My mother (85) has moderate dementia and ovarian cancer. Doctor is recommending chemotherapy. Anyone have experience with this?

Personally, I would be in attendance when the doctor speaks to your mom.

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.

My aunt was diagnosed with cancer at that age. Her children insisted she try chemo because they couldn't bear to lose her. It made her so sick, she stopped after two weeks. She died about two weeks after that. The tragedy was that those first two weeks -- such precious time -- were wasted on being horribly sick. All her kids regret pushing her to do it.

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.

Google chemobrain. It could very likely cause rapid decline.

I can tell you from experience that there are legal issues here to consider. Does your mom have a power of attorney for healthcare decisions? and define "moderate" dementia......if she is not capable to make such an important medical decision for herself then whomever she has chosen as her agent per the P of A will be able to make that decision.

I think the doctor MUST offer medical treatments for such a cancerous condition that your mother has. What is the reality going to be like if she does take the chemo? Chemo can create such horrible side effects that you'd have to weigh out the pros and cons. Is it even possible that her life would be extended by more than a few months if chemo was opted for? And, with moderate dementia already at play, would it be worthwhile to extend her life at all? And what is the quality of her life going to look like with chemo vs. without it?

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.

I HAVE chemobrain and it's still very hard to find the right words or phrases. Events that happened during chemo are often like a dream, or there is no memory at all.

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.

My knee jerk reaction is no way, but first find out what kind of chemo, they are not all the same. Mostly we picture chemo as IV treatments, nausea, hair loss and other brutal side effects but my brother's chemo was pill form and the side effects were much less.

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.

Interesting. Did she fully understand what he meant by chemo? Because when you are told that you have something and you will die without treatment, often the choice is for treatment. You do not mention stage of her cancer. If there is a lot of involvement of the organs then chemo may prolong her life somewhat, but at some cost as well.
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.

As the type of tumour is so very rare, and therefore can't possibly be anything that your mother had in mind when she pre-declined treatment for (some vague idea of generic) cancer, I think you should wait for the path. report and then ask the key twin questions: what happens if we do this? What happens if we don't do this?

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.

At 85 and with dementia, I would say the care plan should only be pain management and quality of life at this point.
No, she should not go on chemo at her age and with dementia.

I agree with the other posts - find out what stage it is in and what kind of chemo treatments. I had rare clear cell ovarian cancer stage 1C at 51 years old. I received 6 treatments of taxol and carboplatin every 3 weeks. It was very tough. Feels like you are being poisoned because that's really what's happening. Really yucky feeling, fevers, chills, nausea, body aches, and really dark moods. I still have neuropathy from the taxol in my hands and feet that will never go away. It is her choice but if I were 85 there is no way I would go through chemo treatments. On the other hand, talking to my 80 year old mother, lots of elderly people in her Florida community get cancer treatments. Gather all the info you can and I think the answer will come. Good luck.

It's hard enough to have one or the other, but both, yuck.

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.

Depending on type of cancer? Outlook? Stage of dementia?
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.

Your mother said yes. Go with that. Let her start the chemo and see how it goes. There are so many new protocols - types of chemos - and not everyone has major issues with them. They also have great drugs to prevent side effects. After she starts, if she has problems, she may change her mind. Let her decide.

When ovarian cancer is treated in early stages, there is good chances of survival and recovery. In latter stages, the results are not so optimistic. Since your mother has moderate dementia, please consult with her doctor privately. Ask him/her about her chances of survival in light of her dementia and staging of her cancer. If she does not have a good chance or would expect chemotherapy to be brutal (and it usually is), then ask him/her to suggest palliative care to your mother. If her chances of survival through treatment are optimistic, then be there to help your mother through it.

Ask the doctor, in your mother’s presence, how long the chemo will take, and how much longer she is likely to live after it is finished. Let her decide. The following was my mother’s story from breast cancer..

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.

My mother (93) has had three major surgeries and at least three additonal stays in hospital in the last 5 years. Every time she said she didn't want it and every time in front of the doctor she agreed to go ahead.
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.

The older generation think Drs are Gods. That they of course know what is best. They never question.

