Surgery+Radiation, what next do not want Arimidex?

Hi and welcome! I'm not exactly in your situation in that I have DCIS and am not going to do radiation, but I am also ER+. You're doing great to be losing excess weight -- that will go a LONG way toward balancing your hormones. There's a thead called "Balancing hormones naturally" or something similar that you should take a look at. I'm taking care of my estrogen dominance by:

 - taking iodine (Iodoral, 50mg/day for the next 10 months)

 - eating cruciferous veggies as much as possible (as you are)

 - sleeping in COMPLETE darkness

 - exercising

Also, have you had your vitamin D levels tested? You may want to add a good vitamin D3 supplement to what you're taking... most Americans are deficient and that's a good anti-cancer nutrient.

I refused chemo, too.  I did decide to try Arimidex before ruling it out.  Luckily, I have had no obvious side effects.  I would recommend that you consider bio-identical hormones if you are refusing arimidex to balance the estrogen.  You can read more in the book, "What Your Doctor May Not Tell You About Breast Cancer". 

Roseann

hi i was told by my surgeon to take arimadex as i saw the side affects listed on timoxifin i went and got the script today but have no peace about taking it after i saw all the side affects of arimadex as well. My bc feeds off estrogen and and as it was small 8cm and slow growing so i asked my surgeon if it comes back i will just go into hospital  again and have it removed she and specalist nurse said it could come back as stage 3 agressive this time. I am shocked that these high profile specalists and surgeons dont tell us all the side affects but only list some mild ones such as muscle cramps and some nausea. i saw today on the Arimadex script info sheet that kidney and liver damage is listed in small print but not all the others. Also this is a anabolic steroid. i do feel pressured by my specalist nurse and surgeon who have told me not to be Pro Active searching out info on the web. I just feel that the side affects are so many and some so bad that i dont want to be a walking time bomb for other more serious dieases down the track. first timer here ......... can i ask overcomer3 if her name is significant to any christian beliefs and no offence meant cheers

Are you kidding? You are smart to pass up chemo. I survived chemo but it made me want to die. I tried tamoxifen but got seriously depressed. After menopause was confirmed (caused by the chemo) my onc tried to get me to go on Arimidex but the SEs are completely turning me off. I recommend a naturopath. I started seeing one a few months ago and I am now more optimistic than I have ever been. Good luck and don't let the Cancer Industry influence you to do things you are not comfortable with. Go with your gut.

Honestly, with three positive nodes you are playing with fire not taking a systemic treatment.  I think it is unwise to pass up chemo but really unwise not to take any hormonal medication.  Its one thing if you have DCIS but you are stage IIb, very close to stage III, which is advanced.  It pains me to see you pass up life saving treatments.

Did you read the article?  The study found that there is no difference in long term survival (though there is in disease free survival) of an AI OVER tamoxifen.  So that it is useful as an upfront treatment if someone cannot tolerate tamoxifen but otherwise there's no reason not to start with tamoxifen.  AIs are also useful after a woman has completed her five years on tamoxifen, which is how I intend to take it.

 OP is taking nothing.  Her positive nodes are a very strong indicator that there are cancer cells circulating in her bloodstream and she is doing nothing -- neither chemo, nor a hormonal -- to stop them. 

Hi Janeluvsdogs,

Would you mind sharing the specific quote that says patients aren't surviving longer on Arimidex than those patients taking nothing at all?  I read the article and I didn't get that impression.  

Hi thenewme, rereading the full text is usually the best strategy when you don't get the thrust of an article the authors put so much time and evidence into. You may not understand the difference between disease free survival and overall (or absolute survival). We patients want overall survival.

Hi Janeluvsdogs, thanks, but I very well understand the difference between DFS and OS.  I have read the article several times, and I understand it exactly as Member_of_the_Club has posted. 

It says that AIs have not been shown to improve survival COMPARED TO TAMOXIFEN.  That's VERY different from saying AIs have not been shown to improve survival at all.  

Bottom line is both Arimidex and Tamoxifen have quantifiable survival benefits over doing nothing at all. 

Again, maybe you could share the specific quote that shows otherwise...?

Where is your evidence that Arimidex extends overall survival? Please share with the class.

Tamoxifen has been studied for a fairly long time so they have absolute/overall survival statistics on it (death from all causes) for people with nodes and without nodal involvement. Tamoxifen benefits the node people more than the no node people. From the Tamoxifen manufacturer's info http://www.druginfonet.com/tamoxfen.htm  this is what it says about patients with nodal involvement: "Ten-year survival was 50.4% for tamoxifen vs. 42.2% for control"  So that is an 8.2% survival advantage.

If there is no nodal involvement the overall survival advantage is about 3.5%.

But Arimidex is still being studied for survival. It is still experimental. They have this theory that Arimidex will improve OS (overall survival) because it reduces recurrence to some degree. But, as an oncologist at my local university said, "it is a mistake to think preventing a few recurrences translates into living longer."

In the study women were living without cancer but dying more often from other things.  There was no pattern to the deaths,  nothing that would count as a new side effect.

So would we rather die from one of the normal reasons that people die in later life but possibly earlier than we might have?  Or have a greater risk of getting stage IV BC and have to live with the fear and pain of that?

According to Wikipedia, this overview  of Tamoxifan from 1998 seems to be the one that is used for survival rates when comparing AI's.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2897%2911423-4/abstract

"Tamoxifen for early breast cancer: an overview of the randomised trials
The Lancet, Volume 351, Issue 9114, Pages 1451 - 1467, 16 May 1998"

This is an overview of many studies with 30,000 mostly ER+ women used for their data.  They concluded that:

 "In the trials of about 5 years of adjuvant tamoxifen the absolute improvements in 10-year survival were 10·9% (SD 2·5) for node-positive (61·4% vs 50·5% survival, 2p<0·00001) and 5·6% (SD 1·3) for node-negative (78·9% vs 73·3% survival, 2p<0·00001). These benefits appeared to be largely irrespective of age, menopausal status, daily tamoxifen dose (which was generally 20 mg), and of whether chemotherapy had been given to both groups."

So with positive lymph nodes your odds would improve by around 11% or higher with an AI, but that's no guarantee, so for anyone to say or imply that the cancer will come back is really not true. Everything is just probabilities and averages.

Unfortunately improving our immune system is not much help against mets as the cancer has set up a good disguise by that stage so that our immune system doesn't recognise it.

My personal preference has been to at least try the Arimidex for a while to see if it's doable. Certainly I know I'd live with regret if I got mets and hadn't at least given the Arimidex a go. The main SE's are not really life threatening, but mets obviously are, and much more painful and emotionally devastating than any arthritis or hot sweats.  If my arthritis or other side effects get too bad I'll try taking half the Arimidex with natural AIs.

Good luck Overcomer!  Exercise is supposed to help as well - just add a nice walk every day.