I am the primary caregiver for my 87 yo mother who was diagnosed in March of 2007 with oral tongue cancer. At that time she was Stage 1 (T1N0) small cell carcinoma. In April 2007 she underwent a partial glossectomy and supraomohyoid neck dissection. Her recovery was remarkable and she did well for two years. In May 2009 she was diagnosed with a recurrance of the cancer in a lymph node in her neck (sorry I don't have the paperwork for that with me to be more specific right now). At the time of her surgery the tumor was 5cm. The surgery was performed to relieve the tremendous pain in her ear and head. It was successful. She was not a candidate for further treatment due to her weight (70 lbs) and other health issues.

On Friday, August 21st another enlarged and painful lymph node was found between her neck and shoulder. Her doctor recommends comfort measures only. I and my family are in agreement with the doctors regarding this decision. But my concern is what will happen next and can we manage her care at home. Our goal is to care for her in her own home as long as possible. I guess I am looking for someone who has had a similar situation and can advise me as to what we are looking at in the near future. Thank you.

Hi susan
i am sorry for your situation and for your mums condition.there is no real easy answer to your question i am afraid ,except to say your priority needs to be her pain management.Caring for her a home may be doable but i would take advice on that as there maybe issues regarding her airway and her pain control,has she been referred to hospice and do you have a specialist palliatve care doctor?

Thanks Liz. She has not been referred to hospice yet. But we do have a great relationship with her primary care doctor, who is now overseeing her care. We will, of course, see her ENT soon to hear his suggestions. But he and her primary doctor are in close contact, so I expect the same information from him. The hospice care here is exceptional and we are open to all resources available to us to help care for her. We have had experience with hospice. When my dad died from lung cancer they assisted us in caring for him at home.

I know every case is different, but I haven't had much luck getting information about her type of cancer. When my dad was diagnosed with lung cancer the research was very fruitful. And there was much information available about what to expect and the typical disease progression.

Hi Susan,

Welcome to OCF. I am sorry to hear of the situation you are in but happy you and your family are comfortable with the doctors decision. Like Liz said, pain management is huge. You may want to check out the blog section of this site. Some caregivers have been kind enough to document what they have gone through with their loved ones. That should give you an idea of what to expect. Liz has a blog called "walking towards the light" you may want to read that. Liz is one of the best people to talk to, she has wonderful insight from a caregivers point of view.

You can click on Forum list, then OCF Cancer Blogs

I wish you and your family luck.

Suzanne thankyou for your kind words X

Susan you are obviously one of those people who likes to know what is going to happen,and really no one can be sure of the nature off a percieved loss,but i will tell you from my experience both personal and from the friends i have lost here over the past 2 1/2 years that oral cancer can be a cruel death.By the same token susan it can be a swift and unexpected death.It really depends on the location and progression of the tumour.Tongue tumours can be particularly difficult as they obstruct the airway and cause breathing problems.A long time ago we had a poster here called Paul who's elderly mother refused all treatment and he cared for her at home until her death.He wrote a blog which was quite detailed and you may find that useful as it seems more relevant to your case.I will pop off now and see if i can find the date and page number for you.Age tends to bring a more peaceful death as the brains survival centre which fights so hard in the young seems more able to shut down and let nature take its course in the older patient.

Really nothing we say here can prepare you for the death of your mother and i am sorry for the loss you have to face,

Coping with anger and fear forum page 10 refused all treatment options by Paul R.xx

Suzanne, thank you for the information about the blogs. I will spend some time exploring those soon.

Liz, thank you for the help finding the forum posts by Paul R. I have read through that and find so many helpful suggestions.

Thankfully, Mom's tongue has not been effected by her recurrences. Her original tumor on her tongue was removed and she has had no other problems with her tongue. Her present tumor is in her neck (lymph node). My mother has required 24/7 care since January of this year due to falling and not being stable on her feet. She uses a walker, has recently been diagnosed with dementia, and has had rheumatoid arthritis for over 40 years. My brother, sister-in-law, sons, husband, and I take turns staying with her. So I know our situation is much different than most others here. But there is so much information and so many wonderful suggestions here that I know there is much I can learn from everyone. Thank you for sharing this with me.