Sadly, my mother (73) has Stage 4 Breast Cancer that metastized in 2021 to her collar bone. She had a round of radiation and has been managing up until now on Faslodex and Everolimus but it's unfortunately slowly progressing in some lymph nodes.
All while this has happened, she was diagnosed with PD in 2023. Since getting on Levodopa, and a slew of other meds for other things, she has cognitively declined and her PD has sadly affected her (incontinence, memory issues, and PD impulse control) to the point where she is a 24/7 needs person now.
After speaking with her oncologist and a neurologist, they rec that my mom probably should consider stopping her cancer treatment since the Parkinsons meds are impacting her ability to be independent and function optimally. I don't think my mom is actively dying but I have seen my mother go from a very independent hard headed person, to a completely different person - she is no longer this big scary "mom" to me. Shes often anxious, unsure, has moments of memory loss, and is more focused on her tv shows than going out for a run. It's like shes a kid again - she even has started to confabulate when we know shes taken chocolate from our kitchen.
I want the best for her, but I'm not quite sure what that means? Even if the cancer is still spreading, I don't want her in pain. Won't stopping mean the cancer could give her pain? But when shes suffering from her PD, I feel awful for her. The struggling to get up, to even turn around and sit is at least a 15 minute activity, and the look of panic when she can't get to the bathroom is just awful to witness. Compounding this all with cancer treatments just seems like it's prolonging the inevitable and it seems like it would be...i dunno, putting her through more work when she'll just get worse with her PD.
Has anyone else experienced this dilemma or situation with a LO? I tried looking in the search bar and found similar posts, but I couldn't narrow down the posts to PD AND Cancer care advice and was hoping to get insight from others.
I have medical POA for my mom and have experience with having to let go of my father when he was in the ICU years ago but...I just don't know exactly what to do now...since it just feels like I'm trauma responding in my brain and can't think when considering having to make a similar choice for my mother.
Any advice or similar stories would be absolutely welcomed. Thank you.
This is some time ago, and cancer treatment may be less unpleasant now. If M had not accepted the operation, she would have probably died in less than 3 months, but with much less pain and distress. Your question asks “Won't stopping mean the cancer could give her pain?”. In M’s case, the cancer pain was treatable at home with me, the awful time in hospital etc was … just awful.
The struggle is really real and you bring up a good perspective on communicating. I have talked with my mom on this situation, but I'll continue to.
Because quite honestly this is a personal decision. She needs to be as mentally aware as she can be of the probable progression of each disease, and what it will mean to her if she takes treatment, and what it will mean to her if she does NOT.
As a retired RN and as a second-time cancer victim I have made decisions at 83 that I would not have with my first bout in my late 40s. No chemo this time. And no testing of nodes this time other than the one in the vicinity that was clipped at surgery and is micro-positive. Eventually, I suspect, this bout will do for me if something else doesn't first. I won't do chemo but did choose to do radiation due to the cancer having seeded out some "satellites " as they call them, to the skin; skin involvement is a dreadful thing to deal with at the end.
So I have made my choices. Everyone in family who knew me knew I learned as a nurse that I fear death much much less than living on with some things. I am so happy I had a fully written out advance directive and talks that let my daughter know my thoughts and feelings.
If your Mom cannot make the decision talk with doctors involved in BOTH disease--those teams will help you know if it is time for palliative. As I am mentally capable I was already able to visit with them in this way and to see a psychologist in preparation for, if needed, MAiD law to avoid the last six months in hospice.
You mention that cancer will be painful in the end. Yes, that is certainly true. With good palliative and good hospice care it will be much LESS TRUE. That is where you will truly be needed if mom can't make her own decisions. But that is inevitable whether it is treated or not. Stage IV cannot be turned back with treatment. It can be more slow in progression, and if the current treatment is easy on mom, then she may wish to continue it.
