Opinions needed, please, especially from those who have been in this situation. Mom will be 80 in October. She is in Stage 5 of Alzheimer's, and that is currently under control with Donepezil, Memantine, and Buspirone along with Lexapro for worsening depression. Appx 3 weeks ago, she started complaining of headaches, and I noticed at that point swelling on the right side of her face. (This is the same side that she has had 3 surgeries to remove pre-cancerous spots on her jawline caused by ill-fitting dentures.) The doctor confirmed last week it is invasive squamous cell carcinoma, & results of the CT scans indicate it is stage 4 and likely in her lymph nodes under the jaw as well. He is recommending surgery (it would be a 7-hour surgery + 4-5 day hospital stay, & massive reconstruction of the jaw/cheek with Heaven knows how long a recovery time). They would have to take part of the upper and lower jaw & reconstruct the area. The dr provided the following options in order from "best" to "worst" choices: 1) surgery with reconstruction followed by radiation and chemo, 2) chemo and radiation, 3) either chemo OR radiation, 4) no surgery, just palliative care (which is Mom's 1st choice); however, he warned us that doing nothing would result in the cancer spreading, pain, and eventually it would move through the skin (open wounds), and would eventually affect her eating and swallowing. She has said in the past she does not want measures like feeding tubes, etc. Her PCP does not recommend the surgery, as it could push her cognition over into delirium. We are leaning toward no surgery, but don't want her to suffer, but it seems like none of the choices are good choices. Mom has more lucidity during the early afternoon and says she doesn't want surgery, but then a minute later will say "unless it's a life or death situation." (DUH!), so this makes us unsure if she truly understands. She is adamant about not wanting surgery, and I am not sure we can talk her into chemo or radiation. (For those who have gone through this, did your LO try chemo or radiation during otherwise palliative care and & find it helpful?) We are not sure what to do, and folks on this board have been so helpful before, so I am hoping for some input. TIA.
I’m so sorry for your mothers cancer and Alzheimer’s.
I’m wondering if you have read “Being Mortal, Medicine and What Matters in the End” by Atul Gawande?
Gawande is a surgeon, journalist, researcher etc. He has interviews on YouTube and various sites online. His bio is very impressive. A PBS documentary was made from this book.
He warns us that doctors are often overly optimistic of their treatment plans. He offers a series of questions to help patients in the final stages of life assess where they are in life and what’s most important. There are many of his interviews on line. Here is one with the five questions.
https://www.nextavenue.org/atul-gawandes-5-questions-ask-lifes-end/
I hope you have the time to look at this book and to read or listen to a few of these interviews. He encourages us to realize that the goal is not a good death but to live life all the way to the end and to recognize that a medical treatment or procedure isn’t always the best option.
I am wishing you clarity as you sort through next steps for your mom and peace in your decisions.
Alzheimer’s or not it is only human to change our minds so it’s understandable that mom might have some trouble deciding her best course of action.
This book gives a different perspective from just pros and cons of surgery. It helps one realize that our life is much more than which medical procedure(s). I hope you find it helpful.
Surgery with Dementia is difficult so is recovery. If the same type of surgery is done on her that was done on my Grandma there is a good chance that she would not be able to talk again.
I would opt for Hospice and keep her comfortable.
They will give her support as well as you.
If this was me..I also would opt to not have surgery nor would I do chemo or radiation. Just keep me comfortable.
My great-grandfather had a similar type of cancer when he was in his late 70s. He was a dentist and he actually drilled out the jaw bone where the cancer was! This was in 1959 or 1960 before I was born. He had radiation but refused reconstructive surgery and lived the rest of his life with one side of his face sunken in. He told my mom not to bring my brother and sister (toddlers) to visit him anymore because he felt he looked too scary. (She brought them anyway and they got used to his unusual look and enjoyed their visits.) Just considering how he must have felt about his appearance to deny himself visits from his great-grandchildren tells me he was very self conscious. I've only seen a couple of pictures of him and it was a bit disconcerting, but he had the kindest eyes and gentlest manner. He passed in 1962 from the cancer. I guess all that he suffered did not prolong his life to a great extent.
I would ask the doctors about rate of recurrence, complications, pneumonia, infections, and re-admittance into hospital for patients who have advance cancer.
And, if they have ever treated a patient with dementia. I'd keep in mind that many doctors do not really understand what dementia means. They say they do, but they seem oblivious to the reality of it.
Do they understand that the dementia patient will likely need 24/7 supervision post surgery. Is that possible? The patient may be extremely agitated, confused, frightened and resistant to care. Doctors may not understand how a regular hospital may not be equipped to properly supervise a patient who has dementia.
I'd also inquire about what happens if post surgery, you mother's cognitive condition declines, which is a risk after anesthesia and the trauma of surgery. She may awake, but, no longer have the ability to understand where she is or what is going on. If not, is she going to pull tubes, disturb the wound, break stitches, resist care? Would restraints be needed to keep her from harming the surgery site or receiving hydration?
My concern was that my LO would be in pain and not able to understand why and no amount of explaining would make it better. I did approve her having a growth on her head removed, because, it was non-invasive and light sedation, but, I would treat a major procedure very differently.
There's a lot to consider. I'd also inquire about pain control with her doctor and if Hospice would be an option, if surgery is not deemed appropriate.
What these surgeons have not told you is that she will need a feeding tube until she is healed from the reconstructive surgery, how many months or years totally depends on how well she heals and how many surgeries it requires to do the reconstruction. If the bone graft gets infected she will require more surgery, then she will require daily therapies to treat the infection, possibly a picc line because it is a deep seated infection and hard to treat. Oh yes, what about the medication she will need to take to help her body accept the new grafts?
Is she prepared to be completely deformed by this surgery? That is a real trauma and concern. Women can't just grow a beard to hide the fact that they have no face.
These scare tactic surgeons only want to use her as a guinea pig and I find that incredibly unethical.
Please don't waiver with your mom. She can't possibly comprehend that she will loose ALL quality of life for the moment they remove her jaw.
Get her some good vitamins and large doses of vitamin c, and let her enjoy what time she has left. Radiation and chemotherapy will also steal her of any quality. Give her the best quality you can for her remaining time. Doctors don't need to be agreed with or believed. They don't know how long she has.
Palliative care will transition into hospice and she will not need to suffer.
God be with you as you make your decision.
To perform radiation the person has to be fitted for an individualized mask of sorts where the radiation machine will focus on. Just getting the mask mold made correctly is a long process ( 1-2 weeks).
In my experience, this surgery and treatment of oral cancer is grueling and of the worst kind.
I am very sorry this happened to your mother & your family.
I would sit and discuss going forward with your entire family. I am not sure if I would proceed but the will to live is a strong one and she may be up to it.
Wishing strength to you at this difficult time.
I'm so very sorry this is happening to you and your family.
We work SO HARD to make our LO's happy, safe, healthy and it's simply impossible.
Aside from that--dental pain is one of the worst. She will not be able to eat, swallow w/o major pain.
My FIL was actively dying from leukemia and he chose to have a cancerous lesion removed from his forehead. It was a pretty gruesome procedure and required a LOT of follow up--and, well, he died a few days after the stitches came out. Tough nut, that man.
Radiation is no walk in the park. Chemo will likely make her sicker.
Accepting that our parents are all going to die from SOMETHING...hard to face it when it's right there in our faces. We all hope for the 'gentle goodnight' and most don't get that.
I'd do palliative care, making sure she's always comfortable and out of pain.