Aromatase Inhibitor and just walking away.

scaredashell07 When I was on Femara, I had pain in the lower back and down one leg. It felt like my leg was on fire. When I couldn't stand it any longer I stopped the Femara and it went away almost immediately.

OG56 - just wanted to clarify, the test is BCI (Breast Cancer Index), not BMI.

BMI is not a test, it is a calculator for Body Mass Index - which measures body fat and is not connected to breast cancer. BCI is a two-pronged assay test done on your original tumor material that is done at the 5 year point on anti-hormonal therapy to determine two things - with a prognostic result and a predictive result - whether one is high or low risk for recurrence, and whether or not you would receive benefit remaining on these drugs beyond 5 years.

my nutrtionist told me that these hormone therapies are basically useless. They don't actually do much. Best thing to do is get ovaties out if that's a viable option and remove the whole Breast ( mastectomy )If those two things are done your chanceof recurrence and metastatic rates are so low. I know there is more involved like grace and lymphnode status so why does he simplify the statistics?? Have to ask him more. This was my first visit.

So I wonder what are the statistics for those that don't use these drugs? My oncologist said it basically increases your survival by 10% on top of whatever else you did.what did you hear about stats for prognosis

HaHa must have had weight on my mind!!

If only it were clear what each of us should be doing. Like I've said before, I feel bad for the stage 0/1 folks who isn't as clear, or as clear as can be, as to the path they should take. That's the only thing I "like" about my path is it's do it or time is very highly to be ticking harder than it naturally is.

Cdore, welcome to Breastcancer.org! We're so sorry for what brings you here, but we're so glad you've joined us. We know the beginning is really hard, but it will get better. Hope you'll find our Community to be a very helpful, informative and supportive place.

Thinking of you!

The Mods

Bethy, you can try arimidex and see how it works for you, not everyone gets serious side effects - in fact, the majority don't. I have been on it for 3.5 years and will most likely stay on it until it fails me or I stop tolerating it.

I was told talking the med would only give me a7% more chance of non recurrence. I have an 85% without and 93% with. I would like to find others ways through diet and exercise and supplements but not sure where to find credible information.

Hi Cdore,

I hear you. Did you have surgery yet? Do you have a treatment plan? This is happening to me too and it's frustrating! If you want to, we can pm about things here too.

Take care and try not to stress (yeah...right...easier said than done I know).

HG

Bethy and dtad: I'm choosing not to take anti-hormone therapy - mostly because it only lowers the risk from 12 to 6 percent or 8 to 4 percent depending if I calculate from the higher or lower range risk number I was given. My main reason is my anti-depressants aren't compatible with the anti-hormone therapy and I've literally tried all the ones that are compatible. It was really difficult to find a combination of meds that relieve my depression and I'm not about to mess with it. I'm exercising vigorously three hours a week. My MO says 150 minutes of exercise reduces recurrence risk by 40 percent. (The numbers above had the exercise factored in.) I am also losing weight which I think would help but he said it wouldn't make much difference risk-wise. I'm still dedicated to doing it. I've lost 10 pounds since finishing rads on June 28. Of course I gained 16 pounds between diagnosis and end of rads. Comfort eating.... But at least I'm headed in the right direction.

Like you I wish there was reliable info on ways to reduce risk. I also wish there was a study we could sign up for so data could be collected and comparisons made to others who are taking anti-hormone therapy.

I registered for the Sept. 22-23 Northwest Metastatic Breast Cancer Conference: Living Well. Living Longer, in Seattle. I'm just going on Friday since it is open to people that don't have metastatic cancer:

Friday, September 22
We'll focus on "breast cancer rehab" with sessions on integrative care, inflammation and disease and nutrition as medicine. The goal of these sessions is to help you manage better during treatment, heal afterward and in some cases lower recurrence/progression risk. Friday will be open to breast cancer patients of any stage and subtype and their caregivers.

http://komenpugetsound.org/nwmbcc/ breast cancer

You can also register to watch the conference online.

