Before her surgery, my mother said she wouldn't treat it if she had cancer. But in front of the doctor, she said yes. The tumor was very large (11 inches) and wrapped around several organs. She weathered the surgery like a champ. Still waiting on the pathology report, which has been sent to Stanford. The type of tumor she has is very rare.
Any comments appreciated.
It's hard to know what to do especially for someone else. I have always tried to make informed decisions, however, there are times I make what I think the best decision is and hope I got it right. I wish you and your mother the best and that whoever makes the decision and whatever the decision is you will find peace that you are doing the best you can. That is all any of us can do.
We don't really have enough information to make a decision. The tumor is a fourth stage cancer, a slow grower that may have been there for many years. As I understand it, the grading is what determines life expectancy. We won't have that for another couple of weeks.
My mother bounced back incredibly from the surgery. Up right away and no pain, ever! She was very energetic before and is still. The doctor told us he recommended chemo, but that she was free to tell him to go jump in a lake. He also stated he thought she would handle the chemo well.
At 85 I would really think before I did chemo. It can cause problems. First it effectives the heart. Besides being sick and losing hair. You really need to find out what after effects there could be. I have heard of a "chemo fog" I think its called. There was another post where the woman opted for chemo, got a couple of treatments and refused anymore.
Chemo is a money maker. More patients more money for the doctors. Healthcare is a big business.
Even the anesthetist didn't want to do the last two surgeries.
However she came through them, with only minor hospital delirium and is now pretty capable for someone of 93 (well enough to complain, so I know she is feeling ok).
If it had been down to me as her POA, I would probably have turned all these treatments down because she insisted she didn't want it and wanted to die. But as she is competent she made the decisions when seeing the Doctor - which of course she is perfectly entitled to do and should do whilst she is able to make decisions, we have supported her with all the visits to hospital and doctors outside hospital and now in the very nice facility she lives in.
The point is - If she is making the decisions irrespective of what she says away from the Doctors then we have to let them and we have to respect their views either way. As long as she is happy with the predicted outcomes of any treatment, the likelihood of it being successful and the side effects she MAY suffer from then the decision to go ahead will be right for her. If she gets to a point she seriously wants to stop you may have to agree beforehand with her that this is what she will tell her Doctor and you will be there to ensure he/she goes with Mum's wishes, and does not persuade her one way or the other.
My mother had got 10 good years from chemo and a mastectomy, aged 68. It returned she was 78, and the cancer had metastasised throughout her abdomen. The oncologist operated to remove all (?) of the metastasised material, and was pressing her to have another 6 month of chemo and radiotherapy. Her physician did not agree, but was not prepared to oppose the oncologist. I asked the oncologist, in mother’s presence, how much longer she would be likely to live. The answer was 8 months to a year, and that included the 6 months chemo.
My mother then understood exactly what she was facing from another round of chemo, and what she stood to gain from it. She refused immediately. She lived another few weeks, comfortably emotionally and in no pain.
At 85 with dementia and cancer, my vote is no.
I have been taking care of my mother with dementia over 7 yrs. Knowing what I know now, what I have been through, and continue to go thru, if my mother would come down with cancer, I’m sorry but it is no kind of life for them OR YOU.
The pain, frustration, inability to do anything, not being able to reason the tiniest bit of sanity with her, she is as miserable as I am. To see her suffering every day because of her inability to live her life as she remembers, it is heartbreaking.
Do what YOU think is best for her AND YOU if you are to be the one taking care of her.
I WISH YOU LUCK AND PEACE.
One other thing, if she has any kind of surgery due to the cancer, that alone just might take her life. Besides the stress of it on her body at 85, it may also accelerate her dementia. Which is what got my mothers dementia on the fast track.
My gut instinct would be to talk her out of it, BUT I'm not a doctor, it's not me and it's not even my mother we're discussing here. It is possible she might not have bad reaction to the chemo, but most likely it will impact her in some way.
I think MJ1929's response is the way to go:
"Ask the doctor what he expects to accomplish with the chemo. Ask what she can expect FROM the chemo. Ask what to expect without the chemo."
Be very specific AND ask the doctor to keep medical lingo down - you want your mother to hear the nitty gritty, not some mumbo-jumbo. Just saying well, we got most of it, but chemo will catch the rest isn't telling the truth OR giving your mother a clear picture of what to expect. Quality of remaining life is better than quantity if the quantity is going to be a long miserable time!
Will the chemo extend life and if so, by how much, possibly?
What will this chemo do to mom physically? Will it make her very ill?
What will be the outcome if she chooses not to have chemo?
If we're talking extending life a few months or so, is it worth the potential illness most chemo drugs cause?
Since various chemo treatments can be different, what would mom expect to experience while on these meds?
If she chooses not to have chemo, what time line would we be talking and how will the cancer, if still there and/or spreading, impact her?
I recall seeing a woman who was cut off disability while on chemo and had to return to work. She was relatively young (maybe early 40s, if that) and she looked like she'd been dragged through hell and back! I can't imagine being 85, post-surgery and then going through that too! If the medication has fewer sides effects, take that into consideration, but you need specific dumbed-down answers to the questions. Then, when mom's in her best part of the day, explain it all as briefly and simply as possible. Most have a better time of day, often in the morning. Give her some time to consider the pros and cons. Perhaps have bulleted items on paper, so she can look at it. Usually short-term memory losses will result in her forgetting (maybe why she initially said no, then yes, but it could be just doc saying you need this to live!)
The pros and cons are important. If after all that she decides to go through with it, she could change her mind again, if the impact is too bad for her.
