Thanks for your thoughtful response David. We have met with the RO and MO and my mom feels she has all the information she needs from the doctors to make her decision. She was a hospice chaplain at a cancer center until she retired - the same month as her diagnosis. I guess I'm looking for the loved one of someone who chose not to go through with radiation/chemo for oral cancer and learn how they managed through the end in hospice and what types of care became necessary and how long from the time of surgery until they died. I know this is a somewhat grim search on a site that lends itself to real fighters who I admire a great deal - and if my mom were younger, she'd likely have joined you -- but, it's the reality for us right now and I have to believe there's another family out there who has made this same decision.

I can understand with your mother's background in hospice care why she would make the decision not to go through the treatment. As has been mentioned before, there are no guarantees even after going through the rigors of treatment. Has she discussed with the doctors what palliative radiation &/or chemotherapy might be available to her as the disease progresses? I was caregiver to my husband who went through the prescribed treatment and still died within a year of starting treatment. His time following treatment was very difficult as he never regained his ability to eat and suffered severe depression. From a caregivers point of view his symptoms in his last 2 weeks of life were manageable at home but could not get doctors to express an opinion on what problems I might encounter eg. severe shorness of breath, massive bleed, to help me prepare for a crisis. Fortunately I had many years of hospice experience to help me. If I were given this diagnosis myself I am not sure what decision I would make, and I hope I never have to. I hope this is of some help though I know you are looking for someone who has not taken any treatment.
Wishing you strengh and courage to face the days ahead.

Paul R, who is my boss, had a thread called 'Refused All Treatment' that chroniciled his mother's travels down this path. I think she lived a year and a quarter. I believe she was 72 when she was diagnosed and in otherwise poor health. She had watched her husband die a terrible death from pancreatic cancer after going through all the treatments and didn't want the same for herself. She refused the surgery also so there was no way she wouldn't die. I tried to find this thread for some else recently and couldn't. If any of you that are better with this search engine can find it, please post the link.

What do the doctors say? Do they think they got it all or do they feel radiation is REALLY necessary? Chemo only enhances the radiation and can be skipped. I didn't have it because they felt the side effects were too great for a 5% extra chance at no reoccurence, but that was 1997 and who knows what chemo they were using then. Radiation however is the thing that leaves the disasterous side effects that one may never recover from. At 72, I don't know. I think I might just take my chances and wait to see if I got a reoccurence. Tough call.

Take care,
Eileen

Granted I didn't have any surgery and I was 14 years younger and otherwise in excellent health and physical shape BUT even though the concurrent chemo rad kicked my butt and I would not want to have a do over, I am not left with any side effect that is really anything other than a nuisance. If she can handle 7 ugly weeks and it's recommended, I would certainly opt for that vs the unknown without said Tx.

Just one example.

Here is the link to Paul R's thread:

Refused All Treatment

Thanks Deb for finding it.

Remember while you are reading this, that his mother refused the surgical treatment also so she knew she would die of this cancer within a not too distant future. Your Mom has opted for surgery so she MAY be able to take a 'wait and see' on the radiation depending on what the surgeons and oncologists think.

Take care,
Eileen

Thank you all so much for your responses. I will check out Paul's thread. My mom's surgery went well, but there were extra-capsular cancer cells outside a few lymph nodes in her neck, so the doctors really believe radiation is necessary to kill it all. I appreciate the support from others who've made similar decisions. It seems kind of like a waiting game now. But she's feeling stronger every day out from surgery and actually went bowling with me and the grandkids last weekend...those are the moments she's afraid to lose by going down the further treatment road at this point.