Hello to All:
Months ago my mother started talking funny and not being able to eat regular food. She was only drinking milkshakes and stuff and we kept asking her what was wrong but she told us it was nothing. She finally told my dad that she thought she needed new dentures, so he took her to the dentist to get a new set. That is when things became clear that something was wrong. The dentist wouldn't touch her and immediately referred her to an oral surgeon for a biopsy. The biopsy came back malignant, and the oral surgeon sent her to Virginia Mason Cancer Center for a consult with the best doctor available in our state. She had a CT scan with contrast done and the results were devastating. Almost her entire tongue is cancerous, And many lymph nodes in her neck have already been infiltrated with cancer so if she were to go with surgery as a treatment she would have to have her whole entire tongue removed. My mother only weighs 84 pounds and has some heart issues, so chemotherapy and radiation are really out of the picture as well right now. Needless to say I burst into tears in the doctors office and we went home to think about what the proper course of action would be. My mother has decided that she wants to do nothing, which means hospice is our only option.
I guess my question to anyone here on the board would be:

Has anyone ever experienced anyone dying of oral cancer of the tongue? The doctor explained that she would basically asphyxiate on her own spit, and that seems like it would horrible death to me. Has anyone dealt with hospice and oral cancer that could give me some feedback on how they deal with the disease and managing pain and the struggle of losing the ability to swallow and all the horribleness that goes along with that?
Any type of feedback would be appreciated!

Thank you so much for this for this forum and the ability to reach out for help in this desperate time of need for me. My father is also dying of stage 4 colon cancer. He stopped his treatments in July and was given only six months to live as he has many tumors in his liver and his liver will certainly shut down at some point. Right now I'm not quite sure who is going to die first, so I'm walking kind of a tight rope but planning on having them both at home for hospice.
Thank you so much for the opportunity to tell my story.
Shayne B.

Shayne,

You have good reason for your heart to be breaking. Both parents with advanced cancer is almost too much to bear. I am so sorry.

While we see a lot of people on this board who have really good outcomes after treatment for oral cancer, we also have seen, way too frequently, people die of this disease. I will let those who have experienced it first hand with a family member chime in here with more information. Everyone has a slightly different experince with advanced oral cancer so we cannot be exact in telling you the path the cancer takes to ultimately kill someone. I do think that hospice will be a huge help for you.

You should hear from a lot of us in the next 24 hours and I hope we all can be a support to you in this awful time.

Hugs,

Deb

Shayne, I'm so very sorry to read all this. My thoughts are with you and your parents. Like Deb, I'll let the people familiar with hospice answer your questions about it.

Just to play the optimist for a moment... there are a number of people here who have had the kind of surgery recommended for your mother. I know it's tough, and with lymph node involvement she would need a neck dissection as well. Is this something you've absolutely dismissed? Yes, afterward radiation and likely chemo are also in the cards, although you say your mother could not tolerate it. I'm going to figure a cardiologist has ruled that out for her (?)

At any event, we're all here to support you in every way we can. It's a tough burden being placed on you. Be strong for them and we'll be strong for you.

Hi Shayne,
I am so sorry for this devastating news. I am caretaker to my Mom who is 88. I cannot even imagine her going through this. For your Mom to be this advanced she has been dealing with this for a long time. What an amazing woman, probably being the rock for your dad the whole time.
I, too, don't have experience with hospice so will leave that open, but just wanted to let you know you will be in our prayers. Please know we are here for you when you need to vent, scream, cry, whatever.
Blessings,
Kathy

Shayne, welcome to OCF! I am so sorry to read your post! What terrible news not just for your mother but also your father. This must be extremely difficult for you! I hope you have a good support system as you will need help getting thru this. Many caregivers will seek out therapists and take anxiety medications to help them thru the rough times. Of course we are here to lean on as well.

