I'm not sure what I'm doing or if I'm at the right place to seek help,assurence or to just to unload before I explode. My best friend (my Mom) who is 67 started having problems with her dentures a couple months ago. She decided to grind a little on them so it didn't cause as much pressure/pain. She was having pain shooting in her right ear canal and jaw. I suggested I buy her a new pair since she had had them so long. (Over 40 years). She was vain about prople seeing her without them in. One day, her top plate fell on her tongue and caused a bite. When the bite spot didn't seem to heal, she went to the Dr. and recieved antibiotics for an infection. When she stopped wearing both plates, I KNEW she had to be in pain. Long story short, after a trip and biopsy @ an oral surgeon, we learned she had "tongue" cancer stage 4. After being sent to a 2nd surgeon, and many tests later, she now has head and neck cancer. At first, surgery was suggested. The oral surgeon turned our case over to an ENT. From the info we have been given, the surgery she would have to have would include removing all down to the laranex (excuse my spelling please)and would be horrific. At this point, she has opted out of surgery. She has a hard time talking and can eat only soft foods. Mashed potato"s etc. and can't tolerate cold foods. They put in a pic tube Thursday so we can try and get her the needed nutrients via boost etc.
I AM SO SCARED!!!!!!!!!!!!!!My heart is constantly aching. She does seem to have a great team of Doctors. Chemo and radiation will begin soon. We had asked if this could be done closer to where she lives as I'm afraid it's going to be too hard on her (we are driving an hour each way per visit to get there). Was told if we want the standard chemo and radiation that would be fine BUT there is a clinical trial in phase 2 offered at the hospital we are currently at and the local one can't do it. At this point the way I understand it, that means standard treatment plus a possibility of better chances.
I have done endless hours of research on all this and from what I read, stage 4 cancer is the last stage, Can anyone tell me different? Or give me insight,hope or tell me that they have been through this and what to expect? Mom's identical twin had cancer (lung and lypoma) 2 years ago and passed away 2 months later after starting treatment. I REALLY TRY to keep my tears and fears at bay when I'm around her. I'm am staying with her during the week to transport her to and from and will be there on the weekends if needed. Thank God for FMLA! Does anyone have an opinon about clinical trials? And just think, this all started because (we thought) het dentures needed replaced thing her gums were shrinking due to age!!! Any insight would be GREATLY APPRECIATED
Dee

First of all, I am not a Dr, and can only tell you my novice opinion on these issues.

I am very sorry that this dreaded disease hsa touched your life.

The good news is that your Mom is realatively young and has a problably treatable cancer.

Today, oral cancer can be treated, and even though surgery is not practicle, it may have been a bad first choice anyway given the effectiveness of chemo and radiation treatments.

Regarding staging, try not to get too wrapped up in this part. For one thing, it is a complicated formula used to determine the Stage, and Stage IV oral cancer is not the same thing as Stage IV Melanoma, Lung Cancer, etc.

Why are you being told Stage IV? Did it spread to lymph nodes? other areas?

Has she had CT/PET scan(s) and what do these reveal?

The G Tube is fine, no big deal and can be easily removed once she has completed treatment and is feeling better...

Now, what was done to find out she had cancer? Was there a biopsy performed? When?

What were the results of the pathology report from the biopsy?

Also, one of the main things you will hear over and over on this forum is the importance of good medical care.

Don't be so concerned about proximity to where she lives, if you need to you could travel anywhere.

You really need to make sure the treatment choice is a COMPREHENSIVE CANCER CENTER, or at least a CANCER CENTER as designated by the NIH, NCCN.

What type of chemo is she getting? What type of radiation in what doses?

What trials is she considering? Has she looked into Erbitux?

Your pain, tears, and hearache are all normal and expected at this point...In fact, something might be wrong if you didn't have feelings like this. The good thing is that you are in the RIGHT PLACE to get help, guidance, and commiseration.

You can help your Mom get through this, and hopefully it will be just a minor bump in the road.

Also, just do you know, FMLA (for employers with more than 50 emloyees) allows for 18 weeks unpaid leave. I can't recall if legally a parent qualifies, but I'd be happy to email you links if you need them later.

Regarding the clinical trials, let us know more, and there are some topics under the "Currently in Treatment" board.

Good luck. Be strong. -- Michael

Dear Dee,
My husband Doug, who is 47 years old has also been recently been diagnosed with stage IV tongue cancer which has spread to both sides of his neck. He just finished radiation and chemo at the U of Michigan and will be having another biopsy in August. He is back to work one month after treatment and says he feels good. I know it is hard and it was very hard for me as well as I lost my brother to lung cancer within 3 mos of diagnosis a few years ago. Like Michael said, stay strong for her and from what I've been reading as well, and from all the wonderful people here, many people are winning the war against this dreaded disease. Take care and God Bless you and your mom
Sincerely,
Virginia
Wife to Doug Stage IV Base of tongue cancer, T4N2cM0

Dee,I believe your being there for your MOM is as vital to her recovery as a team of doctors is. If you don't have the book "Chicken Soup for the Surviving Soul" find it and read it with your MOM.
Speaking personally here, I have tried to learn all I could about H&N cancer since my husband's diagnosis and have finally concluded that I can't understand in 3 or 4 months what it has taken the specialists yrs of schooling to understand. You said above that your MOM has a good team working with her. You are gonna need to put your faith in them, listen well, ask questions when you need to and Be there when your MOM needs you the most. The folks here will support you as best we can. Amy