Scaredashell, how's your hip? Have you seen an orthopedist (regular or sports-medicine)? Your symptoms sound exactly like mine in early 2015 (before breast cancer). The sports med ortho did an ultrasound and found a big honkin' bursa over the precise spot on my hip from which the pain was radiating. He did a cortisone shot, which helped a bit. After I got home from a trip to Spain (where I was cane-dependent the whole time), I had an MRI which revealed I had a torn gluteus medius muscle. Did the math in my head and realized the pain started the day after I had shoveled snow and then walked 1/2 mi. ea. way through 3' snowdrifts to & from a Super Bowl party. It led not just to the muscle tear and bursitis, but also iliotibial (IT) band syndrome. Eventually, P.T., Flector and lidocaine patches, plus the shot, healed my hip (it took about a month).

And getting medical oncology advice from a nutritionist (BTW, anyone can call themselves a nutritionist regardless of credentials) is like getting nutrition advice from your hairdresser or fashion tips from your oncologist. (I'm not giving orthopedic advice, but rather urging that you seek it from an orthopedist).

Finally, any time I see a book, website, or article with the words “the Truth" in it, I hear the sound of rubber ducks in the distance. And it always turns out to be quackery. (Christofferson—not a doctor, biologist or nurse--is a disciple of Joseph Mercola, who is that rare quack who also is an MD). There is a thread on the Alternative forums about treating estrogen+ bc naturally. The Alternative forums, according to the Moderators, are not intended to be an endorsement of alternative or natural remedies, but rather a safe and non-judgmental harbor for those who choose to spurn conventional treatment. This forum is not, and calling out quackery, fakery, and woo here is fair game.

Thank you so mucgv

Estrogens can be produced by fat tissue, the liver, the adrenal glands and the ovaries. The ovaries are the primary source of estrogens in premenopausal women, except for women who are pregnant. Estrogen production from the ovaries begins with the theca interna cells, which convert cholesterol into a hormone called androstenedione. This hormone is then exported to other cells within the ovaries, called the granulosa cells. These cells convert the adrostenedione into estradiol. During pregnancy, estrogen production is taken over by the placenta. After menopause, the ovaries stop producing estrogens and it is instead made by the adrenal glands, the liver and the fatty tissue within the breasts.

http://www.livestrong.com/article/23846-estrogen-p...

The related hormones that make up the family known as estrogen include estrone, estradiol, and estriol.

Estrone (E1)

Estrone is considered a weaker form of estrogen and is the major estrogenic form found in naturally menopausal women who are not taking hormone replacement therapy (HRT). It is the only estrogen that is present in any amount in women after menopause.

Estrone is the least abundant of the three hormones.

Estrone is made in small amounts in most tissues of the body, notably fat and muscle.

Estradiol (E2)

Estradiol is the most potent form of estrogenic steroids produced by ovaries and exerts the fullest range of estrogenic effects. When estradiol reaches the tissues, it connects with estrogen receptors to trigger specific activities in those tissues and cells.

In addition to being produced by ovaries, estradiol can also be produced by conversion from a number of precursors in the adrenal glands and the placenta.

Estradiol is thought to contribute to many gynecological problems such as endometriosis, fibroids, and even female cancers, particularly endometrial cancer.

Estriol (E3)

Estriol is a metabolic waste product of estradiol metabolism that has some effects on a limited number of estrogen receptors.

Estriol is only produced in significant quantities during pregnancy.

Estriol is made by the placenta from 16-hydroxydehydroepiandrosterone sulfate (16-OH DHEAS)4, which is an androgen steroid made in the fetal liver and adrenal glands and is 8 percent as potent as estradiol and 14 percent as potent as estrone.

http://www.medicalnewstoday.com/articles/277177.ph...

I met with my MO today and told him that the side effects were so bad on Als that I could not continue. He was not happy but did not do any guilt tripping. He encouraged me to consider trying again in 9 months. Unlike my family Dr, the surgeon, and the nutritionist, the MO he did not feel that weight loss and exercise offers that much benefit. His only guilt trip was he said that most of his patients stuck it out for at least 2-3 years. AS I was check out I has a fun conversation with the staff at the check out. They were curious why 9 months and I told them that I felt I had to stop Als. They asked me if I was just walking away and I told them about my change in nutrition and exercise. They applauded me. They said they see so many women suffering on the drugs. They said that many women suffer for just a 2-6% benefit when if they took charge of their health they could achieve a similar benefit and be healthier.