Choosing palliative care; what is your experience?

Your decision makes a lot of sense to me and I think I'd do the same. I'm 70, with breast cancer, but when I look down the road I don't see aggressive treatments in part because of some of the co-morbities you mention (and others too!). My question is--why palliative care instead of hospice? I was a hospice volunteer for a few years, and used it for my mother-in-law. Hospice stops hospital visits and interventions. Do you currently prefer to keep seeing your doctors? In that case, palliative care might work better. Both hospice and palliative care should offer pain control when needed and some home visits. If I might ask, what is your living situation? Supportive for you? I think I might talk to my PCP about which option is better--also, services vary a bit from place to place. Check in again when you feel like it and tell us how you are doing.

I am doing great; no pain, no symptoms of my cancer. When I was in the hospital I had been losing blood via the colon. I was totally unaware of what transpired the first few days though I was answering questions appropriately.

When I was leaving the hospital I realized I didn't know enough about my status and I needed clarification from a GI oncologist and my PCP. I have now met with both of those and will be meeting with someone from hospice this coming week. When I saw the PCP a week ago my hemoglobin was 12. I still need clarification from hospice and assume I will soon make arrangements with hospice.

My daughter and son agree with my choices, live close by and have situations which make it possible to be involved with my needs. I expect to transfer to my daughter's home when I need greater care than I can receive in my own home and bed. I hated the hospital bed with its buzzers going off when I wanted to sit on edge of the bed in the middle of the night! I'm in a good place now, comfortable and w/o fear.

Just on a personal level--I find your attitude to be so strong and serene. You are an inspiration. It's wonderful you have this support from your children. I know what you mean about hospital beds! As a young woman I was hospitalized for many months (swine flu, pleurisy, collapsed lungs) and yes--I did not like that noisy bed! Do keep in touch if you feel inclined and up to it. I'm sending you all my best regards from this hot summer afternoon here in the Rockies.

I hope to reach other people who have chosen palliative care rather than cancer treatment. I appreciate those who have commented and sent hugs, which really touched me. I would like to hear about the experiences of those who rejected treatment. Thank you all.

I hope there's no one here who would criticise your choice. It's not mine now (stage 4b prostate cancer) because I'm young-ish (late 50s), I'm tolerating treatments well, and they're working, but I can imagine a time and situation where my choice would be different.

Best wishes for comfort and joy.

@jobli0, I concur with @mir123 about your attitude and decision-making to be logical and strong. A point of clarification, palliative care is not always instead of cancer treatment. Palliative care is symptom management or comfort care that can be given along with curative treatment or treatment where remission is the goal.

Like you, people can decide to stop curative or agressive treatments which have the goal of stopping progression, but continue with a palliative care team to manage pain or other symptoms that may arise.

You may also be interested in these related discussions:
- Going my way: Decided to stop cancer treatments
https://connect.mayoclinic.org/discussion/going-my-way/
- When to stop treatment with stage IV metastatic rectal cancer?
https://connect.mayoclinic.org/discussion/when-to-stop-treatment-with-stage-iv-metastatic-rectal-cancer/
- Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

It so helpful that your family is onboard too. We supported my father in similar decision making (colon cancer and heart and diabetes co-mobidities). He was able to stay home with hospice care coming in as needed. We also found it very helpful to have an occupational therapist come into the home to help determine which mobility supports would make daily life a little easier such as a sitting up in bed.

That's great point — some of my care is labelled "palliative" even though I'm getting or have gotten stong, curative-intent doses of radiation and hormone therapy. The first time I saw the word applied to me I was quite upset, but the doctors explained it the same way you just did.

Perhaps a better choice would be "Palliative emphasis," "Palliative first," or similar.

Thank you so much for your posts - they are incredibly helpful and inspirational. I am currently in remission at 61 years of age from stage 4 appendix cancer. It was hard getting to this point and I don’t regret those aggressive treatments at all. I’ve got off surprisingly lightly. However, I am well aware that my cancer is likely to come back. It’s very helpful to read about these choices.

I know there will be a time where quality of life will be my overriding priority in my choices. It’s helpful to see what options are available to make those choices.

Thank you and wishing everyone all the best in their choices 🙏

We are with you we are part of the team cheering you on …… no matter where you are in this journey we are with you ….. if you cannot sleep think of your team praying 🙏🏼 and cheering you on…..we are here for each other ….. you are not alone !!!
🙏🏼❤️

Hi there, I am 76 with advanced MS. My lesions are all
In my brain so I walk. However, I have incapacitating pain with no support system and frontal lobe lesions. I had palliative care— a visit once a month by two nurses to regulate my pain and medicine. The main nurse quit her job so now I have no one. I miss the chance to see faces. I rarely go outside. I. have multiple symptoms including restless leg with seizures and can only sleep about four hours a night. I did like palliative care. I do not see a neurologist due to shortage and my not traveling I have choking and swallowing issues and invontimence. Etc