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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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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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4 ReactionsI never thought if it that way.
Thank you
Xox
Janet
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3 ReactionsWe are all in this forum because your shared feelings are possible for us all. We are all there with you. Please use this platform to stay connected with all of us. We are holding your hand and hope you can feel us there with you. ❤️
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2 ReactionsI commented to you. I hope it gets to you. ❤️
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2 ReactionsKitty1952
We are all in this forum because your shared feelings are possible for us all. We are all there with you. Please use this platform to stay connected with all of us. We are holding your hand and hope you can feel us there with you. ❤️
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7 ReactionsGini, I'm too wondering how Kitty, Wandering, Allisonsnow and other ladies are doing. I read Kitty's post and feel sad that the cancer metastasized despite AI. I came across this article and wonder if we need to have our estrogen level tested. https://www.imperial.ac.uk/news/177133/breast-cancer-drugs-stop-working-when/
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1 Reaction@ginip, I agree that it is because of Kitty that this helpful discussion continues today. Everyone's comings and goings on Mayo Clinic Connect hold a special story. For Kitty, she visited only briefly, started this discussion and didn't return after launching this discussion that has benefitted many.
@myoga, if you @mention a member's name, they will get an email notification that you've tapped them on the virtual shoulder. I'm tapping @wandering and inviting her to return to this discussion. 🙂
@myoga - I'm curious about your username. Is it a play on words "My" and "Yoga"? Do you practice yoga?
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4 ReactionsColleen, yes and yes! I used to practice yoga 5 days a week until I retired. Now, it's only once a week. But I'm now more into running and swimming. You've probably noticed my funny emai address too. It was a mistake by a cashier at the store I ordered a merchandise. I thought it was odd and funny. So I decided to keep it. I've found Mayo Clinic Connect after I was diagnosed with cancer last year. I don't have much to contribute but found comfort in reading about others ' experience knowing that I'm not the only one feeling this way. I noticed that Kitty finished 5 years of Anastrozole, yet the cancer metastasized. So I did some research and found out about cancer cells making aromatase for their own fuel. I thought we should have the estrogen level checked to make sure that whichever AI we are taking works and not just to suffer the side effects for nothing. I've been taking Anastrozole for 6 months now and only experience mild joint pain. Here is the link about AI resistant cancer https://www.imperial.ac.uk/news/177133/breast-cancer-drugs-stop-working-when/
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4 ReactionsI forgot to mention that I found the cyst during my self breast exam. The doctor ordered mammogram and ultrasound after that. The mammogram was still normal. The ultrasound detect a hypoechoic cyst which turned out to be IDC.
Thank you so very much for posting link to this AI resistant cancer! I have not read this and it certainly makes sense - article is from Jan 2017 and I wonder if there have been updates? I see my onco in October for first mammo after lumpectomy and radiation for ILC. It will be a year since my last mammo that fortunately picked up ILC but MRI showed much more detail. The ultrasound did not help. I will report back! xo
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