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.

Scott, Volunteer Mentor | @IndianaScott | Jan 18, 2018

Hello @kitty1952 I am Scott and it is nice to e-meet you here. I am sorry to learn of your battle with cancer. While I am not in the same situation as you, which is what you are seeking, my wife fought cancer for 14 years and many of the situations you describe were similar with her journey. While cancer journeys are as unique as the individual who fights on, there are some similarities. We also came to realize that often, with an individual's cancer war, the doctors can only guess at how the disease will progress and effect the individual.

She, too, was told her cancer was slow growing and it did indeed stay as that for over 12 years. Then, without warning, etc. it grew with an intense ferocity and with wide ranging impacts and effects on her.

For her last 14 months she chose home hospice for her and while it was a very difficult and challenging time in many aspects, her great fear of being in pain was kept at bay. The hospice staff was marvelous in making certain she was not in any physical pain for all those months.

I am more than happy to share anything that might help from her journey if it would be of help or succor to you.

I send you strength, courage, and peace!

Colleen Young, Connect Director | @colleenyoung | Jan 18, 2018

Hi Kitty,
I'd like to add my welcome to you. I'm am grateful that you started this discussion about treatment decision-making, hospice and managing pain. I love the title you used "Going my way". I'd like to introduce you to several other members who are living with advanced cancer and likely have confronted similar decisions about treatment or not, quality of life, and planning. Please meet @allisonsnow @wandering @djankord1 @krishh @hopeful33250.

While we wait for others to join you and Scott, I'd like to also let you know about a couple of other discussions you may be interested in reading and taking part in.

– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/
- Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

Do your children and grandchildren live close by?

krishh | @krishh | Jan 19, 2018

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

Teresa, Volunteer Mentor | @hopeful33250 | Jan 19, 2018

Hello Kris, @krishh

Thank you for sharing your thoughts with Kitty. You have certainly developed a reasonable way of thinking about your cancer and treatments. I'm glad to hear that your last scans show that most of the cancer has stayed the same.

Please keep in touch with us. Your words are an encouragement to all of us dealing with recurrent cancer and it's treatments.

Teresa

allisonsnow | @allisonsnow | Jan 20, 2018

Hello @ kitty1952

I too have been dealing with cancer on a long term basis. I was originally diagnosed 2009 and given a few months but had an excellent surgeon and 28 days of intense radiation and managed to remain stable for 5 years. while I can say I was stable and did not suffer very much from the cancer itself it has been the side effects from treatments that have caused me pain, fatigue and debilitating breathing issues have been on oxygen 24/7 for years ! I agree with you 100% that it is not death I am afraid of (I have my faith) it is the act of dying I fear. I do not want to become a burden to my family and I hope I do not suffer which I am sure can be said for all of us. It is on my mind constantly and I am quick to recognize the gifts cancer has given me also. I know that sounds CRAZY !! but I am a calmer and kinder person I show more patience and understanding. I am definetely more grateful...grateful for my friends and family,my church family and how I have grown so much closer to God. I have seen 2 additional grandchildren born. I try to be aware of the stress and heartbreak my family is going thru also so I don't whine( at least not to much lol ). I do think I could benefit from better palliative care. In the Mayo newsletter they had an article dealing with palliative care and what was available to help us. Most of which I was not aware of. With my next appt. I am going to ask for a consult. we can always use another body in our corner helping us thru the survival of our cancer and the cost to our bodies and brain and heart for that survival. Look forward to sharing more with you but I should at least try to sleep, more later.

Allisonsnow

Teresa, Volunteer Mentor | @hopeful33250 | Jan 20, 2018

Hello Allison @allisonsnow

It is good to hear from you. I've been wondering how you were doing. I appreciate your posting to @kitty1952. Your post speaks a great deal to the "gifts" of cancer, which is something we don't stop to realize. Dealing with serious illnesses does present us with gifts if we are willing to look for them.

I look forward to hearing more of your thoughts.

Teresa

Teresa, Volunteer Mentor | @hopeful33250 | Feb 23, 2018

Hello Allison @allisonsnow

I have been thinking about you and wondering how you are doing. When you have time I'd love to hear from you.

In your last post, you mentioned talking to your doctor about palliative care. Did that conversation take place yet?

Teresa

stoneypath | @stoneypath | Jan 25, 2019

Hi - I just started on this road today... needle biopsy shows maybe stage 1 cancer cells less than 2/3 cm. I am 5 years into multiple myeloma, complete remission for the whole time after treatment. On Revlimid, 61.5 yrs old and am thinking I may push for lumpectomy with no radiation and no tamoxifen. Just kind of tired and don't think excessive treatment is going to give me quality of life. Anyone out there decline radiation?

Scott, Volunteer Mentor | @IndianaScott | Jan 25, 2019

Hello @stoneypath I am sorry to read of your cancer journey, but am glad you found Mayo Connect! I am Scott and while I have only had skin cancer, my wife fought a 14+ year war with brain cancer.

My wife did decline radiation. She listened to all the medical advice at the time (she was a Mayo patient) and made the choice to not undergo radiation. In her case, and given the technology available at the time, she made her decision due to the highly likely ramifications from radiation.

Although she was often misunderstood by extended family and friends, she always undertook the calculus of quality of life vs. quantity as she and later I made decisions regarding her therapy choices.

I wish you all the very best in your journey!

Strength, courage, and peace

trese5524 | @trese5524 | Nov 1, 2019

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.