Dying of oral cancer is not an easy death. I would suggest getting hospice involved as soon as you can to help. Its not too early to call them for some guidance. This may not be relevant and I apologize if it sounds ridiculous to you but have you tried to take your mother for a second opinion at one of the countries top cancer centers? If you would like the list please let me know and I will post it for you.

Shayne,

My mom passed away a few years ago from oral cancer. She was 51 when she passed away. She, too, went to the dentist because she felt something on her tongue that she thought was an ulcer, but it started to hurt her real bad. He sent her to an oral surgeon who did a biopsy and found cancer on her tongue. She went through the surgery in January, 2008. She had part of her tongue removed and lymph nodes in her neck removed. She went through radiation. They were about to start chemo, but my mom looked so bad and she was so skinny from not being able to eat, she couldn't swallow her own salava, nothing. I got a call on July 1, 2008 (SIX months after her surgery) saying to come to the hospital because my Mom was not going to make it. SO SAD! She was in so much pain, looking like a totally different person, and all I wanted to do was hold her and just cry. I just could not believe how fast this cancer took her life. They said her throat was so swollen that she was only breathing through a pin sized hole. So they gave her lots of morphine and made her comfortable. Here I am almost 5 years later and it is still hard. I wish you the best of luck. Stay strong, as strong as possible. And I am here to answer any question for you.

Just wanted to update quickly, that after doing very well on Hospice since early January - my mother has taken an incredible turn for the worse. Thankfully, my brother just happened to come visit from New Jersey (primarily to visit my dad, who is also terminal and was expected to die first).
In a matter of a day she went from looking thin to skeletal, and now she is confused and too weak to even stand up to make it to the bathroom. Her hospice nurse says she is very close to dying.
From everything I have read, this is not normal. There is supposed to be a process... She asked for food and coffee this morning, yet she seems like she could take her last breath anytime. She smiles one minute and then moans with frustration about not being able to get up and use the toilet. We found her on the floor twice last night in the bathroom, because we didn't hear her get up and try and go. I'm sleeping with her in bed tonight with one eye open to make sure that doesn't happen again.
My dad isn't dealing with it well at all. Hospice does not have an in house center here, but he says she can't stay here because she's too much for him and I to handle (I personally think he doesn't want to see her this way, so out of sight - out of mind), but I don't want her going anywhere!!!
Has anyone else experienced this strange set of "dying" symptoms?
My brother is supposed to fly home tomorrow, but if we knew for sure she is going to go soon he would stay.
This is soooo hard. And this cancer is the fastest growing cancer I've ever seen in my life! She has been drinking a lot of nutrients throughout these past months, and she looks like a particularly underfed holocaust survivor...
Those of you that pray - please pray for a comfortable transition for her from this life to eternity. Her name is Doris, and she is very loved by her friends and family....
Thanks so much,
Shayne B,

Shayne, Im very sorry to hear about what your mother is going thru. Im sure it is very hard for you and your family. Im sorry but I do not know the stages of dying. But, I do know everyone is different and responds to things in their own way. It could be that this is how your mother handles her journey to the next phase.

Wishing you and your family strength during this difficult time.

Shane this is very normal. Unfortunately I lost a friend to cancer earlier this year. And sadly she was aware to the end, tough very tired as her body was shutting down. I would tell your brother to stay if at all possible, it sounds like the nurse is right. Usually a drastic change like that tells us its time for her to go and generally it happens within a few days. I'm surprised there is no in house hospice available, is she on medication for pain? The confusion is normal as she's likely not getting any nutrition and minimal fluids unless she has an IV. God bless.

Shane,

My elderly father died recently (after a stroke rather than oral cancer) but he was under hospice care. He did stop eating but would sip a little water and died within a week of stopping eating. He became agitated and confused at times and I have known this to happen to others as they neared the end. He did receive anti-anxiety medicine when he became agitated and that helped a lot and helped his loved ones as his agitation was distressing. My thoughts are with you as I cannot even imagine how difficult it is for you to have both parents in the dying process.