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Going my way: Decided to stop cancer treatments
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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While I had a different situation in that at a point in my treatment of radiation and chemo, I found the chemo so debilitating that I took only 3 of the 6 sessions. Though the two are different, they represent the same values: we all have a point where either that little voice tells us or we have just had enough and we have the right to say, “stop”. You need only answer to yourself, ironically the same person who is undergoing the dis-ease. Bless your decision and find some joy in the day. With warm regards,
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7 Reactions@agelessspirit- As a long-time Lung Cancer survivor, I know that one day I will have to make this decision unless I am felled by something else. I think, from reading a lot of posts on Connect and other places that there does come a time when we sense when enough is enough.
Did you have an aha moment, separate from the debilitating side effects that were part of this decision?
How did you handle this with your family?
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5 ReactionsSince the tumor removed and treated with irradiation was in my throat, eating was already difficult if almost not possible. The chemo added nausea and counter indicated eating at all. I was throwing up and any movement of the throat (like eating) caused gag reflex. It was keeping me from eating and also, leaving me so debilitated I was facing not being able to even get myself to radiation treatments. Talked to oncologist who explained percent of survival with and also without chemo. It was truly very low per treatment if i figured right. I just knew it could kill me. I was already so far gone. Maybe it wouldn’t have, but I did feel that inner knowing. I had done as told up to that time. I stopped after talk with spouse and even my grown children. They must have felt my certainty as no one pushed back. I am almost at 2 year mark for cancer free. This was the standard they gave me for likely full survival of HPV related throat tumor. Or so I understood it to be. So, God willing, it was what was needed to get me thru.
I have to say that I am blessed with a strong sense of faith. I ask God for guidance as well as my inner voice. Maybe they are the same or first cousins.
I do think our innate selves are well informed and cued appropriately.
Thanks for asking. I imagine you will know. Hoping you dont have to know. With love,l
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9 Reactions@agelessspirit- Thank you for responding to such a difficult question. I hope that this holds true for people who don't ask for guidance. Bless you.
Have you called upon hospice to help?
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3 ReactionsI have metastatic breast cancer in my liver. Had 3 different treatments. Decided to stop all treatments. God's will & time. I am 77 yrs old. June 17, 2023
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9 ReactionsI am sad to learn that you are terminating treatments. Even though we all think about this all the time, the actual event is still something different. Are you thinking about hospice care or do you have family that are helping you now.
How are you handling this decision?❤️
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3 Reactionsannieoakley....I am "right" with God . I live with my niece. Husband passed away 06/21. I have 2 younger sisters, San Diego & Port Orange, FL. Not much support. Cancer is not curable + fact I am 77 yrs. Old. Thank you for caring & your thoughts.
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8 ReactionsSomehow I missed this thread until the recent posts--I'm finding it helpful. I have a rare NET in my breast--life expectancy maybe another year or two. I turned down chemo but did a lumpectomy, 3 weeks radiation, and take an AI. None of this was too stressful. When it spreads I've decided to not treat it, just as I decided to go for moderation the first time around. I have numerous co-morbities so nor a great life expectancy without cancer.
I took care of my first husband who died after surgery when he was 36. That experience really made me want to focus on the family as a unit and to not take my caregivers for granted. 10 months since diagnosis have been well spent seeing friends, weekly visits with my grand-daughter, a lot of communication with my husband, daughter, and best friend. I've worked to clarify fiscal things, my house, and possessions. It has been a beautiful opportunity. I've always planned/hoped to go into hospice as I was a hospice volunteer and also did direct care for a friend and my second mother-in-law. I've learned we're alive even when dying--and there is unlimited opportunity for connection, spiritual growth, and yes even autonomy. Regards to everyone.
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