After the replies I received yesterday, I actually almost slept a full night THANK YOU! I don't feel as alone as I did!
michaelii: Most of our documents are at my Moms in Illonis but I'll see if I can recall the info you asked about. The 1st oral surgeon in Danville did the biopsy (sent to Indianapolis). Results were positive for Squamous Cell Carcinoma. referred us to an oral/maxillofacial surgeon in Champaign Il. He was unable to look under the tongue due to the extreme pain it caused her and said they would have to schedule to put her to sleep to look under the tonge. Her tongue doesn't come out straight, it pulls to the side of the tumor. He sent for the biopsy slide from previous oral surg. This is the point where we were told it was stage 3-4. An X-ray of head and neck was took. By the time we got home that day a message was left that we had an appointment with an Otolarynglolgy/head and neck surgeon (ENT). She had a Cat scan, MRI,blood work.
Went to the ENT on a Friday and he didn't want to waste time and scheduled the minor surgery to look under the tongue for the next Monday. He also informed us that she had been discussed at the tumor board and the case was being transferred to him but the oral sugeon will still be part of the TEAM. They feel the cancer started lower in the throat and traveled up the tongue. the cancer is growing into her nerves in the one side and that is part of the exteme pain. A chest x-ray was also took. 2-4 lymph nodes are effected. At the follow up appointment,It was agreed by all that surgery will not be done. The clinical trial was brought to our attention. At first it felt like they were asking her to be a ginny pig (I'm over that now) We have since met with Hematology-medical oncology, Radiation Oncology. As far as the Erbitux, I THINK that is the trial drug they are talking about, do you know anything about it? Plus I rememeber Cisplatin being spoke about.
She is being treated at the Carle Foundation/ Carle Cancer Center in Urbana and I have been told it is a nationally reconized Cancer Center -CCOP-Their web site states they are community clinical oncology, are linked directly with National cancer institutes research endeavors. But not really sure what all that means ....any input? We have a "treatment plan" at Moms. I just can't remember the doses etc. And again, I REALLY APPRECIATE the feedback....Dee

Hello Dee, If up to me I would travel to get the best care possible. If she can get Erbitux, it seems to be very promising.

If she is being seen by good doctors you can worry less about the various tests and results you have listed. Trust the professional help to know. I am sorry that this has advanced as far as it has before she was properly diagnosed.

Pain control is something you can insist they work on. Be wary that Morphine can cause some strange side effects. Search here for other pain management drug options.

Take care

It sounds as though we have a major thing in common-the Love of our parent who is suffering. I just want you to know that with time, you will develop a sense of strength and courage. I also want you to know that some days are HELL (it's normal) and some days there is light!! Take this ONE DAY AT A TIME. Half of the battle is training yourself to live in the present moment.
I met a man who is a 5+ year survivor of the exact scenario you describe- he is alive and well. I noticed he had a speaking device and because of my exposure to this I approached him. We spoke for an hour and ended up hugging. He is a miracle and I MET HIM. Come here, there are many miracles. I am so SORRY about your pain. I feel it, I know it. It is the worst to see suffering, isn't it?

Once again, I feel encouraged about the input I get here. No matter have rough it's getting, I feel strength within this site.
ShawnaMargo: your right, the worst thing is seeing the suffering.
And Mark, you too are right, I wish I'd never heard what "stage" this was because I find my self dwelling on that way too often!
I'm noticing Mom's getting weaker by the day, and she hasn't even began treatment. I don't know if it's the cancer, medication for pain, or the lack of food. However! we are up to putting 5 cans of boost in the peg tube as she slowly eats less. I asked about something for oral care @ the oncology appointment on Tue. and was told when radiation begins, she'll be given something. I wasn't happy about this response and went to several other people within the clinic {she can't wear her dentures and can't talk well let alone brush her mouth}. By the time I was done, I did manage to get a spray called PREVENTION. It contains NO ALCOHOL and it is an ANTIBACTERIAL mouth rinse. It REALLY helped with the mouth odor.She was reluctant to use it at first {didn't want more pain, (bless her heart) but after using it, she said it caused NO pain and made her mouth feel alot more fresh and clean. We get to spend the day at the hospital today for many tests. They are trying to get everything completed in a hurry to begin chemo to hopefully shrink the tumor on the tongue. I just pray she regains some of her strength before that begins!! I pray for all of you as well as her. God Bless all of you!

Dee, two of the most valuable pieces of information I have learned from this site are 1. to Always Ask or Demand, as the case may be, explainations for things you do not understand.and 2. Insist that pain be recognized and controlled. You are your Mother's primary advocate right now. Be as strong as you can be for her. I hope you can find ways to also take care of yourself during this. That is really important too. Amy

Don't forget the Biotene products like their mouth wash, and oral balance all which have natural occuring enzymes just like saliva in them to reduce bacteria which cause odor and gingival problems. Biotene has no alcohol and has glycerin in it to moisten the mucous membranes. They have a new oral spray and a liquid in a squirt bottle that you can carry around in your pocket, just now being introduced that tastes like bannanas...which I really like and helps me a great deal. Lastly, they have an ultra soft tooth brush that is extremely gentle.