Carol,
I'm so sorry, you've been through a lot already. It can take a few days sometimes for people to get online and read the board. Don't loose heart, you are in the right place for compassion, and as many answers as possible. There are a few people that I can think of that could help more than others, one is JulieKay, who lost her husband Rich who chose no treatment. I understand your fear, and that you are heart broken. This is a scary situation for you and your mom. There may be ways, if it is a tumor, to shrink it without causing her a lot of problems. Many folks here would say, it isn't cancer until the doctors say it is. You're doing the right thing by researching and learning all you can, and by reaching out. Please give the folks here a chance to read and respond, they surely will. Fear of the unknown is the worst, I hope you get your answers and comfort you need to make peace with whatever you are facing.

Hi Carol,
I am going to be of no help at this point, but wanted you to know I care and will keep you and your mom in my thoughts. I have been receeving some messages from other members telling me that they PM'd me but they never came through...that normally doesn't happen here. I'm sure that now that it is Monday, you'll be getting more responses.
All the best,
Donna

Carol,
I think one of the reasons you are not getting too many responses is very few people choose that option and most of their caregivers leave the board after it is over. Thus if you are PMing them, they may never see it, nor can one reply to a PM without signing onto the board. Better you should email them.

There is a thread called 'Refused all Treatment' by Paul R, who happens to be my boss, in the Anger and Coping section page 4. I now see that Liz emailed it to you. Paul has rarely been on the board since his mother died so do not PM him. However, you might try emailing him and I think he will respond. His Mom was only 71 when diagnosed, had several other medical issues, but was a fiesty lady to the end. She lived a year and 1/4 and went quickly at the end. Most are not that lucky from what I read on the board. There are other stories of the final days in the blog sections. Read Liz's, Amy's, Rosie's,and I believe Rick's. While these peoples relatives did not refuse treatement, they did not make it.

Keep us posted on what the dr says and do lots of reading on the board.

Take care,
Eileen

Ditto to what Jeff and Donna said.

There are things that can be done to slow progression/provide relief. Even radiation can be used that way without getting into all the problems that you get when you are treated in the curative mode which is what you have been reading on these boards.
What is feasible, makes sense and/or can be tolerated by your mother has to be evaluated by your team.
Hopefully, you will hear from GC that have experience with palliative treatment. (If that is what makes sense).

I wished I could help more....

Markus

Hi Carol,
I am not sure if or how I can answer any of your questions, but I can share with you the similar experience I went through. My mom, at the age of 71, passed away from oral cancer in November 2006. She was diagnosed in February 2006, had almost half of her tongue removed in March 2006, and went through only radiation in the summer. After radiation treatment she had a lot of problems with mucous and thrush. What we didn't know was that the cancer went to the other side of her tongue, down her neck, and who knows else where. Towards the end of October one day she had serious problems breathing as her throat became swollen so we had her taken to ER. They ended up putting a trach tube in her so she could breath, and they told else the cancer has spread and she is terminal with less than 6 months. BIG shock to us. We made plans to move her to a Hospice where we believe she received the best care possible. They gave her drugs to clear up the mucous and ease her pain. I was holding her hand when she went very peacefully. She passed away 10 days after going to the ER. We believe the Hospice made her very comfortable.

It is a very difficult subject for me to talk about because it is like I am reliving it, and I also was diagnosed with oral cancer in 2007. Right now I am 6 months post treatment with everything clear. I do understand the pain and anxiety you are going through, and will try to help as much as possible.

Without knowing the cause of the swelling in your mom's throat, it is hard to say what will happen. I would think for now what ever the case they would keep her comfortable.

Please update us with more information after the Drs. visit on Tuesay, and I think you will get more responses.

Carol:

Im sorry, I do not have experience going thru what you are asking. I just wanted to say I feel badly that you are going thru this. I cant begin to image the internal turmoil you must be feeling. Please keep posting, there are many on here who can help by giving you emotional support.

Hello all

Thank you all for replying, it was very nice and very helpful.

Liz,
I read your blog last night til 2am, amazing, I had tears running freely down my face throughout most of it. I can't even put into words how I felt reading it. It was good, it was sad, it was uplifting and depressing, it was everything.

I also read Paul R as you suggested today and there were lots of insights for me.

I will get back to you all when we know more, I feel better, but I need to take mom to the dentist now, her front cap popped off and she looks like the toothless wonder.......

