Hello everyone,
I'm a 41 yr old mother of two who's mom was diagnosed last friday (july 27) with oral cancer. She noticed a painful lump in her gums about two or three months ago and has been bugging doctors ever since. She had three different biopsies done on the area over the last few months and had to call and call and call and keep bugging doctors because she knew in her heart it was cancer (smoking 50+ years).

The diagnosis was not too much of a surprise to any of us but the news is still overwhelmingly devastating to hear.

I have a few issues I have already become very anxious about especially after doing extensive reading on this board for the past week or so.

I am getting a fairly clear picture of the suffering that people with oral cancers go through and it's already breaking my heart to imagine my mom going through all that.

My mother lives with my husband, me and our two children 10 an 2.

My 10 year old daughter is so so close to grandma and i'm not sure how to tell her without breaking down completely.

I don't want my kids to witness the terrible suffering their grandma may go through but seeing as mom lives with us and I am a stay at home mom I will also be her primary care giver (my dad and her are separated for many years).

These are just a few of the heartbreaking things that have went through my mind so far and I'm sure I'll have many, many questions and complaints over the coming months.

It's nice to have a place to come to express these feelings. I find that I can organize my thoughts and not get too emotional by writing things instead of talking to people. Whenever I try to talk to anyone about this (sisters, friends, husband) I break down completely.

Thanks for listening.

Jackie

Hi Jackie,

I'm so sorry your mom has cancer. Although, it is good to know she is living with a great support team.

Are you working with or already planning to go to a Cancer Center with an oral cancer specialty? How frustrating that you have been waiting so long to get biopsy results.

When my husband was diagnosed by his ENT, the ENT wanted to do surgery within 2 days and then he wanted us to find our own chemo and radiation drs. post surgery.

Fortunately, our family doctor referred us to a cancer center where an ENT surgeon, a chemo doctor and a radiation doctor all reviewed his case and they jointly determined a course of treatment. And, they are all working together within one facility.

I sometimes think about how much harder this would have been if we went the route our ENT suggested.

I have 2 kids (ages 13 and 12) and their dad has base of tongue cancer and he has 4 RT treatments and 1 chemo treatment left.

As far as talking to your daughter, I was surprised at how well my kids took the news. Initially, they were sad and concerned. However, our treatment team believes my husband will be a survivor, so we have always stayed optimistic in my husband's ultimate outcome.

And, they have had a chance to meet the doctor's and nurses on my husband's team. Both of my kids were made aware that his treatment team was going to make him very sick in an effort to kill the cancer...and, then he would get better again.

And, they have seen me break down and cry more times than I can count this summer. I, too, believe in my husband's recovery. It's just hard to see anyone go through these treatments.

It's surprising how resilient and optimistic kids are. They are handling this really well...I would say better than I am on most days. :-)

I look forward to hearing more about your mom's treatment plan. It took about a month from the diagnosis to get him assessed and set up for a treatment plan. That was a hard month...my best advice there is take a notebook or a tape recorder to every appointment. There is just so much information...and, for me (a very non-medical person) it was very overwhelming.

Now, it isn't so overwhelming...and, I am becoming better with the terminology. And, I am able to see clearly that this is just one lousy, concentrated short time of life.

The kids and I spend a lot of time saying "this time next year we will be doing...." Because, we look forward to this being a memory next summer instead of the reality it is now.

Wishing you and your mom the best,

Hi Margaret,
Thanks for the reply and words of encouragement.

We were notified today that she has an appointment at the Hamilton Regional Cancer Centre this friday (about 45 minutes away)...so yes, a team from there will be treating her.

They said she would be there most of the morning so I'm curious as to what will happen. She hasn't had a CT scan or anything else done yet (appointment next Thursday) so maybe you or someone else here might have some idea of what this initial appointment will involve.

Also I am open to suggestions for any questions I might ask. I want to write everything down and try to come away with as much info as possible.

My gut feeling is that her cancer is fairly well advanced and they will try radical treatment...but that's not based on any facts so I might be given more positive news in the coming weeks.

All the best to you and your family in your husbands treatment.

Jackie

Jackie: Welcome to the forum....Where is her cancer, beneath a tooth? Is it Squamous Cell?
Read my last posts for encouragement...husband is 76, not even two weeks past surgery and is doing marvelously well! Keep your chin up and keep us posted! Lois & Buzz in NC

Jackie,

Sorry to hear that your mom has oral cancer. It's great that she will be treated at a cancer center. Once she has been seen and you can post more details as to the staging of her cancer, as well as the treatment plan that she has been given, you can post these things and you will surely hear from members that have been in similar situations.

I might suggest that you try to have someone else with you at the appointments to help with the note taking. It can be a little overwhelming and you might be distracted trying to listen, take notes and ask questions, all at the same time.

Good luck on Friday.

Jerry

Hi Jackie,

She is going to the Cancer Center this week and getting a CT next week?

In our situation, before my husband was seen by the cancer docs, he had a CT and a full body Pet Scan done.

The CT scan will let the docs know if there is any nodal involvement and the Pet Scan is to help them assess if there is cancer anywhere else beyond the biopsied area.

Without this info, I do not know how much they can do at the first appointment. Do you have the names of the cancer docs she will see on Friday? If I were you, I'd call and talk to the docs themselves or their assistants or nurse practitioners to make sure they know you don't have the scans in hand. They might be able to help expedite the scans which should expedite the treatment plan.

Although keep in mind, I am only speaking from my experience with my husband...I have only gone through this one time (thankfully). Others might have had different experiences.

