Greetings..
I am so glad I found this forum.

My 88 year old mother recently told us of a "mouth sore". A quick visit to her dentist (who she had seen five months earlier) and we were immediately referred to an ENT for an exam.

He ordered a CT Scan and the results show:

"Soft tissue mass along the undersurface of the hard palate which is asymmetric to the left concerning for a squamous cell carcinoma. The mass measures at least 2.5mm in greatest dimension and extends to the palatine foramen which is widened when compared to the contralateral side concerning for perineural tumor spread."

"Bilateral level 2a adenopathy concerning for nodal metastasis consistent with N2C disease"

Here is my dilemma. My mom has an activated POA due to dementia, congestive heart failure and aortic stenosis. The hard palate cancer is the most recent addition to her list of medical issues.

On the one hand, I have her geriatrician recommending palliative care and, based on his referral, she was admitted into hospice care.

On the other hand, I have the ENT who is suggested surgery (60 - 90 minutes) in order to remove the growth. He said that she would be able to handle the surgery and while she may emerge from it with a "rather lengthy period of delirium" she wouldn't have the prospect of living out the rest of her life with a growing tumor.

My Mom is living in an assisted living apartment and gets great care, yet I am worried that if she has the surgery it could throw her into a skilled nursing environment.

She is mobile and enjoys going to the craft room at her assisted living facility. She said that her mouth isn't sore all the time.

She is confused as to what is going on and I am freaking out over the conflicting advice I am getting.

I know my mother is approaching the end of her life and I want her to have a peaceful and pain free death. In listening to the ENT today he made it sound like it would be horrendous absent surgery. He said that the surgery wouldn't extend her life but could eliminate pain. (after a period of painful recovery from the surgery).

I'm am at a loss as to how to proceed. My mom placed her trust in me and I don't want to make the wrong decision. Any advice is greatly appreciated.

Greg

Greg, what a difficult situation. I don't feel competent to offer advice with this, but I'm sure others on the Board are. You've already demonstrated to me why your mother has placed her trust in you. Very best of luck with it all. Linda

I can't discuss the surgery as my cancer didn't require any and I'm not her age but if I were you I would get another opinion from a comprehensive cancer center near you just to see what options and recommendations they give. Not sure I understand why the ENT who is recommending the surgery (in hopes of removing the cancer) says this procedure won't extend her life? Also you say you have her POA (limited to her financial world) but what about a Health Care Surrogate appointing you as her decision maker for medical purposes.

Tough decisions ahead for sure.

HI David,

Thanks for the note. Her POA is activated for financial and medical. Her doctors have declared her incompetent to make decisions and that triggered the activation of her POA and placed all decision making in my hands.

Re: the comment made about not extending her life: The ENT stated that the cancer, having spread to lymph glands and lungs would continue to progress. The surgery would be palliative and would focus simply on removing the growth. No chemo or radiation, etc.

My main concern is that my mother most likely has months to live (dementia, congestive heart failure, aortic stenosis, etc) and I am struggling with the value of the surgery and the inherent trauma of the surgery vs. focusing on quality of life and comfort..vs a surgery that could really throw her for a loop.

Thanks so much for the comments. I am very glad I found this forum

Greg

Hi Greg,

I'm so so sorry you and your mom have to deal with this horrible disease. It is very unkind, and unfair.

In some ways, my feeling would be to avoid the surgery if it is going to cause pain and suffering. Although, what you mentioned does not sound nearly as invasive as what most other oral cancer patients have to endure. On the other hand, having experienced my own mother having a growth in her mouth and how scarily and quickly it grew, having it removed might be the best thing for her as there would be no chance of it invading her airway or bleeding. My mother's tumor doubled in size within a matter of 3 weeks, thankfully not invading her airway but far enough that it hit her gag reflex and bled often, which was very scary for her.

Have the doctors talked about a visiting hospice rather than moving her to a new facility?

If palliative care rather than curative is their goal, then I think whatever is going to keep her the most comfortable should be the course of action. I can't tell you what decision to make unfortunately, but hopefully after you have gathered as much information as you can both from her doctors and from many of us here, you will be able to make the right decision for you and your mom.

