads. I think I remember reading you already went to the dentist. You should have a complete blood work done including thyroid levels (men also should have their testosterone levels done too). Its easy to take care of this now before treatments, but its impossible going backwards to get your baseline numbers after you have had treatments.

This is something I nag everyone about, their intake. This is one of the most important things you will learn, especially if you are going to have rads. So start now eating all your favorite foods, desserts too. You dont want to go into this having any cravings. With the surgery you are having it will likely affect your ability to eat, at least for a couple days, maybe weeks.



List of CCCs

OCF main pages... Financial Assistance

OCF main site --- DIAGNOSIS

OCF main site --- TREATMENT


I hope this info helps and isnt overwhelming. Stick with us and stop by often, we are here to help you get thru your upcoming adventure. We're one big family here and we welcome you just like you are a long lost relative. Hang in there!!!

Hi Andy,

You've come to the right place to vent, get ideas and in general - be supported in way that is hard to describe.

Use this time right now to get life in order and to EAT.

By in order I mean is your living room set up with a place for you to have a table or two very close so you can keep things you need handy, handy without have to get up. If you'll need to do some work, is there something you could arrange to be more convenient. Telling our loved ones has been hugely supportive as the want to bring food. Even if there is a time you aren't eating it, your family will.

My husband is 2/3's of the way through his treatment. You can do this too.

Very best of wishes to you.

Julie

Thank you both for your suggestions, kind words, and for responding quickly.
I'm more at peace and have put in several calls to get a second opinion. Will also call my dentist to get a cleaning & exam in and also get started on those trays.

One thing that gets me, that I failed to mention in my original post. Is that my ENT Doc went over my first CT from 2014 and said I should have been sent to a specialist then and we'd be doing the same thing we are now. I know the past is gone and I would definitely do things differently. So I'm upset and really needed to vent about that.

I'm worried that they don't have a stage. Yet hopeful as my chest CT came back clear. My diagnoses is Mucoepidermoid carcinomas, far from something that begins with E.. sigh

I've started going through this site. So grateful that it's here. Hubby and I are going to get away for a couple days so I can go eat some delicious food. Then we're planning on taking the kids away for several days after Christmas. My Mom is coming down to stay with me starting tomorrow. And I think Hubby will take all of January off.

Any suggestions on things that I should bring to the hospital and have at home?

I picked up a couple boxes of ultra soft tissue and lip balm
Several baskets of different size to hold various things. Also small ones for meds.
Gonna order a humidifier... I have a warm vaporizer, do you think that would be helpful?

Thanks again

Andy,

Welcome to the forum though I am sorry you needed to join in the first place.

The same oversight happened to my husband. He had really bad mouth sores, went to the ENT who told him it was nothing. Fast forward half a year, the mouth sores came back and the ENT said the only other patient he had had who had this happen turned out to have oral cancer. He referred John to the Otolaryngologist and our journey began. That's why I think ChristineB's advice to go see a doctor with experience with oral cancer is such good advice.

When you're getting supplies, make sure that the creams you get do not contain alcohol as it will sting. A vaporizer is useful as will a WaterPik, it will get rid of the gunk in your mouth in the most efficient way.

It may be helpful for you to have a tablet or iPad in the hospital. Some members have mentioned using a text to speech app on the iPad for the days immediately after surgery.

Hoping for the very best for you.

Its perfectly ok to vent! We understand what you are going thru. One of the best things about our site is the ability to have open, honest conversations without anyone knowing your identity. With OCF, you never have to worry about co-workers, neighbors or even family members learning about your medical condition from reading it on social media.

Its important to manage the pain most patients will have after such a major surgery. I found its best to make sure the pain is kept under control by asking the doc to prescribe 2 different pain meds. This way the patient can switch off and on, never having to wait until its the right time for their next dose.

The sooner you begin working with a speech pathologist the better. They will help you to learn how to best speak clearly after the surgery. You will have swelling that can take weeks to subside which can make you difficult to understand. It just takes practice and time before you are able to speak clearly. Theres also an Ipad app called "speak it" that can be your voice while you are adjusting after surgery. I had a close friend who used this for years, she found it very helpful especially for phone calls. Texting and dry erase boards can be helpful too.

I would suggest lining up helpers, as many as possible. You will want to have someone with you during your hospital stay and at least the first few weeks at home after the surgery. You may not be able to communicate very well immediately post surgery. You probably will also be hurting and pretty uncomfortable. Well meaning hospital staff will be in and out of your room, they will ask you questions expecting you to reply. Your speech may not be as understandable. By having someone there with you around the clock, they can be your voice. Also by lining up a few different people to stay with you, it will make it so much easier on everyone. Your caregivers can take a few hours to themselves while someone close to you takes a "shift" for a few hours.

Its not always easy for the mom to be the patient. Taking your little one out for a few hours can be a huge help when you first go home. Close friends and relatives can each pick a day of the week to be "the mom" and cook a homemade meal for your family. You may not be able to eat very well but your family still needs to have dinner. When cooking its not a big deal to make a few extra portions. That can get boxed up and dropped off at your home prior to dinner time. Your family can wash up the containers and place them on your porch for the cook to pick up the next day. Before surgery, give your oldest child jobs they are responsible for. This will help keep them busy and feeling useful. Theres a million little things that can be done to help you and your entire family. As you see, it takes a village...

Other than the helpful ideas already mentioned, my radiation center nurse sprayed my mouth out daily (debridement), usually after my radiation session with the fine mist spray machine, I think with saline, that was in the exam room. This greatly helped reduce mucocitis and thrush. Not every center may do this, so similar may be done with a Water-pic, but I don't think it's as good.

Good luck