I am glad your mom is being treated at a Cancer Center.

I'm assuming that her biopsy showed she has SCC (squamous cell cancer)...did they tell you if it was well differentiated or poorly differentiated?

A good Cancer Center should have a tumor board that meets to discuss treatment plans for each individual patient. At a minimum, the tumor board would include a surgeon, a Radiation Doc and a Chemo doc.

I am not a medical person. So, from a layman's perspective there seem to be 3 options with Oral Cancer...the option(s) your treatment team presents to you will be based on your mom's specific situation.

1) Surgery only--if the area removed shows clean margins around it (no cancer cells).

2) Chemo and Radiation. Generally Cisplatin or carboplatin...sometimes Erbitux...along with 6 or 7 weeks of daily radiation. In some situations, like my husband's, this could elevate the need for surgery...and in others, this type of treatment will shrink a large tumor down before surgery. Although, my understanding is that surgery post radiation has some extra difficulties associated with it as the radiation is hard on the tissues and muscles.

3) Sometimes people need a surgery...and, then without clean margins they have to do chemo and radiation afterwards.

I think in the past, places would do radiaiton treatments without chemo. But, you would never do chemo without radiation as they haven't figured out a chemo that will truly kill these kind of cancer cells without the assist of radiation.

This probably all sounds scary, and it is. But, it is do-able. And, as you can tell many people on this forum have gone through the treatments above and are living full and productive lives.

At your first appointment, if your mom is in pain, make sure that they know this. No one should be in a lot of pain prior to or during treatments.

And, if your mom has anxiety or depression over this, get something for that too.

Depending on the comprehensive nature of your cancer center, they may discuss dental work with you or you may need to make a separate dental appointment. On occasion, some people need to have some teeth removed as part of their treatment plan...(my husband did not). If Radiation is going to be part of the treatment mix, you will want to consult with a dentist regarding fluoride treatments or trays too.

They may get into discussions of things like feeding tubes and/or Pic lines or ports. While my husband has neither, there are days I wished he had both!

I hope this helps.

Why do you have the gut feeling the cancer is advanced? Do you know if she has any swollen lymph glands?

It's really hard not to think the worst possible scenario when you are first dealt the "C" card. But, it is possible that your mom's cancer was caught early.

I wish you and your mom the best too, I look forward to hearing more about the upcoming appointments.

Hi Jackie

Jerry is right. Take someone else with you to the appointments if you can. My Mom and I went with my Dad, and we all three picked up on different things that were said.

Right now you are still reeling from your Moms diagnosis. It was just a few months ago that I was in your same position. What you are feeling is normal. The key will be to get as much information as you can and ask tons of questions. I found for every answer that I got I had another question.

My Dads first doctors visit consisted of us meeting the surgeon, an examination of his mouth and then he had his nose scoped so they could see if the cancer had spread to his sinuses yet. He didn't have his CT scan until a few days after that. Everyone's first doctors appointment is different - it just depends on where their symptoms are.

Out here you will find a lot of support and encouragement from people who have walked down this path before you. Hang in there. You are not alone.

Joy

Wow!! Thanks to everyone for all the input. I will try to answer some of the questions.

She wears dentures and has felt them rubbing on something for many months.

You can see a visible swelling in her neck under her ear.

She is in quite a bit of pain already and I made her call her primary care physician on monday to get something (Tylenol #3 for now)

I did not go with her to her appointment last week. She snuck out of the house and took a taxi while I was in the shower...didn't want to bother me she said?!?!!

I called my sister once I found out she was going there alone and my sister met her there. Both mom and sister said alot of "I don't know" when I asked them about type and stage and location. That's why I want to make sure I'm there this friday to ask some questions.

I too thought it was odd that they would want to see her before the CT scan. Perhaps it would be a good idea for me to look into this tomorrow. Thanks for the suggestion.

I'm sure this first month or so is going to be pretty overwhelming and like they say there is strength in numbers.

You guys don't know how calming this is for me to be able to rationally discuss some of these issues.

My sisters are so upset they can't even drive my mom to the cancer centre on friday...my brother is blind since the age of three due to cancer with a relapse last year and i'm not sure if my dad even knows yet.

I must go put the kids to bed now but thanks again for all the caring.

Jackie

Jackie, You might need to tell your Mom that it is imperative that you and or another family member be at all of these appointments. As her primary caregiver, you will need to stay on top of everything that is going on. Get that note book ready! You will want to write down terms and medical jargon to bring home to research, the names and ph # of all of her medical team, etc. I always took a calendar with day blocks large enough to write in to every appointment. I also had other important dates [family stuff] filled in. That way I knew a month or so ahead what our days were obligated to. One thing a caregiver needs to be is get very organized.I'm glad your Mom is there with you. Amy in the Ozarks

Jackie:

Im sorry for you and your family to be going thru this. Its very difficult, I know Im going thru it also. You will need a notebook and I take every doctor's card and staple it to the inside cover of the notebook. You will also need a calander to write down doctor appointments. I have 7 doctors and also my family physician. Kind of hard to keep them all straight w/ out the calander and business cards. There will be alot of appointments and tests done to see what stage she is. This will be determined thru the PET scan. She will also have an MRI, CAT, scan blood work, she will to see a dentist too, even with her dentures, he will make sure of the fittings. Ask your dentist for magic mouthwash, it will bring her great comfort. Its 30% each of benadryl, lidocaine, and malox. Your mother is very lucky you are there to help her. I wish you both the very best of luck.