Best of luck and keep us informed!

Hi Greg, welcome to OCF! I am so sorry to read your post about your dear mother. What a terrible decision you are faced with! Dementia is a terrible disease to watch your parent go thru and on top of that she has so many other things going on. Poor thing! Im so glad to hear your mom gets enjoyment from doing crafts and that she lives in a good facility.

From what you wrote and further explained your mother has several serious medical problems to take into consideration with your decision. I know its next to impossible not to feel guilt over whatever you decide. Please know your mother trusts you to do whats best for her in her situation. Try not to second guess yourself and know in your heart whatever you decide is whats best for your mother.

If her oral cancer has spread to the lymph nodes and her lungs would the surgery take it all out? It sounds like this would be rather extensive. The recovery from a major surgery could be weeks or even months. Knowing she has other ailments including heart issues means to me, this surgery could be very rough on her. Since the ENT said the surgery is not going to cure her then it could turn out to be very hard on her which in turn severely limits her quality of life.

Im sorry but we are not medical professionals here but we do have extensive knowledge of oral cancer and everything that goes along with it. As a 3 time oral cancer survivor, I have learned more from this forum than from what I went thru. I wish I could help you make a decision but thats not something I can assist you with. But, I can offer you moral support and info to make an informed decision.

Best wishes with everything, Greg!

Christine,

I believe the surgery mention is only for the tongue. I can't imagine a surgery invloving the tongue, neck dessection and the lung(s) could be done in 90 mins?

Greg,

Thanks for the additional input. Again, tough decisions but I guess I would now be more inclined to skip the surgery, assumimg as I answered Christine it only invloves the tongue, and focus on making her as comfortable as possible.

What an awful decision you have to make and I don't believe there is one right answer. I guess if it was me I'd make my decision based first on what your mother has said in her more lucid days about end of life care when things look bleak. Absent that information I'd base the decision on what you'd want done if YOU were in the exact same situation. I know what I'd want but everyone is different.

Thank you so much, everyone. I appreciate all of the comments.

My Mom and I went to see her Geriatrician today and he was wonderful with her. I had an opportunity to speak to him alone and he told me that while he wouldn't oppose surgery, he wanted me to know that the recovery could be "brutal" with her quality of life being impacted greatly for a while and then the open ended question of whether she would ever regain any semblance of quality of life.

I asked him if he would support my decision if I opted not to have her go through the surgery and he said he would support it "100 percent".

He then talked to me and my Mother and in a very kind way explained to her the options. Her response was a gift to me. She said to the doctor "I don't want surgery" and then added "unless you think I should have it". He told her about his elderly father who had a similar mouth cancer. He said that they opted to have surgery and that his father was never the same and lost much of the enjoyment of life in his last months because of the surgery. He told her that if he had it to do over again, he would have encouraged his father to not have surgery in the last months of his life.

It was a very touching conversation. She is so fortunate to have a Geriatrician that speaks to the patient in such a kind and loving manner.

We have enrolled my mother in Hospice Care and they are committed to working with me and the staff of the assisted living center where my Mom lives in keeping her in her apartment for the duration of her life. This is only the second place my Mom has lived in the past 50 years (we moved her into the apartment 2 years ago) and she has grown to love living there. I really don't want to have another move in her future.

My Mother's 88th birthday is Friday and I have a small surprise birthday party planned for her at one of her favorite restaurants with all of her favorite people.

Fortunately, with the dementia she lives her life recalling things from the far past and lives in the moment. What happened yesterday is gone. With the mouth cancer and everything else I am starting to believe that the dementia is, in a weird way, a blessing.

This has been a very difficult couple of weeks and being able to talk about it on this forum has been such a blessing.

Thanks, again.
Greg

Oh Greg, as hard as this all is, it sure sounds like you and your mom are in good hands with her doctor... and she with such a loving son as you. What a special thing for you to do for her. I hope she has a lovely birthday this Friday.

I'm so glad hospice will be helping to care for her at home... it is right where she should be.