My dad, 86, has been diagnosed with Stage 4 Squamous cell (details in my signature, I think) in his upper jaw bone. The doctor suggests removing the bone and installing prosthesis, followed by 7 weeks of radiation. Radiation alone is also an option. The experts say radiation will be quite painful and will destroy tissue. He may have to be nourished through a tube. Doc says my dad is too old for the "toxic" chemo she would normally recommend. I fear he is too physically frail and mentally compromised to survive the rigors of surgery and radiation, and that he really has not understood what may be in store. He is frightened in strange places and very dependent on my mom. Once brilliant, he has sustained considerable deterioration mentally. I do not know whether my Mom, 82, will be able to say no to the eager surgeon. They do not have a primary care doctor who knows either of them very well or can assess the toll that these treatments might take on both of them. We four kids are hundreds of miles away, but could come and help out in shifts. At least one of us tried to go with them to important doctor visits. We've arranged for a social worker (which, of course, my mom is convinced she does not need. Doesn't need counseling either!)

Do any of you have experience with elderly patients with compromised mental capacity? It's hard to talk my dad into getting up as it is. He's a good sport and keeps going, I think, to please my mom and the rest of us. He's stopped grieving the loss of his memory but I sense he is tired. Can we leave him alone and deal with cancer-related pain and wounds as issues arise? Is that what palliative care is about? I do not think my parents can accept Hospice at this time. It sounds too much to my mom like immediate death. I do not want the last months of my parents' time together to consist of pain, fear and harrowing treatment. But perhaps I have misjudged the situation, and he could be cured. Seems unlikely to me, but I am not a doctor. Even if he made a full recovery, he would be returning to a life I do not think he is enjoying very much. Thanks for listening. I love my parents, and I want to support my mom whatever she decides.

Unfortunately we can't replace the knowledge and hands on experience that your cancer docs have in seeing and talking to your parents. One thing is 99% sure and that is unless the cancer is stopped, he will die. You could always seek another opinion but the Tx they propose sounds appropriate. There is also 0% guarantee that this Tx, with or without surgery, will work either. I assume he was a tobacco user and SCC that is HPV- is more aggressive regardless of the age of the patient.

Where is he being seen?

See if you can get permission to talk to his doctor(s).

Stage IV can't wait much longer to start Tx either.

Thanks for the quick response. My dad smoked in his 20s, and not much then. As far as I can tell, he has always been moderate in his use of alcohol. I believe my parents would give me permission to talk with the docs, since we go with them to appointments much of the time. What does the HPV mean? This sounds like something I should know.

Everybody repsonds to tx differently, you never know how your dad will respond to tx. David has said it well, getting treatment advice here cannot replace that of your medical drs.

Carol, use this site and the forums to read what others are/have gone through during treatment. Read the reality of what your father will go through if you make this decision...before you make your decision. Be educated at what the surgery and the recovery from will entail, read what the patients currently in radiation go through. Know that everyone has a different experience with this disease however there are commonalities. After doing your research...ask your dr's the hard questions and push them for answers.

HPV is human paviloma virus, strains 16 and 18 are linked to oral cancer as well as cervical cancer.

Good luck

Eric

I doubt by the location of his primary (jaw) and his advanced age that he would test + for HPV that's why I assumed HPV-. Today we basically have 2 types of oral SCC, HPV+ and HPV-. There is a test for HPV and if it's not positive then it's HPV-. HPV+ has been shown to have a better response to the existing Tx and therefore has less of a chance of recurrence.

Tobacco and alcohol have long been associated with oral cancer and in the past 7 years or so HPV hit the cause list. Recently though we have seen more and more people coming to this site who say they are not tobacco users and only casual drinkers and they have tested negative for HPV and their SCC has proven to be just as aggressive as other HPV- patients.

