My mother has been told that she needs surgery to treat her (stage 4) tongue cancer. They would need to remove part of her tongue and a portion of her jaw. She is in her 70's and has a serious heart condition. She thinks that she would not even survive the 12-hour surgery they are talking about. She has decided against the surgery. Can you give my an idea about what to expect and the best way to care for her?

Dear Daughter, I kinda hate being the first to jump in here, but what have the doctors told you about choices like chemo or radiation if she refuses surgery? Have they given her any other options? As to how you would care for her and what to expect, none of us want to paint that picture for you, but you can read for yourself the experiences on this forum of patients and caregivers who fought to the end. If you are to be her primary caregiver, your life will change as the disease progresses. You would do well to find a Hospice in your area and talk to them if she doesn't have treatment. Please stay with us so we can support you as needed. Amy in the Ozarks

Radiation and chemo have been mentioned, but the docs don't think it will be very effective. I'm assuming that would be taxing on her heart also. I currently live out of the U.S. and am getting my info third-hand. I haven't found any stories of those who lost, just of survivors. I'll keep looking.

Paul R. is facing the same dilemma and has a fairly well detailed thread on your question. It is in the "Coping, Anger and Fear" forum, thread titled "Refused Treatment".

There are no ways to sugarcoat this - death by oral cancer is an ugly and protracted death. (not that ANY cancer death isn't). You way wish to read Rosies blog about her experience with Heather, her 28 year old daughter. Also look for Danny Boys blog in the same topic. Amy also chronicles her stuggle in a very powerful way. Read Cookey's (Liz in the UK) thread "Walking Towards the Light".

If she chooses to go this route they may still give her some kind of treatment for palliative care to lessen the pain or really nasty side effects or symptoms.

Being a former caregiver for a dying parent I can echo what Amy has to say about your life being changed forever. I saw my own death there and it was a very dark period in my life.

Death is the most powerful teacher that there is. Get all of the support that you can.

Do a Google search for "end of life" and you will find valuable links to information that may help you.

Dear Overseasdaughter,

While my Aunt did go the route of having radical surgery after her diagnosis, she chose to do nothing three years later after her recurrence diagnosis. I've never written about the sad downward turn that her body took along the way on this Board because I thought it might be too disturbing to all of our friends who were and continue to fight so hard. We were told that my Aunt would live three months after her recurrence diagnosis. She survived for ten months and her cancer went much the same route as the people that Gary mentioned above- certainly spreading internally and eventually exposing it's ugliness as it broke through the skin.

If there is anything I can do to help you, answer any of your questions, feel free to e-mail me. My Aunt passed two and a half months ago. I can handle talking about this now. If I can help you, I'd like to.

Hugs,
Lisa

We just got my mother's official diagnosis. She has SCC, Stage IV, T4, one lymph node involved. The medical people we've talked with are not reccomending the surgery because of her age (76) and heart condition. (She had already decided against it anyway.) They are now reccomending radiation and possibly chemo. She has been seen at Med. Univ. of Charleston which is 4-5 hours from home. We are searching for something closer. Does anyone have any experience with Self Regional Cancer Center in Greenwood, SC. Or do you know of any other possibilites near Greenville, South Carolina?

Please answer here or e-mail me.
Thanks,
Suzi