stop the madness

anjalima, currently facing decisions for my 2nd bout of bc, your last paragraph hit home with me. Really good advice for making many life decisions. Thank you.

Best wishes bbhere!🌸

Tamoxifen did a number on me. I ended up with cysts on my ovaries and heavy heavy bleeding. I needed to have a hysterectomy in order to stay on it. Then I went on raloxifene which caused bone issues combined with early menopause from the hysterectomy. I did get 15 years breast cancer free, but it came back last year and I decided to have a double mastectomy. No medication is without side effects. Radiation has long term side effects, It’s not an easy choice, deciding between the lesser of two evils. But you make the choice and move on. No easy answers.

This article is on the web, and you might find it interesting. I only posted part of this article. The rest is on the web. I wish you the best.

Melatonin and Breast Cancer: Is it Safe and Can it Help? Can melatonin prevent other types of cancers?
Melatonin’s potential link to cancer growth is being studied. There’s some evidence to suggest it could reduce tumor size, help chemotherapy treatments more effectively, and increase survival rates.
In 2021 (https://www.cureus.com/articles/64895-melatonina-new-prospect-in-prostate-and-breast-cancer-management), researchers looked at the effect of melatonin
on both breast and
prostate cancer (https://www.healthline.com/health/prostate-cancer)
. The study found that melatonin might slow the growth of both cancers

I admire you for giving it all such a good try! I'm with you even though I just had lumpectomy on Tuesday, after stopping my bio-identical hormone creams. After 3 days I was mostly unable to walk due to pain. I have a spinal canal condition that causes 24-7 back pain and it was so much worse, plus my entire body hurt. Could hardly get out of bed. I went back on the hormones at
1/2 dose and after 2 days I felt better. My medical oncologist wants me to go on hormone blocker therapy too. Honestly, I'd rather die than live in so much pain. Sounds extreme, I know, but it's the truth. He isn't going to be happy about this. I don't know what to do except find the balance of what I can live with. Maybe try tapering instead of cold turkey. Would the pain get better after awhile off the hormones? I have spinal osteoporosis from too many epidural steroid injections so AI's are out. I'm post menopausal but I do not want to take tamoxifen. Iwill be having radiation. How do I negotiate with the oncologist? It IS OUR bodies, OUR lives, even though we're feeling like it is now not. Thank you for reading this.. I'm open to any suggestions.

So, what are AI's?
Kay

Aromatase inhibitors. I'm new to all of this.

So I've been "in this" a little over 5 years. Over the years I have learned more from hearing everyone's stories than anything else. Here's what I've learned (and it's hard because most people don't offer their ages, types of BC, stages, etc. on this forum). But -- the success of all these post treatments (once the big stuff is done like surgery, chemo and radiation) might depend on age at diagnosis, type of bc and most of all general health. By "success" I mean being able to live with hormone blockers, etc. Health professionals suggest we eat a plant based diet, for example, but they don't always say why. They say to exercies -- again, they don't always say specifically what the benefits will be. All I know is that if I eat plant based, cut sugar and carbs I just generally feel better. I know if I'm tired, exercise will generally cure that. It was the same with chemo treatments. I truly believe (and again, this is from what I've observed from colleagues with bc cases) that those who resist post treatment measures -- the long term stuff, do not have the best outcomes. I'm sorry to say this but this is what keeps me taking that AI every single day and living with thinning hair, dry skin, aches and pains here and there. I own a business and have another profession I love. I guess at some point I decided to live and just deal with the discomfort around the edges. That and getting a second opinion about long term treatment when necessary.

@krisrwalters as you decide on hormone blockers, I hope you will see a doctor about how to get off the bioidentical hormones. I would think that with a hormone-driven cancer, that is very dangerous. Surgery does not necessarily remove every cancer cell from our bodies.

I did 5 years of an aromatase inhibitor and had pretty severe osteoporosis before starting. Most people do Reclast or Zometa for bones during treatment but my doc didn't want me to due to afib (that concern has since been disproven) so yes by bones got worse. I did Tymlos after my cancer treatment and got my bones back to , actually better than, precancer levels. Tamoxifen is, as you said, another option.

I assume you are having an Oncotype Dx test done. That will give you a good idea of the risks with and without anti-hormone treatment (and whether chemo would be of benefit). Generally anti-hormone treatment cuts risk in half.

I had a rough menopause, but the aromatase inhibitor wasn't too bad for me. I made sure to exercise (walking, tai chi) at least 35 minutes. The first 20 minutes hurt but if I kept going, things got a lot better.

Hi! @krisrwaters:

I really admire your courage and strength, for if I read it correctly: you just had lumpectomy on Tuesday! My thoughts and prayers are with you on the journey ahead. In fact, all our comrades are alongside you, you'll never be alone!

How to negotiate with the oncologists? In my own experience - even though I only started on this journey 4 months ago, I tried to read/research as much as I can and I truly learnt a lot from the experienced comrades from the discussions of this forum; asked my oncologissts to provide me with the bottom-line pros & cons of each treatment and thus made my own informed-decision based on those. Would the pain get better? I frankly don't know; but I've prepared to strive on to face all the challenges ahead to conquer the disease of cancer, and I am sure you will come out of this tunel of darkness healthier, happier with more joy and contentment, my friend!

Prayers and best wishes to you all!