None of this is answering your questions though as they are not easy to answer and that's why I'm rambling. In fact there will never be a doubt free answer to your questions. If he doesn't get any Tx he will succumb to the cancer maybe within a year. Even if he does get the maximum Tx available he may succumb to the cancer. Without any guarantees, maybe the Tx approach may add only a year to his life if he has a recurrence and certainly the Tx would affect his quality of life during that extra year. Best case he gets the Tx and he lives out whatever natural time he has left but at 86 and perhaps failing memory, how much time is left anyway?

Thank you all so much for all the good information. I so admire your compassion and willingness to help folks who are just starting the journey. My husband died of melanoma about 10 years ago, and we could really have used a resource like this.
Sign me: appreciative

Carol, first let me welcome you to OCF. This is the right place to get info and support. I am sorry that you have lost your husband to cancer. OCF is comprised of patients and their caregivers. While we are very knowlegable, we are not doctors. We are lucky enough to have a dentist who is an active member. We welcome new members and will do our very best to help you along.

Without treatment, your father will unfortunately pass away. It is a painful process not just for the pain the patient feels, but also as a garegiver to watch. With hospice, they will manage his discomfort. I am so sorry that you must go thru this with your elderly parents. With treatment, it will be a long recovery.

I recently had my lower jaw removed and it was replaced with a jaw made of steel. My recovery is long but its worth it to me, Im 47 years old with hopefully a long life ahead of me. To me it is unimportant weather I smoked, have HPV, or where the cancer came from. It doesnt change the fact that I am a cancer patient and survivor. What is important is the choices that are made to enable me to live a long life.

First off, it is optimal to be seen at a cancer center. Thats where several doctors including a radiation specialist, a chemo oncologist, ENY, oral surgeon etc all get together and discuss the patient. Its where your father would receive the most comprehensive care.

Radiation in itself is a rough road as well. Chemo along with the radiation boosts the radiation's effectiveness. Radiation will have side effects such as fatigue, mouth sores, severly dry skin to the point where open sores appear. There are also some long lasting after effects including fatigue.

My suggestion is that your family all get together and have a long talk to see what your father wants to do. Ultimately it is his decision as the patient, if he is able to understand this. If his mental capacity isnt quite where it should be then it becomes more difficult for your mother to make these decisions. At her age, she probably will need some assistance in caring for him. You are fortunate to have a large family who can help.

Please feel free to ask questions as they arrise. The main pages of OCF also contain alot of very informative info. The forum is very helpful for quick answers or opinions. Sometimes the forum posts can be scary. Everyone responds to their treatments differently, as everyone's oral cancers are slightly different in location, size, etc. I hope I was able to give you some help. Best of luck with your choices.

Hi Carol
you and your family really have some quite unique choices to make ,with factors involved that don't affect the majority of people who come to this site.Like Christine i dont think that the reasons how or why your Dad got this disease is of any real importance,what is important is where you go from here.The only way you can make these decisions is to get all the information you can from his doctors and that will involve asking some really tough questions.Quality of life against quantity,chances of him being able to tolerate treatment,how your mum will be able to cope with caring for him,his awareness of his options,pain management,what will treatment achieve what will happen if he doesn't have treatment....i think you get the picture.This disease is unforgiving and as David rightly says it will take his life if left untreated,but if the doctors don't think that treatment will save his life or extend it in an acceptable quality then you need to consider theses things long and hard,and if you can try to find out what HE wants.

Carol

Here is a link to the main OCF page which walks you through some of the treatment issues: OCF emotional treatment
Charm

Hi, Carol -
These are hard and heartbreaking decisions you and your family are facing, and your father's age and compromised mental capacity make them even more difficult. Please know that no matter what you ultimately decide is the best course of action - radiation & surgery, radiation alone or no treatment - you will have information at your fingertips, thanks to this site.

You certainly will have to weigh all the factors, but as others have said, the decision needs to be made quickly. It would help if someone in your family would serve as communications central to help the others understand the options and choices.

You will find much support here.

Marlene