I think you know all the things you must consider. I am sorry the decision may land in your lap. I hope you know were I your mom, with the losses already being sustained, I would not want to go through the losses of PD ALSO, and would hope you would make my time here easy as you could, and short a time as you are able. But I am not your Mom and can only give you my own opinion. And wish both you and your mom the very very best of luck. I am so sorry.
Mom is fully aware of the two treatments - her PD and her cancer. However, I think over time she was losing sight of how her body was changing from both the PD and the cancer treatments. It wasn't until she moved in with me that it was clear that things were not "fine" and why she needs 24/7 care. Because of this, I took more of the reigns with her healthcare.
We are working with her onc/neuro to confirm if discontinuing treatment is "right" for her while weighing what she wants. She understands what it all means to stop but she ultimately trusts the doctors too. I just want her to not be struggling and to just - exist easily without prolonging the inevitable. Her Faslodex is painful for her and she manages it but barely - she hardly weighs anything and if the cancer is still growing, albiet slowly, I just don't think it's fair to her to keep trying to manage both as the PD continues to degrade her.
Thanks for the encouragement and perspective.
Mom struggles too and has hovered at 97 - 100 lbs even if she eats all the time. Its like the PD is destroying her mind but then the cancer treatments are just eating away at her slowly while keeping her cancer at bay...just seems like not fair? Mom is relatively "young" but unfortunately, she just got unlucky with her diseases.
Sorry to hear that your kids are being affected - it's scary to see a LO change but also to see as you grow that your LO is not necessarily growing healthily with you. However, I think its good that you recognize their feelings too even if they don't say anything to you directly.
Your mother is dying, that's a fact. Maybe not today or tomorrow but it will be soon enough whether from her cancer or PD, and the most important thing now is keeping her as comfortable and pain free as possible so she can enjoy(best she can)whatever time she has left.
Hospice will have a nurse come to your house once a week to start and aides to come bathe her about twice a week. You will also have access to their chaplain, social worker and volunteers. Plus they will supply any and all needed equipment, supplies and medications all covered 100% under your mothers Medicare.
I would at this point research the hospice agencies in your area and then have them come out to do an assessment to see if she would qualify for their services. I'm betting that she would.
My late husband was under hospice care in our home for the last 22 months of his life, so even though to qualify for hospice the doctor has to believe that your mother will die in 6 months, that doesn't always mean that they're right as only God knows the day and time that He will call your mother Home.
I wish you well as you now do what is best for your mother.
I appreciate your experience and the points you've wrote.
Knowing she is dying has never scared me - sadly, when the cancer returned for her after 15 yrs of remission I had made peace with what the outcome will be.
It just makes me want to make sure that she is in the least pain as possible as you pointed out. I appreciate your words.
For myself, I agree with Margaret. And luckily for me, both my parents were very clear that they did not want vigorous pursuit of extending life. (I was POA and health care proxy for my dad who passed 18 months ago and am still for my mom).
Given that she now needs 24/7 care, where does she live? You mention “our” kitchen.
You might want to look into hospice. It was a godsend for my dad.
I am so sorry for what you are going through and wish you peace. You sound like a very thoughtful person and daughter. I hope you have a lot of support for yourself.
The POA does have her wishes explained - they boil down to she doesn't want to prolong anything if it's clear that its terminal and wants to be as pain free as possible. When I ask her about it now, we've had several conversations where I have asked her what she wants, she still leans in that direction of thinking which I'm glad for but also sad for.
Currently I take care of her in my home with my spouse. It's been a very challenging time - I've had to learn a lot not just about her diseases, but about her too. I think she has had to learn more about me too.
We're actually in contact with Pallitive Care and I know I can ask them for advice but I just really wanted to hear from other people too. To get some perspective that isn't directly from a team of medical people first. It just helps me understand what other people go through.
Thank you for your thoughts - I really appreciate you saying I sound like a thoughtful person and daughter cause I don't always feel that way about myself.
I think that I would choose the same - I wouldn't want to burden my family but I also would want to be able to be with them in a safe and loving environment for however long I have.