Just starting out on this journey…

Welcome @jmf511. You might be interested in this related discussion:
- Tongue Cancer: What are my treatment options? https://connect.mayoclinic.org/discussion/cancer-under-my-tongue-and-raised-lymph-nodes/

However, I understand that your mom's situation requires extra consideration due to her multiple conditions of tongue cancer along with dementia and type 1 diabetes. I'm glad that you have the support of your siblings during this rough time and tough decision making.

May I ask about your mom's ability to communicate? Is she able to understand this new diagnosis? Is she in pain?

Hi! Thank you for your empathy. My mom is not capable of fully understanding this new diagnosis. I believe she will know the word cancer and what it is, but not fully comprehend the implications and what it will mean for her. As for pain, she is in discomfort. She hasn’t expressed actual pain, but she is having trouble swallowing, slurping all the time, and swallowing pills is difficult.

JMF, this helps me understand your mom's situation a bit better. I'd like to tag a few of our long-time and helpful members like @alpaca @loli @hrhwilliam and @calenbd to bring them into this discussion. They have had treatments for oral cancer and can share a bit more about their experiences or answer your questions as you and your siblings face decisions about your mom's care.

This article offers a comprehensive list of questions you may consider asking her care team.
– Oral and Oropharyngeal Cancer: Questions to Ask the Health Care Team https://www.cancer.net/cancer-types/oral-and-oropharyngeal-cancer/questions-ask-health-care-team

I can imagine that you're most concerned with your mom's comfort and helping her live her final days with as little pain and confusion as possible. Has your mom been offered a palliative care team that can offer comfort care? Are you familiar with palliative care?

@jmf511 this is a challenging situation. Yes, the treatment options would not be easy. I'm not sure how diabetes would affect treatment but dementia would make it very hard to go through long surgery. We endure it because we know it has a curative intent. Your mother would not have that comforting sense that they have to hurt her to fix her. I think this calls for a conference with the family and the medical team and I wish you and your mother all the best.

Like your mom, I was also diagnosed with stage 3 tongue and neck cancer. My treatments included 7 weeks of chemotherapy and 35 radiation treatments. I won’t lie that the process and especially the side effects were not pleasant. If I didn’t focus on the end goal of eradicating the cancer, it would have been difficult to get through it. If your mom can’t comprehend the pain she will endure as a process to recovery, it will not be easy for her. Inability to swallow, throat pain, loss of taste, excessive throat mucus, loss of appetite, and dry mouth are symptoms I experienced. Also, the chemo and nausea medications caused constipation. Not to scare you or make you decide to decline treatment, but I wanted you to know what your mom will be facing. For me, the end result (no cancer) justified the discomfort I endured. Also an advocate (like you) will definitely help her make it through. My advocate was my wife. She helped me endure and saved my life. My best to you and my God bless your mom and your family.

Hi JMF. All I can contribute is perhaps a feeding tube or more to the point, a feed port will help your Mom a lot. Her conditions you noted are some difficult obstacles in the path of treatments. Eliminating food and medicine intake issues would make everything else easier to cope with in my estimation. Can you consult a Geriatrician as they might have some good ideas?
The cancer treatment itself is rather common although at that age, I might do the surgery and minimal if any radiation. Or maybe I would opt for comfort care only. But that's me. I have been down this road. I probably have crossed bounds I should not have. This is a real challenge with a very rotten disease. I am so sorry you both must go through this. I wish we could make it all go away.

We are just at the beginning stages of this. We got her diagnosis from her ENT on Tuesday and have our first appt with an Oncologist tomorrow (Friday the 28th). My siblings and I had a family zoom call last night to discuss the options the ENT told us about: surgery, chemo & radiation, palliative care, or nothing. He told us the surgery could be as much as 14 hours because of the placement of her mass on her tongue going to her vocal cords. That is out of the question for us. Most of us agree that chemo is probably not a great option either. So we are going to ask about palliative care maybe some type of radiation directly to the mass? I’m not even sure that is a possibility but at this point it’s all we have come up with. I’m sure that oncologist will have more information for us. The other issue is taking care of all this from her home or putting her in some type of a care center or hospital. She has full-time health aides at the house with her, but they would not be able to handle all of the appointments for treatments. I’m not really sure my siblings and I can handle that either. So we have a lot of decisions to make in the coming days. I think all of you for your kind words, information, suggestions, and prayers. I’m sure I will be back with questions, and keep you posted . God bless you all. @alpaca @loli @hrhwilliam @calenbd

Thinking of you today, JMF. I hope the visit with the oncologist brought more clarity to the difficult decision-making that you and your siblings are facing.

I am so sorry your family is going through this. Having had head and neck radiation, myself I know that your Mom would likely need sedation to tolerate the mask and being locked to a table. I hated it. My Dad in his seventies with a clear mind elected to do palliative radiation for oral cancer. Lots of side effects with oral ulcerations and discomfort. He had a stomach tube for nutrition during this and until the end. I wonder if the newer Proton Beam radiation would be an option? Less damage to normal tissue. Palliative care sounds like the way to go in this situation. Good luck to you all and God bless.