1. < Breast Cancer

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 28, 2020
In reply to @merine "Hello Kitty. I understand your reasoning for “doing it your way”. I’m in a quandary right..." + (show)
@merine

Hello Kitty. I understand your reasoning for “doing it your way”. I’m in a quandary right now about whether to proceed with further treatment. I was diagnosed with stage IV Primary Peritoneal cancer which is being treated like ovarian cancer. I was diagnosed in August, 2017, and have since gone through two types of chemo treatment, anddebulking surgery. During this time, I’ve had multiple side effects from the chemo that hospitalized me 3 times for a week at a time. The initial treatment of carbo platen and Taxol were quite effective but all subsequent treatments, less so. I’m most grateful for the time I’ve been given since diagnosis. I was told I likely had only 18 months to live and it has been twice that. The tumors/masses are growing and spreading as are multiple cancerous lymph nodes and the only option after Doxil failed to diminish the cancer growth is Topotecan which I’m told and have read there are some horrible side effects associated with it. I’m in a quandary as to whether to proceed. I’m told I have less than six months to live if I stop treatment altogether.

We’ve met with the case manager and social worker for Hospice and I feel very comforted by all that will be available. Two of my greatest fears is not being able to manage the pain and dying alone. I don’t want to be admitted to a hospital because of what is happening with the corona virus. My fear is once in the hospital I won’t be able to return home and my family would not be able to visit me. I’ve seen far too many news clips of people saying goodbye via Skype or FaceTime. I’m not being critical of either, it is a blessing in some ways, but heartbreaking as well.

Does anyone have any experience with Topotecan? It would help me to know what others have gone through and how effective it was. I have an appointment on Tuesday to give them my decision of GO or NO GO. If NO GO, I’ll go directly into Hospice.

Thank you Kitty for starting this thread. I think I’m at the “preferring quality of life“ vs. quantity of life. Of course I’d like both but as an old song goes: “you can’t always get what you want, but if you try real hard, you can get what you need...

Love and prayers to all who are on this journey.

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@merine, in these times of COVID-19, there is an extra layer of complexity to your decision. I hear your greatest fears of "not being able to manage the pain and dying alone." I'm confident that hospice care can assure you that your pain will be managed. They specialize in pain management. Be sure to ask them questions now AND tell them your wishes and fears about pain.

COVID is an unknown for all of us unfortunately. Thus I echo @susandc's question about whether you are seeking residential hospice care, where you live at a hospice facility/home or home hospice, where palliative and hospice care come to you in your home. If home hospice is an option for you, then it may be easier to be in control of who is at your side through this journey. What options are available to you?

REPLY
cwm1 | @cwm1 | Jul 2, 2020

Just wanted to introduce myself, my name is Connie and I am 70 years old with stage 4 triple negative breast cancer with Mets to my lungs and spine. I am fortunate as I have a husband who takes care of everything needed. I’ve had several issues this year caused by Keytruda and had to get rid of that. But it just took so much out of me that now every little thing turns into something more and I’ve missed a lot of chemo. I have a PET scan in a few weeks that I just know won’t be good as my cancer markers are rising too. They’re still low bur rising and that scares me. I have always said quality over quantity and I hope I can stick to that when the time comes. I don’t want this to end up killing my husband too.

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1 reply
walisky | @walisky | Jul 3, 2020

I'm sure that your husband is stronger than you realize and he's showing his love during this awful time.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 3, 2020
In reply to @cwm1 "Just wanted to introduce myself, my name is Connie and I am 70 years old with..." + (show)
@cwm1

Just wanted to introduce myself, my name is Connie and I am 70 years old with stage 4 triple negative breast cancer with Mets to my lungs and spine. I am fortunate as I have a husband who takes care of everything needed. I’ve had several issues this year caused by Keytruda and had to get rid of that. But it just took so much out of me that now every little thing turns into something more and I’ve missed a lot of chemo. I have a PET scan in a few weeks that I just know won’t be good as my cancer markers are rising too. They’re still low bur rising and that scares me. I have always said quality over quantity and I hope I can stick to that when the time comes. I don’t want this to end up killing my husband too.

