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?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Mentor
Scott, Volunteer Mentor | @IndianaScott | Nov 3, 2019
In reply to @trese5524 "It seems that your shoes would be very hard to fill. I'm glad you have been..." + (show)
@trese5524

It seems that your shoes would be very hard to fill. I'm glad you have been able to see your children grow up and have their children. I hope you are resting a lot after going through your treatment, as long as it takes. I'm in a similar but different boat. I was given Tamoxifen to take for my hormone positive breast cancer. After 8 months it was discovered that I have a blood clot in the bottom of each lung from the Tamoxifen Now I'm on blood thinners with their side effects. I have an upcoming appointment with the cancer doctor who will be expecting me to now go on aromatase inhibitors. I'm not so sure. If I was young and had little kids maybe of course I might fight the cancer more. I have degenerative disc disease, fibromyalgia and arthritis I drink ginger tea which is supposed to affect BC stem cells. I guess the next ultrasound will tell me what is going on without Tamoxifen. I have been laid low several times with bad fibromyalgia attacks as well as feeling angry and depressed. I get over it by trying to get into fresh air and looking after our pets and the horses. I try to see our kids as often as possible and find the planning of our next meeting really helps me with incentive and trying. I expect that I will pass from this cancer once it spreads. But going through hell to stay alive doesn’t appeal to me. I have a lot of responsibilities and couldn't manage on the chemo and radiation therapy. The cancer pills brought me closer to death as I am closer to death now with the supposedly rare blood clots from the Tamoxifen. Being between a rock and a hard place with my choices, I have decided to hang on to my inner happiness as my life has been mostly nice. I never once imagined getting cancer nor making tough decisions about being on deadly treatment or just living life as I know it. I will be hoping to use the MAID euthanasia service when I get further along. In the meantime, please turn the music up because it's time to exercise and dance. I'm still alive and trying. Best wishes for everyone who is trying to get through something really hard. Focus on your own path because we all have different conditions. I hope I am not attacked for my view. It seems that I am the one living in this body but it doesn't stop people from criticism. Everything hurts when the fibromyalgia kicks up and my lungs aren't great. Sometimes you just think about the way out. I don't think about recovery like so many. But I still have happiness and a desire to help others.

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Hi @trese5524 I am sorry to read of your health challenges. My wife fought brain cancer for over 14 years. Her constant and consistent guiding principle was ‘quality of life over quantity’. She chose each of her treatments, etc. with this in mind.

I hope you are feeling well today and the sun is shining wherever you are.

REPLY
donotgiveup | @donotgiveup | Nov 7, 2019

I was told Ihave stage 4 lung and really did not see the point of treatment, have always thought
god has a place for me and would get to see all my loved ones again and be with them and in all of Gods glory. Keep your chin up,he loves you.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 7, 2019

Hello @donotgiveup and welcome to Mayo Connect. I appreciate your sharing your thoughts about treatment for stage 4 lung cancer. We have many members living with advanced cancer. Here is link to some of those discussions. Just click on the link and you can see what other members are saying about their diagnosis of advanced cancer.

https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

As we all well know, the decision to treat (or not) advanced cancer is an individual choice we all have to make on our own. If you are comfortable doing so, would you share a bit more information about yourself, i.e. is this your first diagnosis of cancer or has there been other cancer treatments in the past? Do you mind sharing your age?

I would like to invite @merpreb, who is also dealing with lung cancer. Her story might offer you some helpful thoughts.

REPLY
Mentor
Merry, Volunteer Mentor | @merpreb | Nov 7, 2019
In reply to @donotgiveup "I was told Ihave stage 4 lung and really did not see the point of treatment,..." + (show)
@donotgiveup

I was told Ihave stage 4 lung and really did not see the point of treatment, have always thought
god has a place for me and would get to see all my loved ones again and be with them and in all of Gods glory. Keep your chin up,he loves you.

Jump to this post

@donotgiveup- Good morning and welcome to Connect. I am a 22 years survivor of stage 4a lung cancer. My major fear is dying from cancer, yet here you are not trying to stop it. I can not discuss any religious beliefs on Connect. However I'm glad that you are finding solace in your beliefs. What kind of cancer do you have and how long have you had it? I'm 73 years old and am breathing well, have no pain and go about my life as if there is no tomorrow filled with more tumors.
How have you made your decisions? Is it quality of life over quantity?

REPLY
1 reply
donotgiveup | @donotgiveup | Nov 7, 2019
In reply to @merpreb "@donotgiveup- Good morning and welcome to Connect. I am a 22 years survivor of stage 4a..." + (show)
@merpreb

@donotgiveup- Good morning and welcome to Connect. I am a 22 years survivor of stage 4a lung cancer. My major fear is dying from cancer, yet here you are not trying to stop it. I can not discuss any religious beliefs on Connect. However I'm glad that you are finding solace in your beliefs. What kind of cancer do you have and how long have you had it? I'm 73 years old and am breathing well, have no pain and go about my life as if there is no tomorrow filled with more tumors.
How have you made your decisions? Is it quality of life over quantity?

