No treatment, anyone else?

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SnarkySeaSiren
SnarkySeaSiren Member Posts: 4
edited September 2021 in Stage IV/Metastatic Breast Cancer ONLY

Hello sisters. I am hoping to meet someone on a similar journey. I am also hoping that my choices will be respected here because the feeling of loneliness is becoming overwhelming.

After an initial diagnosis and treatment 5 years ago (chemo, radiation, herpecin), I have recently have had malignant pleural effusion, which when biopsied, revealed my breast cancer is back, is Stage IV.

Here's where I feel my choices become a bit different than many people on here from what I have read so far. I stopped going to the doctor. I chose not to get scans to see if I have mets in my bones, brain, liver in addition to my lungs. I chose to come home, to my family, to my home and let nature take it's course. My reasons are many, but primarily just that I have had several other medical issues throughout my life and I want to be DONE with doctors, hospitals, etc..

Anyone else choosing this path on here? My family, friends, husband don't understand. They go back and forth between being angry and sad and mostly just confused. But, this is one time I am standing firm with MY choice.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2021

    This is indeed not the usual choice. I'm curious to know how you arrived at it. And if you explained how you feel to an oncologist if they were willing to offer an option that would minimize side effects and time spent at medical appointments, and still give you some more quality time with your family -- perhaps taking only a Her2 directed therapy in pill form (Kanjinti) and no chemo. Or a low dose of a pill chemo that many find very doable (Xeloda). Will you accept home hospice care to ease things for you and your family? Letting nature take its course could be quite difficult.

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited August 2021

    As a medical provider - I respect every person's decision to care for themselves the best way that they are able to. The one thing that is important to me, though, is that the person making the decision has all the most up to date and accurate information possible. I know this disease is scary as all hell. When we here the words stage 4 we start to plan our funeral. I would like to say my oncologist told me I had 1-5 years to live when I was first diagnosed. I am almost at year 5 now and just starting chemo now. It is all such a personal choice. Can I deal with chemo and the reactions for another 10 years, I am not sure. BUT what I do know is there are so many drugs in available to us that allow us to still have a pretty good quality of life (I ran a my own clinical practice and went to school for a doctorate with stage 4).

    So - that all being said, I still support you. I just hope you have gathered all the info you possibly can to make sure you are truly comfortable with not seeking treatment. My biggest concern is that as the cancer progresses, we get sicker, and we need some treatments to help our bodies...and I wonder if that may be the case for you - something to consider if you want to have a completely drug-free end of life experience.

    Sending a hug. Please feel free to reach out to us all for any info that we can offer. So much medicine going on in the world of MBC...its quite astounding actually.

    All my best,

    LoveFromPhilly

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  • SnarkySeaSiren
    SnarkySeaSiren Member Posts: 4
    edited August 2021

    Thanks for the response. With my malignant pleural effusion, the most time we can gain, according to both oncologists I have talked with is 3-4 months. I've lived a beautiful, long (obviously never long enough) life and don't care to "fight" my cancer for the time I have left, also likely 3-4 months. So though that would "double" my days, not interested. Additionally, I do have some cardiac issues that limit my treatment options without causing significant other side effects on that side. I am currently talking with my doctor about being set up with hospice once we are at that point. I am blessed to have several caregivers nearby to share the load I currently require as I am unable to get around without assistance at this point.

    Reading this board, and just about everything out there, I know it's mostly "what else can I try to live", but I can not explain the peace I have knowing my time may not be long, but it will be mine. If I am being quite honest, I have gotten to the point that I have been poked and prodded so much.

    I am really looking to connect with other folks that have chosen this path, but I am thinking most of us aren't out on forums. Even if someone has seen a group to support each other through end of life, I would love the suggestion.

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  • SnarkySeaSiren
    SnarkySeaSiren Member Posts: 4
    edited August 2021

    Thank you for the thoughtful response. I should note I am already at the point I am housebound (chair/bed most of the day), on oxygen 24/7, unable to walk without assistance, bathe without assistance, etc.. I am unable to read or write and some days can't even focus on television. On my very BEST days, I am able to sit and visit with my friends and family, but I still do it from one of the two rooms I live in at this point. So, the quality of life is very different. I have been blessed with having many Stage 4 THRIVERS in my life over the years, women who have lived and many who are still living over a decade with Stage 4, so in that regard, I know it's not a death sentence any more for everyone, but again, with my co-morbidities and malignant pleural effusion, peaceful acceptance feels good.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2021

    I hear you on not wanting to be in a "fight". That sounds so stressful and I don't identify with that idea much. I just put up with treatments because for me it is worth it because I can still enjoy my life and my family. I know there may come a time when time gained is not worth it. There is currently a discussion and studies among cancer care providers about the idea that many patients are on chemo way too close to end of life, and that quitting it sooner gives them better quality of life as they near the end. That said, I would want to be really sure what the doctors mean about 3-4 months. I would ask to know the *range* of survival times. If 3-4 months is an average, that means some people get longer, and that number may not reflect well what could happen with you personally, with treatment. Regarding hospice, I have read that many people begin with hospice care too late, not taking advantage of how hospice can improve a person's time.

    Edit: Ah, we were posting at the same time. There is a thread here called "A place to talk about death and dying".

    https://community.breastcancer.org/forum/8/topics/770023?page=180#idx_5371

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  • Nkb
    Nkb Member Posts: 1,436
    edited August 2021

    snarky- have you read Being Mortal? You can get it on audible too, helpful and supportive for trying to figure out when it is time to stop treatment. Hospice was wonderful for my mom.

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  • booboo1
    booboo1 Member Posts: 1,159
    edited September 2021

    Hi Snarky,

    I am one who has stopped treatment for many of the same reasons you have listed. I’ve tried many different chemos (not all listed on my profile), and it was actually my oncologist who suggested that there were no others that would give me different results. So we agreed enough is enough.

    I have never (yet) regretted my decision. I had not been on treatment since May of 2021, and I am finally starting to feel like my old self. I am actively engaged with a hospice group, and agree it is so good to get involved sooner than later. The verbal support alone is reason enough, let alone no issues with getting any drugs that I need to stay as pain free as possible. I currently only need to see my nurse every other week, but she will come as often as I ask or need her. I will certainly need her more often as time progresses.

    What I find most valuable is the straight talk. I can ask them anything with regard to death and dying, and they don’t shy away from the subject. They look me straight in the eyes and give me the answers I need. It has also made a HUGE difference in how my DH has been able to cope. He no longer feels alone, and knows that when my time comes, he just calls them, and someone (my nurse or whoever is on call) is here within 10 mins. I think all of the unknowns were what was driving my DH to drink so much. He is no longer finding the need to cope—he now has the support he needs too.

    Please reach out if there is anything else you would like to know or ask. I am always happy to help another MBC sister or brother.


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2021

    I am not yet at the point of no treatment but as it’s likely inevitable I want to learn about and understand what options are out there. Booboo, I would love a situation like you’ve described particularly with respect to straight talk. Take care.

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