Move on to palliative care?

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artiecat
artiecat Member Posts: 257
edited February 2018 in Stage IV/Metastatic Breast Cancer ONLY

So...I have been out of active treatment for mets to bone and extensive lymph involvement for 7 months. (Somehow I am still here!) Not many sx except for periodic bouts of bone pain and general weakness. (Graduated to using a walker for morning walk last week!) Recently discomfort in belly, increase in lymphadenopathy in neck, which is impacting swallowing to some extent. Also painful shoulder from cancer in teres muscle.

My onc has ordered a CT and has made a referral to palliative care. I don't feel I am ready for PC, but as I have been thinking about this, I realize the oncs are really for those in active tx.

Thoughts?

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  • EvaGor
    EvaGor Member Posts: 41
    edited February 2018

    I happen to work in a cancer center and our oncologists see plenty of palliative patients, it's not like they suddenly abandon you. Of course it may depend on your own oncologist. If you ask me, it's good that you got the referral. Palliative care workers are usually much better when it comes to pain treatment since their main focus is to keep you comfortable.

    Hugs.

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  • pajim
    pajim Member Posts: 2,785
    edited February 2018

    artiecat, palliative care and hospice are not at all the same thing. Palliative care goes along with treatment from your onc. It's just that they are specialists in treating symptoms and making you feel better.

    Hospice is the end-of-life assistance. Either at home or as an in-patient somewhere.

    Hope you are feeling better soon!

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  • dtad
    dtad Member Posts: 2,323
    edited February 2018

    Completely agree with pajim. Most people wait too late to use both palliative care and hospice. Palliative care is just supportive care while still getting treatment. Hospice care is for those who have decided not to continue treatment. Both are wonderful organizations that are under utilized. Goos luck to all...

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  • artiecat
    artiecat Member Posts: 257
    edited February 2018

    Thanks, all. Actually I was a hospice social worker years ago, don't know why I can't get my head around the palliative part. I guess I just don't feel that my sx are enough to merit it. I have all my end of life paperwork in order, and I have plenty of support from family and friends. Part of the dilemma is that I live in Palm Springs and my doc is 2 hrs away where I used to live (health care here in the desert is not optimal). When it comes time that I am not able to manage on my own I will have to move over to my dtr's home, which is near the doc. It just doesn't make sense to me to start with a palliative team out here when I will be moving (which is a whole other issue).

    Appreciative your input, folks! I guess I am making some fairly simple decisions too complicated! And, I really didn't think I would still be putting along seven months after stopping all tx! (Nor did anyone else!) Just goes to show...LOL!

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited February 2018

    I've heard a lot of good things about palliative care. It does not at all mean giving up on treatment. Palliative care doctors work with oncs and focus more on pain management and quality of life issues while the onc focus on the cancer treatment. Wouldn't hurt to at least have a consultation.

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  • pajim
    pajim Member Posts: 2,785
    edited February 2018

    artiecat, they are there to make you feel better. Use them! And if you eventually move near your daughter you can find another team.

    I was in Palm Desert playing golf just before Christmas. It's a lovely place. [Can't imagine in the summer though]

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  • artiecat
    artiecat Member Posts: 257
    edited February 2018

    pajim - happily I was in Vermont for most of last summer when was so hot! Yes, good idea. Thanks!

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