Talk to you soon and thank you all so much

Carol

Carol,
Is was Rich's Plea in the blog section, not Ricks.

Eileen

Hello to all,
Thank you for your concern, I appreciate it. I do have questions here at the end of my update, so if you have an opinion, I would be grateful to hear it. I have not listed any specifics previously because I wasn't sure what mom's problems were, but we went to the emt today (tumor specialist). After examining the cat scan and her personally (without a biopsy), he said she had a SCC (Squamous Cell Carinoma) at the base of her tongue which was mid-range in size. He did not see that it had metastasized to her lymph nodes, but was not sure. He did see some spots on her lungs. I personally believe that the spots on her lungs were already there. (emphysema) He has set her up for a pet scan to determine if she is cancerous elsewhere. Mind you, I have not shared with mom the information that I have gleaned from those of you on this website. We discussed various treatments, of which I told him that surgery and chemo was out of the question - she would not survive the treatment and her remaining life would be miserable, he agreed 100 percent. We discussed radiation treatment... and I expressed my concerns about the burn and blistering of the throat, the damage to the salivary glands and the possibility of having to pull her teeth to avoid infection. He suggested that there have been recent cases in which very low doses of radiation have slowed the growth of the cancer and in a very few (rare), disposed of it. He also said that he would not recommend radiation (even low dose) without the radiologist suggesting that she was a viable candidate for such treatment and therefore would set up the appt to see the radiologist. If the radiologist says that she is a viable candidate for this then we would need to get a biopsy. I know a biopsy is normal for most people, however it is not for mom... here is a partial (because I don't know all that she has or what the past is} of her medical problems--She has or is:
legally blind due to torn retina caused by the arthritis
asthma
copd
mild emphasema
severe arthritis (which is crippling without meds)
mild strokes (for which she take blood thinners)
weak heart
vertigo
high blood pressure
irregular heart beat
I am sure there are many more, I just can't think of them at the moment and she is physically weak. I whip out the wheelchair if we need to walk more than 200 feet - because she needs to rest.
She is on medications for all of these. Her heart has stopped on the surgery table before, it is difficult to get her back after being anesthetized.... not a good thing.
A biopsy for mom is surgery, which means that she needs to NOT take her blood thinners. Hazardous... but acceptable
The emt said he would do the biopsy if the radiologist said that she was viable for the low dose of radiation, otherwise it was not necessary because the outcome will be the same - death. He wasn't blunt like this, but I was pulling teeth. He also said that he would like to insert the trachea and PEG while she was still healthy enough. He needed her to be able to go off the blood thinners for 5 days and would schedule both procedures to be done so that she would only have to go off the meds the one time. He did not explicitly say, but the inference was that if she did not get the trachea she would suffocate. He suggested that both would be for her future comfort and she did not need to use them until the actual need arose. I am assuming from this that her throat is closing from the cancer and if another avenue is not provided she will slowly suffocate from lack of air. The PEG is so that she will be able to receive the benefits of nutrition and medications (I assume mainly for pain management). Mom understood that she had cancer and was going to die, but she was looking dumbfounded as we discussed the tubes and meds and feeding and what was so not acceptable to me. This particular cancer to me really is "SO NOT ACCEPTABLE". We cried together before going to bed, kind of....she has no tear ducts due to previous surgeries so she can't physically cry.
I would like some opinions please on what you think about placing the trachea and PEG tube at this stage? Some of you never had one or the other, let alone both, what do you make of this? Do you think this is reasonable or advisable? Any opinions here are appreciated.
Thanks again
Carol

Carol,
My heart goes out to you. It seems to me that the doctor's suggestion is wise. He is saying that IF the radiologist agrees that it would not be harmful, the low dose radiation would provide relief for your mother. The trach tube and PEG are not pleasant to see but as someone who had both for a while I saw them as alternative means of the basic functions of life, breathing and eating. Instead of guessing and worrying, ask the doctor why he is recommending them.
You have not mentioned her primary doctor. I would certainly recommend getting his opinion as well as that of any other physicians she is seeing. Ask the ENT to forward results of his diagnosis and the CT and PET scans to them for their records.
Until the results are in you really are in limbo. You are making assumptions based on fear and love of your mother. Is there anyone you can talk to whose judgement you trust to help you through this.
My prayers for your mother and for you.
Malka