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.

Thank you all for your thoughtful comments. To answer some of your questions, I have POA financial and medical. My mother has short-term memory problems and some paranoid/delusional thinking, but operates very well in her own space.

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.

I like the doc. I don't know the answer and zero experience. Personally damn...I don't know. I cannot tolerate being stuck, nor the thought of chemicals being pumped into me...but if I had a reason to live...and if everything humanly possible was done to alleviate the pain and distress for me of the treatment, I guess I might consider it. I guess I'd be just wanting to do what mom wants. It's her life. Perhaps hospice can help sort things and options out?

I know I am attempting to read between the lines, but your mom sounds like someone who still enjoys life and my have quite a bit more life to enjoy. If she bounced back from such an extensive surgery, she must be in pretty good physical shape for her age, and may it increase her lifespan if she goes for the chemo. Depending on what type of chemo, some of it is not as harsh as it used to be, but you would have to inquire about that with the doctor.

Would opinions of treatment from the cancer society help ?

Chemo will not cure her cancer. It will prolong her life. Since she didn't want to treat cancer before she had dementia then I would not put her through chemo now that she does have dementia. She will not understand why she feels so sick and tired after treatments or why her hair is falling out (if that happens) or why any number of terrible side effects are happening to her. Good that the surgery went well. I would leave it at that and get her a palliative care consult so that her pain is treated and the focus is on her quality of life.

You say your mother has moderate dementia - is she capable of making informed decisions? If so, ask the dr the purpose of the chemo is. Is he talking cure, remission, prolonging life? Try and get as much information as you can - ask the dr what he'd do if it was his mother (he may not answer that question, but ask it anyway). If your mother is capable of understanding and making an informed decision, then try and follow her wishes. If she can't, then someone else who has the power to make the decision needs to make it for her.

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.

My family has all gone, and my mom and aunt had dementia. After doing everything I could do for each family member...I believe that regardless of my mom/aunts dementia, if either said yes then I'd do it. My aunt had stage 4 labial cancer and she would not speak when asked (in fact, didn't speak again after her diagnosis. :( ...she did not have radiation-which is what they suggested, but they said that it would be hard on her since they were doing one spot radiation so I didn't do it and she passed 4 months after her diagnosis. The weight would be too heavy for me if I said no...and she said yes. One of my best friends has multiple melanoma and she takes a chemo pill...it's been very gentle on her and appears to be working. Ask about this. Love and prayers to you all.

My personal opinion: life has just given your mom and you a get-out-of-jail card. Dementia is a HORRIBLE disease, worse than the cancer she is having. I would not go thru with the treatment and let her die with dignity. Dying from dementia is a sad, sad way to go.

My husband has advanced dementia and I know if he was still lucid, he’d choose death from cancer than dementia.

This might be me sitting on the fence again but...
If mom is aware enough that she FULLY understands what the diagnosis is, what the treatment involves along with all the side effects AND what the chances of them curing the Ovarian Cancer is then she can make an informed decision.
BUT
I would not want to put my loved one through chemo.
I would opt for Hospice at this point.
There is a VERY good chance that they did not get all the cancer and she would have to undergo more surgery
She may have done well with the anesthesia this time but next time it may not clear her system as well.
As she declines each chemo session will become more difficult.
And there is a "chemo fog" add that to dementia.
I am so sorry...
((hugs)) for you and mom.

When you talk to the oncologist who will be in charge of the chemo drug selection, find out the side effects especially on someone at her age. As we all know cell turnover as we age gets slower and slower. Chemo is a poison not just to cancer cells but non cancer cells. Often affected are the cells in our mouth and those lining the intestine. Dry mouth is an issue as is bowel dysfunction. Every side effect should be listed. And I suggest recording this visit so you don’t have to write it down and can play it back. If I were 85, I have lived most of my life...what else is truly waiting for me? Do I want to live it in chemo misery? Hell no! I will let it take over and go on hospice and enjoy the time I have left. Most likely at 85 the outcome will not be a good one.

