Hello all,

My mother has been diagnosed with Stage 2-3 tongue cancer , squamous cell carcinoma. Two doctors have been consulted and both agree on Dx and Tx: right side glossectomy plus reconstruction plus radiotherapy. In addition, all neck lymph nodes must be removed because the 4 cm tumor is close to the mid-line of the tongue and could have spread to both sides of the neck. My mother is diabetic and is 80 years old. She used to smoke 1-2 packs but quit 20 years ago. HPV is being tested for but it is not likely a HPV cancer.

My mother doesn't want to go ahead with the surgery. She prefers to live 1-2 years in her current condition than maybe 5 years with disabilities (loss of speech, feed tube, etc). Currently she looks healthy and has only minor pain in the tongue when she eats certain foods. The doctor said that rad and chemo can be given in attempt to slow the cancer in addition to palliative care if no surgery is done. Both doctors that have been consulted recommend that she has the surgery but she is not willing to do so.

I am trying to inform myself on the outcome of both options so I can relay this information to her. I want her to have a clear picture of what is going to happen if she doesn't have the surgery. These are some of the questions I have: Will the cancer inevitable evolve to the point it is going to be more painful than the surgery? This is one of my fears. She might regret not doing the surgery after the cancer starts to spread further.

Are there any survivors that were diagnosed at 80 years old and lived up to 5 years or more?

She told me her diagnosis just 4 days ago when I went to visit for her birthday. She has known about this for one month, although the second option was given just 10 days ago. I already went to talk with her doctor but I am only learning about this disease. Any suggestion, explanation, advise from the group would be very useful and very much appreciated. In particular any advise that can help her make the correct decision regarding the surgery.

Bruno

This is not a cancer you want to die from, it is a very painful and ugly way to go. Open fistulas draining pus and other liquid debris from the decaying tissues in your face, inability to talk, eat, and more. Opiate pain meds will make her non communicative and non lucid towards the end. Metastasis, if you are lucky, to brain or other vital organ that finally kills you, and the pain and consequences of a distant cancer added to the equation. Stage 2-3 tongue cancer is very survivable. There is no guarantee that she would make it 2 years and certainly not at the current level of quality of life without treatment. You need to convince her this is a bad idea if you can, though ultimately it is going to be her decision.

The problem will be when it gets so bad that someone decides they have made the wrong decision (not to treat), it is too late for any treatments to be effective.

Palliative care will be pain management, chemo will barely put a dent in it without radiation to go with it, and of course Cisplatin or some chemo like it will make her so sick that she will have no quality of life. Things will not stay the way they are today. She needs to understand that. At least the discomfort of the treatments has a positive outcome for most, particularly stage 2 patients. She will have worse discomfort and no future if she follows through with this choice.

I'm am sorry about the blunt and graphic description I have provided you which is all true. But I felt it necessary to state it clearly so that the idea that the next two years would be pleasant would not be her thinking, as that is not reasonable to expect.

Hi Bruno,

Please print out Brian's response and have your mother read it.
You may want to look around the forum and print out copies of other posts for you mother to read that support getting her on board with full treatment. Reading these posts may help change her mind.

There are people here who would have happily traded theirs for a stage 2 or 3 cancer. Your mother has a wonderful opportunity to survive it and to spare herself an awful death. Please, urge her to reconsider her decision.

Bruno - I'm so sorry to hear about your mother's not wanting to go ahead with treatment. You say that "She prefers to live 1-2 years in her current condition" - but without treatment, the pain she is having now will only get worse and and could worsen rapidly and with all the other complications that Brian mentioned above. My son also had pain associated with the SCC under his tongue and it was only when the pain got so bad that he finally went to the doctor. Since often, there is no pain associated with this cancer, it was lucky for him it did because that's what decided him to go for treatment. The doctors told my son the pain was caused by the cancer being wrapped around a nerve. How sad it must be for you and for all those who love your Mom to see her giving up this way when survival is such a real possibility! Please try to impress on her how her refusal for treatment, will affect not only her quality of life, but it will affect all those around her who love her and care about her. I don't know how I would have survived as my son's caregiver if he had not decided to fight this horrible cancer. My heart goes out to you, Bruno - and to your Mom. I hope that she will re-think her decision. Please stay with us and let us know how your Mom and you are doing.

We don't normally see patients as you describe survive 1 year much less 1 to 2 and as Brian pointed out it goes down hill quickly and death is welcomed when it finally comes. There are tons of patients still living and glad they are that had the same surgery your Mom is facing. A decision can not be put off because this cancer will not wait and very soon she will cross the point of no decision available.

Hi there everything said above here is true. I had stage 2 tongue cancer. While I'm younger and the surgery was no walk in the park, within a month I was feeling good. At week 2 I went away to mexico. This was after a 14 hour surgery and a trache. I had a few bandages but I felt good enough to eat at the buffet. Mostly it was soft foods but it was okay. Now as I said I'm younger so it may take her longer to hit that point and train her tongue. But she could very well get here. After that sh should be okay - I had radiation and chemo, because I had a few things (ECE - of the 1 lymph node that was cancerous and peri neural involvement. ) but she Gould choose not to do that. 5 years is a good amount of time but she could very well hang on for 15 why allow your life to be cut short! And suffer a painful death? Hope she decides for he surgery! Hugs to you - take care!

Bruno, welcome to OCF. Im sorry you are going thru this with your mother. Im sure your mother does not have all the facts or she would not be suggesting to ignore getting treated. Oral cancer in her situation probably can be successfully treated giving her many more good years. Without treatment, who knows how long but 5 years really is doubtful. Without treatment she could make it maybe a year, probably not 2 and it would be very difficult. Brian's description pretty much sums it up. It is NOT a disease anyone would want to die from. Of course, it is her decision. All you can do is give her info and hope she chooses what will be best for her situation.

Best wishes!

Hi, Bruno
In addition to the previous suggestions, you might also want to look at this thread, which shows a very positive outcome after surgery - maybe including encouragement would help:

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=138420#Post138420

Best wishes to you in this difficult time.

Thanks all for the replies.

My sister, my brother and I talked to her today. I am almost certain she will have the surgery. She has a doctor's appointment on Friday. I have a few more questions for the group. Most likely the doctor will clear this question but I would like to know how urgent is the surgery. Should it be done ASAP or can she waits 2-3 weeks? Waiting would allow her to prepare psychologically and to arrange financial and legal matters.

How technically demanding is this surgery (glossectomy plus neck lymph node removal) would her survival/cure rate be higher if done at a top rated US cancer center? This may not be an option.

She stills needs to do a MRI of the neck area, will this decide how many lymph nodes are removed? At the moment the doctors have said all lymph nodes must be removed. Not sure if the MRI results will change that.

Thanks,
Bruno

Hi Bruno,

My husband was originally diagnosed with mets to nodes on both sides (no biopsy on both sides, just a PET scan that lit up bilaterally.) The RO decided against doing a bilateral radical neck dissection because the radiation would, in effect, destroy all the lymph nodes in his neck and eradicate the cancer in the process.

His cancer was staged at IVa and T0N2cM0 which means that only lymph nodes had (presumably) detectable cancer and there was no identifiable tumor. His field of radiation was from the tip of his nose, to his spine and down to his collar bone since there wasn't a tumor to target.