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nymima Asked February 2021

Mother (95) is in hospice for CHF. She has Inflammatory breast cancer that is getting worse too. Where does this go from here?

She has chosen not to treat for this and is in fact saying she has “cysts”. It is very bad at this point. Multiple tumors, dark red/purple in color all over the breast. Goes under her armpit. Hasn’t broken the skin yet, but hospice will wrap it if it seeps. She is still managing around her house. Where does this go from here? Does this cancer spread or metastasize? She has had this about a year. But it started as a pea-size lump that she was aware of in Jan of 2020. I’ve asked about this before on this site, but it was not as bad as it is now. It’s bad! Sorry for the repeat. I am in shock that she is not more debilitated. Her chf is declining slowly. She is also 11 yrs into her old pacemaker. Not sure it is even working anymore. I don’t know how she does it to be honest. (I’m keeping close tabs on her and so is hospice).

EmotionallyNumb Feb 2021
You understand that hospice is just about comfort measures, right? Mom has already made the decision that she does not want to treat any more of her illnesses and just wants to be comfortable until her death. She has also stated she doesn't want to go to the hospital to treat whatever is going on with her lumps. Hospice isn't really going to do anything about it unless it interferes with her comfort. 'Monitoring' it doesn't really mean anything because hospice doesn't treat, they only provide comfort. Hospice isn't going to do surgery or recommend chemotherapy because 1. that's not what mom wanted when she signed up for hospice and 2. that would be treating a new illness or doing diagnostic work-ups. There is not point in doing diagnostics or heroic measures when mom doesn't want it and has stated she just wants to be comfortable until her death.

Families often have a more difficult time accepting hospice then the patient does. Mom is 95 and is likely tired, loving her also means respecting her choices. She is ready to go even if you aren't ready to let her go.

Midkid58 Feb 2021
What exactly is your question?

If mom has signed on for Hospice, then she is choosing to approach the EOL with pain and anxiety management and she has accepted her inevitable death.

If she is managing well, in spite of all this, wow, just be grateful.

I think you are having a hard time accepting this--maybe you should be talking to the chaplain or whomever the Hospice uses for spiritual support.
nymima Feb 2021
I just saw the breast today. I find it difficult to know what she must be feeling and dealing with. She is not one to complain because she doesn’t want to worry me. I am at a loss as to what to think or feel. I texted one of hospice nurses today and they are aware of everything going on. Just feel helpless and don’t know what to do. It’s been a long journey on hospice and the ups and downs of chf and her skin cancer. Now the addition of another co-morbidity and the seriousness of this is jolting. My question I guess is what to expect from here? She doesn’t live with me, but she is close by. I see her often. Should I be looking into the hospice facility we have near us? The facility won’t take anyone unless they have 6 months or less to live.

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nymima Feb 2021
She hasn’t seen a doctor in over a year and a half except for a dermatologist. Not since signing on for hospice. No oncologist at this point. She has squamous cell carcinoma too and she sees a dermatologist for this because her squamous cell tumors bother her too much when they get too big. Mostly on her legs and face. The dermatologist has seen the breast on her last visit - maybe about 3 months ago. But it’s so much worse now. She said the cancer has infiltrated her lymph nodes under her arm at our last visit.

I feel she has inflammatory breast cancer. Whatever it is, I don’t know how she is coping with it. And I don’t know what to expect. CHF is one thing and this is a totally different story.....

Mom said she doesn’t want to have the “cysts” drained because she would have to go into the hospital for 3 days and she’s doesn’t want to do that. These are not “cysts”, but I’m not going to argue with her because I feel what she has is not treatable at this point anyway. She would never go for radiation or chemo even if it was offered.

GardenArtist Feb 2021
I'm assuming since she's on hospice that she's not getting any treatment for the cancer?   Have you consulted with her oncologist?  She/he's the best person to offer an assessment of whether or not her specific type of cancer can spread or metastasize, and if so, what affinities it may have for other organs.

As to her pacemaker, I assume again that since she's on hospice, the standard pacer checks aren't being given?    She can have the pacer checked remotely.  My father was provided with a transmission machine, and a device to be held over the pacer.    Its status of performance could be judged by the cardiologist w/o his having to leave home.

This must be so hard on both of you; watching someone decline is a difficult experience.   

I hope you are able to find answers which offer  you some comfort.
nymima Feb 2021
TY. Hospice is if the conclusion that what ever happens, happens. If her pacer is not working anymore and she is operating with her own heart mechanisms now, then so be it. Why bother to investigate? She is not going to do anything anyway. So I kind of get that and have moved on from that whole scenario.

My mother does not speak of her death. We have a wonderful spiritual advisor with hospice who I speak to. But my mother rarely goes to the topic of her own death. She is forever in the present. It is frustrating because I don’t know how she is truly feeling - emotionally, mentally or physically. She is always “fine”. What can I do with that? I want to have more compassion, but I can’t react how I really want to react at this important time in her life. In essence I can only live in the present with her and pretend everything is just peachy. I know better. I am treating for cancer for the past 4 yrs and I have had my moments. So I know what it’s like to be afraid. But she won’t go there. It’s like a big lie everyday. If anyone saw this breast like I did today, it would be shocking. I don’t know how she is managing with this terrible situation. How do you not talk about the 8 thousand pound elephant in the room?

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