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Hello @cwm1 I see that you’re not new to Connect and I’m glad that you’ve returned. Your breast cancer sounds pretty extensive and you’ve missed some chemo. Was that due to side effects of the Keytruda? You said that “every little thing turns into something more.” What did you mean by this? Have you been able to have some quality time or has it been a really tough year?

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cwm1 | @cwm1 | Jul 3, 2020

I had a reply typed and it disappeared on me. Yes, almost all of my problems were caused by Keytruda. I can’t type the whole thing out tonight again. My son, dil, and 5&7 year old grandchildren came today for a week and I have got to get to sleep!

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1 reply
debsid | @debsid | Jul 14, 2020
In reply to @krishh "Hi Kitty, As Colleen mentioned, I'm also dealing with advanced cancer. I'm in my fifth line..." + (show)
@krishh

Hi Kitty,

As Colleen mentioned, I'm also dealing with advanced cancer. I'm in my fifth line of chemotherapy treatment, and it is pretty much the last resort. There is one trial I am eligible for, but I have not decided if I'm going to do it yet. As long as this line of treatment is working, I will stick with it. Just had scans this week and most of the cancer stayed the same - one spot showed some growth, but not substantial. So while I haven't had to make the decision you have already made, I know the day is coming so it weighs heavily on my mind.

Like you, I am not afraid of death. I'm more afraid of living in pain and extreme illness. I have no children or grandchildren. I worry about being a burden on my sisters who are my support system. Wishing you pain free days and a peaceful passing when that time comes.

Kris

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Praying for you

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 15, 2020
In reply to @cwm1 "I had a reply typed and it disappeared on me. Yes, almost all of my problems..." + (show)
@cwm1

I had a reply typed and it disappeared on me. Yes, almost all of my problems were caused by Keytruda. I can’t type the whole thing out tonight again. My son, dil, and 5&7 year old grandchildren came today for a week and I have got to get to sleep!

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@cwm1 Are you totally worn out by the grandchildren? Was it a good visit? I’m so anxious to see mine, hoping we can go for their birthdays in August! Ages 4 and 7.
Good luck on the upcoming PET scan

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semeon | @semeon | Jul 15, 2020

As a last effort why do you not try Rick Simpson Oil Phoenix Tears. There is lots of info on the internet and a defined protocol on how to take it. There have been remarkable results and really no side effects accept the usual things and you will sleep well. Also really helps with radiation side effects.

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debsid | @debsid | Jul 15, 2020

Also taking full spectrum cbd oil enhances the affects of rso and helps with sleep, anxiety, depression etc. GUUD makes 6000mg cbd for cancer patients

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1 reply
Nancy, Alumna Mentor | @1nan | Jul 17, 2020

Dear donotgiveuup. I hope you aren't second guessing yourself. You have a beautiful story of being smart and brave that is sure to give strength and wisdom to your beautiful family in years to come. You ask if anyone else has been there. I am there although my situation is different. I made it to remission for multiple myeloma after initial diagnosis in 2004, and a history of watching, waiting, treatment, and several changes in treatment. Because maintenance chemo is not without significant side effects it was necessary to go off treatment and I have decided not to have treatment in the foreseeable future. If/when it returns I will again be faced with that decision of choosing quality of life over quantity. I am 79 years old with a family similar to yours. Nine grandchildren and a fifth great grandchild on the way. A beautiful life, yes? But like you, cancer has taken its toll and I will give serious thought to how I want to end this saga. I admire you for rationally considering how you want to do this. It is not giving up, but rather choosing the direction of your path as you have done over the years. We are the ones who own the path and own the direction. Your faith in past decisions will get you through the new choice. Like you, no fear here. Just gratitude for all in my life. Is your family supporting you in your effort to stay "in charge'?

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