It is PITIFUL her doctor did not discuss the adverse side effects of chemo, especially for the elderly. To me that is *very* irresponsible. That should be explained to you in very plain language and the decision should be informed. In my opinion she needs another doctor. One who will not discuss risks scares me...because that is your mom. Chemo is a very VERY serious decision and you need ALL the facts before you. You need to know what drug they proposed to give her, and all the side effects and risks. She may even need a port because chemo often destroys veins and her delicate tissues can become damaged. Frequent lab draws. Along with a port--increased risk of infects. She's elderly.


Chemo is actually a POISON attacking rapidly growing cells, or stops them from growing. Because stomach cells, bone marrow, and hair are rapidly growing, that causes the terrible side effects. Although chemo drugs have improved to target specific cells, they all still have side effects. If you want to know the truth, "chemo" *should* be called poison therapy, was discovered by *accident* during WW2. Mustard gas was used as a weapon of war--it works by destroying rapidly growing cells, so it kills by depleting bone marrow caused aplastic anemia. Rapidly growing cells are also tumors (cancer) cells, so a watered down version begun the era of cancer drugs known as chemotherapy. Mustard nitrogen disrupts the DNA--that is why it prevents rapidly growing cells from growing.

The chemo can make her very sick. Even violently ill. It can even shorten her life due to the side effects and the pure misery it can put her through.

She won't eat. Some side effects include vomiting, infections, anemia, hair loss, sore mouth...complete loss of appetite. Vomiting and diarrhea, which will deplete her electrolytes will necessitate more hospitalizations.

My father had chemo at age 65 and died anyway...but he was put through pure misery and suffering due to the treatment. For one thing, he said he could smell the chemicals in water and it would make him wretch and vomit. He was so violently ill he could not longer tolerate chemo.

https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/chemotherapy/chemotherapy-side-effects.html

HERE is a very good online article to explain about chemotherapy..

https://consumer.healthday.com/encyclopedia/cancer-8/mis-cancer-news-102/chemotherapy-and-side-effects-648006.html

Risks of chemotherapy if the peripheral vein "blows" and leaks out to tissues:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4227315/

PS: If she stops eating due to chemotherapy she will probably need a feeding tube. That is hard work in itself to maintain and more risk of infection. But probably if you give her tube feeding she will probably vomit it up and get lung aspiration pneumonia.

I'm the caregiver for a cousin with dementia, who was diagnosed with a massive and very aggressive sarcoma about two years ago. Though her dementia was moderate at the time, she definitely didn't have the capacity to understand all the implications of the diagnosis or treatment, which involved surgery and radiation (but no chemo), so the ultimate decision fell to me. As her caregiver, it was a difficult position to be in, because if I'd asked her before she developed dementia whether she would wanted to be treated for cancer when she already had Alzheimer's, I'm pretty sure she would have said no. (I think most people would probably say no.) But when faced with the decision in a specific situation, I discovered it wasn't so clear-cut. I had a long conversation with the doctor about what her quality of life would be like with and without treatment, since her quality of life is what I most cared about (and what I'm confident she would have most cared about, too). Based on that conversation, I concluded that she had to get treatment because without it, her end of life would have been prolonged and horrible, and she would have suffered immensely, without understanding why she was suffering. Honestly, if that hadn't been the case -- if she could have had a peaceful end of life with her type of cancer -- the family and I might have made a different decision on her behalf, because I don't think she would have wanted us to prolong her life with cancer so that she could have a long slow decline from Alzheimer's. But given her prognosis, I think we made the right decision: The surgery and radiation wasn't fun for her, but in her case, it was clearly the lesser of the evils -- two very difficult weeks (she had a specialized intense radiation over a short period of time) vs. what would likely have been months and months of misery. She's now almost two years past the surgery and she's had a pretty good quality of life, even with the Alzheimer's. I want to stress that all of this is specific to her type of cancer, and I do recognize that the picture could be very different for someone with a different type of cancer. I also would never presume to speak for another family's choices. But I do think that if you keep her quality of life in foremost in your mind, it will help to guide you. Best wishes with this, and please keep us posted -- it is a very difficult position to be in both for everyone concerned.