stop the madness

You are very courageous to post something like this- truly. I have been wanting to say something similar but don't want to seem unappreciative of science and available meds. Bur I too, think it's a bit of "madness". May I ask how long you stayed on them?

Why is it madness to take meds that reduce estrogen below detectable levels, when estrogen fed our cancer? Why is it madness to try to cut our risk in half? There are certainly instances where overmedication may happen, or truly intolerable side effects, but for invasive cancer, I was willing to endure a lot of side effects to give myself a chance for living longer.

What was your issue with Raloxifene? Ineffective? I am taking it now after bailing on Prolia due to hair loss. Will get scan this year and update my posts.

Thank you,
Cindy

Madness? Cancer is madness!! I’ve wondered if they need to use chaos theory to determine where the next cancer cell may pop up! Cancer seems like a chaotic monster that may be sneaking around my body.

Looking at the type cancer you have, the prognosis, and risk factors helps make that determination of whether current side effects and damage to some other healthy cells are worth staving off the monster. Each of us decides what is most important to us.

My understanding of some of the current research is that they are looking at the make up of the parenchyma (the cell matrix surrounding glands) and how it feeds or blocks cancer. If cancer can thrive in the cellular makeup of our unique parenchyma then invasive cancer is much more likely to continue to grow and find its way into the blood or lymph system.

If an invasive cancer had moved beyond the ducts/glands, is the parenchyma in my breast supporting further growth? How fast was it replicating? Do I have a lot of estrogen producing cells?

So many factors to consider.

Thank you so much mdr3. I really appreciate your attitude about being as positive as possible re: long term treatment for best outcomes. That really spoke to me! I want to be positive, but it's more than putting up with the rough edges for me. My baseline is 24/7 pain (range 4-10), brain fog, fatigue, inability to sit, stand or walk without increased, intolerable pain (my recliner or bed are the only places i can get comfortable but i sure can't stay there all day), leg weakness, neurogenic bladder and bowel and adrenal Insufficiency, so my body doesn't make cortisol. I have Ehlers-Danlos syndrome, a collagen disorder, which causes widespread pain among other serious poor quality of life issues. I've been living with intractable back pain for the past 10 years from chronic spinal nerve meningitis. Coming off my bioidentical hormones will be nearly impossible, unless I want to be bedbound. Oops.. going to rephrase.. coming off hormones will probably be difficult but I'm open to exploring it. In my higher place, I will listen to my doc, do my own research and learn so much from all of you..for any ideas about how to lessen the impact of living w/o hormones, and negotiate to come up with the best plan possible. I just had lumpectomy and sentinal node removal for 2 small(1 cm) IDC tumors. It had been only 8 months since my last normal mammo. Estrogen and progesterone positive, HER2 -. Awaiting result of node pathology. Planning modified rad TX.. I'm at risk for burning complications from that due to Ehlers-Danlos. Your words help me focus on making the best of all of this. I've re-started meditation and am seriously monitoring my thoughts. Your reminder about a second opinion was also helpful. Thank you again! I wish you all the best on your journey!!

Hi windyshores. I hear you. It really should be a no-brainer, however; I would like to respectfully ask you to read what I just posted as it may answer your questions. Unfortunately, for many of us, it is not so straightforward. There are worse things than dying sometimes. Harsh but true. Thank you!
Kristie

Hi catreen
I've been on bioidenticals for about 10 years, since menopause started. I'm 65 now. I understand where you're coming from when you say you don't want to be unappreciative! These medications/ therapies save lives and have their place, front and center, in winning the battle to live. I think it's mostly an educated balance that's so individual to the person with cancer. I hope you are doing well and thank you for asking!

Hi catreen. I can't figure out who your question is to. Sorry, just getting the hang of this.
Kristie

Hi triciaot
Thank you for your excellent answers about how best to make decisions. I love the Chaotic Monster analogy! Interesting about the breast tissue parenchyma.. makes so much sense. I'm going to ask my doc about your questions.. good ones!
Kristie

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.