Topic: My choice--refusing treatment

Forum: Alternative Medicine — This forum is a safe, judgement-free place to discuss Alternative medicine. Alternative medicine refers to treatments that are used INSTEAD of standard, evidence-based treatment. Breastcancer.org does NOT recommend or endorse alternative medicine.

Posted on: Jan 24, 2017 07:34AM - edited Jan 27, 2017 07:00PM by Monetswaterlillies

Posted on: Jan 24, 2017 07:34AM - edited Jan 27, 2017 07:00PM by Monetswaterlillies

Monetswaterlillies wrote:

Hi everyone,

My post won't be too popular but I'm entitled to feel the way I do--to fight cancer or not. Im 50 and recently dx with IDC. Clinical staging is in the works but regardless of the results, I just don't care to treat it. I have my reasons, and would like to talk with others who feel similar feelings.

Thanks so much, everyone.


Dx 1/20/2017, IDC, Right, Grade 1, ER+/PR+, HER2-
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May 13, 2022 12:43PM exbrnxgrl wrote:

edge,

That is one one of the crazy making things about bc; two people can seem to be very similar in terms of dx but their treatments, even if they are the same, can effect them differently. It really is frustrating. Again, I want to emphasize that cancer confined to the breast won’t kill you. It’s the metastasis to other organs that is incurable and fatal for almost all. Lower stages are trying to prevent mets. At stage IV we’re just trying to keep the weeds down before they destroy the garden.

Taking an AI only is rarely the path most people with mets take these days. As I mentioned earlier drugs that most mbc patients take with an AI were not approved 10 1/2 years ago. My mo is fine with me just being on an AI as it has worked well for me. She sees no reason to add Ibrance or anything else. I think it’s worth asking about given that you have limited bone mets. Take care.

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May 14, 2022 02:57AM - edited May 14, 2022 03:08AM by jons_girl

edgeofnoreturn: Sorry for my delayed reply. Yes I'm NED since surgery. No treatment except surgery. Exbrn is right we can't compare each others dx's. We are all different which is true. I am thankful it hasn't returned for me but it may return and I'm ok with the decisions I've made. I've actually read many stories now of people here who have had awful AI experiences. So while it may not be the best comparison as exbrn says, it does show us that women have a lot of trouble with AI's But not all women do I'm sure. It's great exbrn doesn't have issues with her AI.

I'm a pretty strict plant based eater now. And I'm trying to actively remove stress from my life. The stress factor is something that really makes a difference in my life. I'm still learning how to make my life much less stressed. I don't think all of us on this site that have gone through cancer are type A very driven people. But I've met a lot on this site who are that way. I tend to be very driven it's not a bad thing But it's not good for a persons health to be so driven and busy that you can't take time to relax and enjoy life. Im learning to learn to cut back in my life.

Im sorry to hear about what your going through with your fibro and Mets. 💕That's a lot. A friend of mine has fibro.

Our dx were somewhat similar the first time you had cancer. But my grade and stage were different. Grade 3 is supposedly much more aggressive than Grade 1. I do think there are people in this forum however where their stage 1 cancer returned. I Don't know much about howgrade plays a role in Mets and returning cancer?? I'm definitely not a expert.

If your MO and RO dismiss you, I'd find new ones. You should have support and if they don't fit that description there are many others to choose from usually

We are here for you. Chat anytime. Sending love andsupport to you💐💐

Edge and exbrn have a great weekend


Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/4/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 14, 2022 03:36AM exbrnxgrl wrote:

Grade is an indicator for aggression but like almost everything related to bc, it’s not set in stone. Both my breast tumor and my bone biopsy were grade 1, so yes, even grade 1 can metastasize. However, once you have mets, the grade becomes less important as the only goal at that point is to contain the progress of mets. Metastatic breast cancer and early stage bc are different animals.

To be clear, I do have some se’s from AI’s which is why I have switched between all three. My hands and knees experience joint pain but I manage with naproxen sodium and cannabis so it has not had limiting effects on my everyday life. I taught first grade for years before my recent retirement and still sub 2-3 days a week. Obviously I couldn’t do these things if the AI effects were crippling. Clearly the best se is being alive and mostly living a normal life for over 10 years with no progression.

As for diet, I do what a lot of stage IV folks do. I eat what I want when I can. I follow no regimens or protocols and am not compulsive in any of my health habits. This doesn’t mean I live on candy bars and pizza, it just means that moderation in all things works for me. Take care all.


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May 14, 2022 06:11PM - edited May 14, 2022 06:13PM by jons_girl

Exbrn: you don't have listed under your posts about your dx both times. Sorry if I'm being nosy. Can you share that with us? That's interesting to me that both dx you were grade 1. What stage were you at the first dx? And we're you positive er and pr and her2-? If you don't want to share that's ok. Just wondering.

Also, if you don’t mind sharing, how was your Mets found? Maybe you shared that already on this thread.

I'm sure there are lots of people who do just fine on AI's. No worries. That's good you don't have bad se's. Some women do have that.
For me, it was the right decision to not go on tamoxifen at the time I was pre menopausal. I'm post now.

Yeah I am a moderation diet person too. I am plant based. But occasionally eat stuff I wouldn't normally eat. I try to eat as healthy as I can tho most of the time.

Hope everyone has a great week!

Breast cancer at age 49. Felt tumor. Wasn’t caught on mammo even after feeling tumor. Ultrasound caught my cancer. Dx 6/2017, IDC, Left, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 7/4/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal
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May 15, 2022 03:07AM - edited May 15, 2022 03:18AM by exbrnxgrl

I only had one dx, but let me explain… I had a bilateral mx and was staged IIB. Six weeks later, on an unrelated PET, my bone met was found and then confirmed by biopsy. Since it was 2cm and a grade 1, it was agreed that I was actually stage IV de novo and never actually IIB. Yes, I am ER and PR + as well as HER2-.

With respect to AI's, of course I realize that not everyone does well on them. My point was that if one is stage IV, like edge of no return, we are talking about very different situation than lower stages. At lower stages we are not talking about a terminal disease, at stage IV we are! Stage IV is incurable and folks like me are outliers.Stage IV is a whole different animal than lower stages.

I removed my dx line because it was a mess after the site update. Too lazy to try to re-enter it. You are welcome to ask me anything as I am very open about my mbc.

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