Jump to this post

Iam 67 yrs. this saturday. Just got though with the 1st round of treatment, the side effects are not too bad yet. Have a very kind and loving wife, she understands how this may go. We lost my father her father and step father last August dam near the day I was told the news. I just talked to her right before reading your note, she sayes she would tell me when to give up.all I,ve ever done was and is for her. Will not regrate ever going to see my God for I know he loves me.

REPLY
1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Nov 8, 2019
In reply to @donotgiveup "Iam 67 yrs. this saturday. Just got though with the 1st round of treatment, the side..." + (show)
@donotgiveup

Iam 67 yrs. this saturday. Just got though with the 1st round of treatment, the side effects are not too bad yet. Have a very kind and loving wife, she understands how this may go. We lost my father her father and step father last August dam near the day I was told the news. I just talked to her right before reading your note, she sayes she would tell me when to give up.all I,ve ever done was and is for her. Will not regrate ever going to see my God for I know he loves me.

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@donotgiveup - This is so heart warming. Those were a lot of losses for one family. I wish you very well on your cancer journey and I hope that as your chemo proceeds that the side-effects stay mild. How many more weeks do you have?

REPLY
dianamiracle | @dianamiracle | Nov 9, 2019

Not quite in your shoes, but the constant chemo was making me quite sick and I stopped that. I eat fruits and veg’s, and follow a plant based diet, with fish a couple of times a week and organic eggs about 4 times a week. NO dairy, no meats, no processed foods! Try and buy organic fruits and veg’s. This may help you feel less aches and pains. Try “golden milk tea” (recipes on line) and enjoy it! Best of wishes and prayers

REPLY
1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Nov 9, 2019
In reply to @dianamiracle "Not quite in your shoes, but the constant chemo was making me quite sick and I..." + (show)
@dianamiracle

Not quite in your shoes, but the constant chemo was making me quite sick and I stopped that. I eat fruits and veg’s, and follow a plant based diet, with fish a couple of times a week and organic eggs about 4 times a week. NO dairy, no meats, no processed foods! Try and buy organic fruits and veg’s. This may help you feel less aches and pains. Try “golden milk tea” (recipes on line) and enjoy it! Best of wishes and prayers

Jump to this post

@dianamiracle- Hello. Please help me out, who are you responding to? An @before someone's user name helps with identifying this.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 9, 2019
In reply to @trese5524 "It seems that your shoes would be very hard to fill. I'm glad you have been..." + (show)
@trese5524

It seems that your shoes would be very hard to fill. I'm glad you have been able to see your children grow up and have their children. I hope you are resting a lot after going through your treatment, as long as it takes. I'm in a similar but different boat. I was given Tamoxifen to take for my hormone positive breast cancer. After 8 months it was discovered that I have a blood clot in the bottom of each lung from the Tamoxifen Now I'm on blood thinners with their side effects. I have an upcoming appointment with the cancer doctor who will be expecting me to now go on aromatase inhibitors. I'm not so sure. If I was young and had little kids maybe of course I might fight the cancer more. I have degenerative disc disease, fibromyalgia and arthritis I drink ginger tea which is supposed to affect BC stem cells. I guess the next ultrasound will tell me what is going on without Tamoxifen. I have been laid low several times with bad fibromyalgia attacks as well as feeling angry and depressed. I get over it by trying to get into fresh air and looking after our pets and the horses. I try to see our kids as often as possible and find the planning of our next meeting really helps me with incentive and trying. I expect that I will pass from this cancer once it spreads. But going through hell to stay alive doesn’t appeal to me. I have a lot of responsibilities and couldn't manage on the chemo and radiation therapy. The cancer pills brought me closer to death as I am closer to death now with the supposedly rare blood clots from the Tamoxifen. Being between a rock and a hard place with my choices, I have decided to hang on to my inner happiness as my life has been mostly nice. I never once imagined getting cancer nor making tough decisions about being on deadly treatment or just living life as I know it. I will be hoping to use the MAID euthanasia service when I get further along. In the meantime, please turn the music up because it's time to exercise and dance. I'm still alive and trying. Best wishes for everyone who is trying to get through something really hard. Focus on your own path because we all have different conditions. I hope I am not attacked for my view. It seems that I am the one living in this body but it doesn't stop people from criticism. Everything hurts when the fibromyalgia kicks up and my lungs aren't great. Sometimes you just think about the way out. I don't think about recovery like so many. But I still have happiness and a desire to help others.

Jump to this post

@trese5524 that is certainly a tough situation to swallow, that the drug that was suppose to reduce breast cancer recurrence has created blood clots in your lungs. It is anticipated that the blood thinners will help move and remove the blood clots? There are several discussions in the Breast Cancer group where members discuss the pros and cons of aromatase inhibitors. Here are a couple that may interest you:
- Conflicted on taking medication https://connect.mayoclinic.org/discussion/conflicted-on-taking-medication/
- Aromatase Inhihibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/

There are many medical and personal choice factors to consider and I can tell from your message that you are doing just that. I also admire the pragmatic approach for looking into MAID and at the same time turning up the music and dancing. For anyone who is not familiar with the acronym MAID, it is used in Canada and stands for medical assistance in dying.

As they say, Trese, dance like no one is watching!

REPLY
merine | @merine | Jun 26, 2020

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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