Going my way: Decided to stop cancer treatments

Posted by kitty1952 @kitty1952, Jan 18, 2018

To make a 18 yr long story short, I was diagnosed with stage 3 breast cancer in Nov. of 2000 at the age of 48. I was told it was a very slow progressing hormone receptor negative cancer that I'd had for years. After lumpectomy, chemo, and radiation I had no evidence of cancer for almost 10 years. But was diagnosed again in January 2011 with stage 2 breast cancer in the other breast. This time a hormone receptor positive type. After surgery and remaining on Arimidex for 5 years, In Sept 2016, I was told the cancer had metastasized to my thoracic spine and two ribs. I'm told this is connnected to my BRCA1 gene mutation and is the most agggressive breast cancer there is and all that could be offered is palliative care and hope for 3 more years avg. So more chemo which was much harder on me this time, and some radiation. I developed a lung toxicity in my left lung and ended up in the hospital, in and out out of ICU three times, for almost 3 weeks. I couldn't go home so I've been in assisted living on oxygen full time since July. The left lung was too damaged to get it back to normal but I did surprise all the doctors by actually pulling out of the respiratory failure and making it more than a couple months.

So we're in the new year now, 2018, and I'm still here in the assisted living. Doing pretty well except for the endless debilitating fatigue. I'm on hospice and they do an excellent job with pain control and nausea so far. I count my blessings every day for the extra years I was given to see the youngest of my four kids graduate, get married and has 3 little ones now. I'm sure I've seen all my 18 grandchildren. Well, maybe there's another possible one in the future, my son and his wife are still "discussing" having one more...lol And I've seen 5 great grandchildren, I'm sure there will be many more. I've also been blessed with all of their love and support.

I'm just wondering if anyone else has stopped all treatments like I have. I did have one more radiation treatment in November and was sick from it for about 6 weeks. I've decided it's not worth being so sick when I could be having fun visits with children and grandchildren. The cancer is just taking its course now and it seems I can feel it slowly taking over. New bone pains, new aches, sleeping longer and longer, more growths or tumors I can feel under the skin. I just don't know what to expect, it's kind of scary. I'm not afraid of death, I just hope and pray the pain stays under control and I can go peacefully in my sleep. We don't always get what we want but I hope I do this time.
Anyone else in my shoes?

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@janetamyshapiro1956

I have an 80 year old cousin who is on her fourteenth day of no eating or drinking. My heart is broken. I love her. I understand she's 'done' but I've tried very gently to talk her out of it. Think very hard. If you are having terrible effects maybe they can lower dosages or do something or even a second opinion with an integrative oncologist. Xox

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I have had rather extensive experience observing this and also had a NDI when I was 21 and in the ICU for many weeks due to swine flu. A person who is ready to die is often in an altered physiological state that bears little resemblance to the usual. This is not about rational decision making but about messages coming from deep within the body and psyche. A person who is dying and a person who is not are often speaking different languages. I know it is heart breaking, though, and feel for you.

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@miles5513

Jane, diagnosed---metastatic breast cancer in liver. Cancer originally diagnosed with PET scan, had severe backaches.

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I had written more. Cancer center is in Fond du Lac, WI. small cancer center. Part of SSM Health, was St. Agnes.

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@miles5513

Jane, I live in Lomira, WI, close to Fond du Lac, WI. Cancer clinic is part of SMS Health. Cancer clinic is small. It's part of SMS/SSM; Was St. Agnes Hospital. I appreciate your help. bemar5513 side effects from Enhertu: jitters in entire body, weak, dizzy, no appetite, can't "function"; side effects 17 days out from 2nd Enhertu treatment, lasting a long time.

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Jane, diagnosed---metastatic breast cancer in liver. Cancer originally diagnosed with PET scan, had severe backaches.

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@janetamyshapiro1956

I do care. What are the side effects and is it hormone positive? I'll be glad to do research for you. What state and city do you live in? Where is your oncologist? Is it a private practice or hospital? I'm sorry to interfere and cross a line I have no right doing but maybe there is strength in numbers and maybe someone can help.

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Jane, I live in Lomira, WI, close to Fond du Lac, WI. Cancer clinic is part of SMS Health. Cancer clinic is small. It's part of SMS/SSM; Was St. Agnes Hospital. I appreciate your help. bemar5513 side effects from Enhertu: jitters in entire body, weak, dizzy, no appetite, can't "function"; side effects 17 days out from 2nd Enhertu treatment, lasting a long time.

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@miles5513

Jane, I had drug, Enhertu, June 2nd, still having nasty side effects, it's June 20th. I don't want to have any chemo. I have metastatic breast cancer in my liver. Thank you for caring. miles5513

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I do care. What are the side effects and is it hormone positive? I'll be glad to do research for you. What state and city do you live in? Where is your oncologist? Is it a private practice or hospital? I'm sorry to interfere and cross a line I have no right doing but maybe there is strength in numbers and maybe someone can help.

REPLY
@janetamyshapiro1956

I have an 80 year old cousin who is on her fourteenth day of no eating or drinking. My heart is broken. I love her. I understand she's 'done' but I've tried very gently to talk her out of it. Think very hard. If you are having terrible effects maybe they can lower dosages or do something or even a second opinion with an integrative oncologist. Xox

Jump to this post

Jane, I had drug, Enhertu, June 2nd, still having nasty side effects, it's June 20th. I don't want to have any chemo. I have metastatic breast cancer in my liver. Thank you for caring. miles5513

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@miles5513

I, too, thinking to stop any treatments for metastatic breast cancer in my liver. I am 77 yrs. Old & drugs used have given me nasty side effects. A niece is my only family. Husband passed in June, 2021.

Jump to this post

I have an 80 year old cousin who is on her fourteenth day of no eating or drinking. My heart is broken. I love her. I understand she's 'done' but I've tried very gently to talk her out of it. Think very hard. If you are having terrible effects maybe they can lower dosages or do something or even a second opinion with an integrative oncologist. Xox

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I, too, thinking to stop any treatments for metastatic breast cancer in my liver. I am 77 yrs. Old & drugs used have given me nasty side effects. A niece is my only family. Husband passed in June, 2021.

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In the ANCO conference review put on my Living with Breast Cancer the speaker Dr Miller said they are doing more research on stopping treatment outcomes as chemo is not always the best way to go for some patients .So I think there are other people out there in your situation which ofcourse is
different for everyone. I have 11 malignant tumors in my skull and trying to
get some help with Proton therapy as it might be less invasive than
regular radiation. Am on the new drug Orserdu with not much side effects,
Has anyone used Proton therapy. Wishing you the best.

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Your equanimity in the face of adversity is enviable. Your relationships with god, family and friends will obviously continue to be rewarding. May you move forward with peace and love.

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