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stop the madness

Breast Cancer | Last Active: Mar 17 7:19pm | Replies (132)

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@krisrwalters

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.

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Replies to "I admire you for giving it all such a good try! I'm with you even though..."

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!

You may be okay on tamoxifen if you’re postmenopausal. Tamoxifen binds with the receptors blocking estrogen only in the breast. It acts as an agonist in all other body parts - which means it provides estrogen-like action in the bone, heart, brain, other organs, - and unfortunately in the uterus which is a rare problem for those who’ve had PCOS or uterine lining thickening in the past.

I would think stepping down from the estrogen dose you were on would be less painful than going cold turkey - like the process to go off steroids. But it would depend on the type cancer you had. With HR+ invasive cancer, or cancer that has moved to the lymph nodes you’d probably want to get off estrogen pretty quick. Any cells left in your body, or had moved on undetected in the nodes would continue to feed off the estrogen.

Hi. I commend for the hard work of thinking through all the treatments offered, looking for more information and questioning. As to negotiations with oncologists, I can’t tell you what to do but I can tell you some of my experience. You are right. It is your body and your life. At the age of 72 I was diagnosed in December 2021 with MBC to the bones. I was in great health and on no medications. I have been eating plant based for 8 years. I was reluctant to put the FDA approved poisons in my body. I did a lot of research including the lengthy discussions on this forum. Over the course of 2022 I refused 3 medications and 1 procedure. Each time I had to sign a document. Looking back I feel I should have refused another medication that I tried. I continue my research and choose other non toxic substances. In 2023 I learned that cancer is a metabolic disease which calls for a completely different approach than the conventional standard of care offered to us. It’s unfortunate that we are not offered anything more. There are certified oncolgy naturopathic medical doctors and others who can help us. But you have to find them on your own which isn’t so hard because we have the internet. It is very time consuming. Cancer research has become a very worthwhile part time job for me. Each person has to make her own decisions. I hope this helps a bit.