The suggestion about waiting for the pathology report might be a good idea as well. Has she been checked for the BRCA gene? The following site has a lot of information which might augment what the doctor has to say. There are links you should check - I only briefly looked at the treatment and after treatment links.
https://www.cancer.org/cancer/ovarian-cancer/detection-diagnosis-staging/survival-rates.html
There's no real way to determine how long one might survive with or without additional treatments. The stats are just that - averages for many, but there are so many factors at play that could impact a single person. If she has any other medical conditions, that could change results. If she develops (or already has developed) other cancers or it has spread outside the area removed, that will change the outcome as well.
I feel bad for her having to go through that surgery at her age! I had a small incision for appendix in my college days and it had me doubled over for weeks!
I don't envy your role in this. Even with a nice, simple, easy to understand list of pros and cons, dementia is going to work it's magic. She could potentially be changing her mind daily, or even hourly.
No, she should not go on chemo at her age and with dementia.
Make sure your mother realises that she is not under any obligation to anyone to start or continue treatment; equally, that she will not look like a fool or a weakling if she changes her mind about refusal on receiving new information. Ask the doctor to confirm that principle, in words, in her presence.
I would discuss with her carefully the side effects of the planned chemo, the option for Hospice or Palliative. And then, really, the decision must be hers. If she says she wants chemo you can hardly refuse her that. She has already done she surgery despite knowing she has tumors that involve spread, so I don't consider it out of the realm that she has chosen chemo.
I wish you luck. I hope all her paperwork is done so you are ready to step in if need be, and hope you discuss thoroughly as you are able to, her wishes.
Atul Gawande's book Being Mortal discusses the disconnect that often occurs between what the doctor is saying and what the patient and family hear, be sure to ask about quality of life and clarify just exactly how much extra time you would be buying with treatment.
People kind of shrug it off--as everyone doesn't get this.
But it's real and it has it's days. Today is one. I just feel stupid and tired.
Saw my oncologist last week and he asked about it--sadly, I probably won't get my 'pre-chemo' sharpness back. And I am only 64.
Chemo is not for the faint of heart. Even though you can get through it, doesn't mean that it's the TX you want. Esp at an advanced age. Chemo is kind of just the rotten kick in the pants after the surgery.
I hope your mom can make the decision best for her. If she currently HAS dementia---that's a decision I'm glad I didn't have to make. But having chemo-fog all the time---I'll be honest, it's hard.
Thisisn'tfun. I am 86, I don't have dementia. There is no way I would want to be that sick again. There is no "uphill" for us. As we age there is no going back to being young again. I don't know your mother but for myself, I do not want to be a burden to my kids, I want to be able to take care of myself. The first time I did chemo, I had a child at home and I felt I had to do whatever I had to in order to live. I am not there now and even though my hubby has Alzheimer's, I don't feel the crushing need to stay alive for him.
On the other hand, if she starts and it is too much for her, she can always stop.
I do not believe this life is all there is. I believe there is more out there and someday, God willing, I will see what it is.
My mother is 94 with moderately advanced dementia. She has a lot of neuropathy pain in her legs and is wheelchair bound; she seems pretty ok in the morning, but as the day progresses, her confusion worsens to the point that by evening, she's in another world and highly agitated. As her POA, I would never take life extending measures on her behalf; her life is SO seriously compromised ALREADY, that to extend it seems cruel.
I don't know what 'legal issues' mshogg44 is referring to in her warning to you. I do know that if you have medical POA for her, YOU get to make her decisions for her, based on what you feel is in her best interest. I can tell you that chemobrain is real. I can also tell you that ANY drugs my mother is given exacerbate her dementia something fierce. It's a losing battle one way or another, unfortunately.
I am sorry you are both faced with this situation. God bless you and give you the strength to make a decision that you are comfortable with, and that you won't question, one way or another. Sending you a hug.
In our family was a woman (BIL's mother) who had either cervical or ovarian cancer (this is a few decades ago so I can't recall, but I believe it was the former) for which she had received chemotherapy, with all the miserable side effects. This worked fine...until the doctor detected a "spot" on her lung, so she underwent a new round of chemotherapy. The doctor also decided that she should have chemotherapy indefinitely because his opinion was that if a tumor reappeared, then there would be no successful way to treat it. Therefore, she followed this regimen, receiving treatment every two months, and spending two weeks after each session nauseated and miserable. Finally, she reached a point at which she told the doctor she simply couldn't tolerate it any longer, as she was now over 80 y/o. She had always been very strong both physically and mentally, but a couple years later she weakened and died. I had only seen her once or twice each year, but her fight went on at least a decade. She had no dementia, so she made all her own decisions. I'm not so sure I would want to go through all she did, particularly the indefinite chemotherapy regimen.
Ask the doctor what he expects to accomplish with the chemo. Ask what she can expect FROM the chemo. Ask what to expect without the chemo.
Make sure that she is comprehending everything that is said to her.
I can’t tell you how many times my mom would have a conversation with her doctor and she would listen carefully but afterwards she would ask me to go over it with her.
I don’t know about your mom but my mom has the ‘white coat’ anxiety issue. Lots of people have it.
When a person is anxious and it’s emotional speaking about serious health issues, they can easily miss certain details. Especially if they have hearing problems like my mom has.
It’s not all that unusual for them to agree with the doctor but it isn’t how they truly feel.
Their generation believed that doctors knew best.
I don’t think that I would want chemo at 85. How do you feel about it? What do you think your mom would truly want?
If that answer is absolutely not, then please make sure that is on record for her. Does she have a living will or a POLST in place? At 85, it is best to be prepared for everything.
Best wishes to you and your mom.
The guest takes notes and also has a copy of the questions that the patient wanted answered. It really helps to have a friend along.