Hi, I'm not stage 3, but I couldn't take Tamoxifen either.  I had ILC and it was large, but luckily I had no positive nodes - I don't know if that influenced my decision or not.  I also refused AI's, because I didn't want shots of Lupren to put me into fake menopause. 

I finally decided on the supplement DIM, with help from information from the nice ladies in the Alternative Treatment forum.  It supposedly blocks the bad estrogen.

It's a tough decision to make, and one you need to think about.  Talk to your oncologist.  My MO had me call the alternative medicine department at the hospital - I wasn't really satisfied with them - they went by her recommendations, but finally told me to research DIM and I3C, so I did .  But, I can't stress enough how important it is to make any decision in conjunction with your treatment team.

Good luck to you.

Hi there - I wasn't a Stage 3, so perhaps you won't care about my reply but I also chose not to do Tamoxifen.  My oncologist really pressed me hard, but after I did all the research and spoke to other women in my support group who'd been on it (and hated how they felt with it) I really felt strongly that I didn't want this drug in my body.  Like "itsjustme10" above, I also take DIM.  I have written a blog page about it - check it out here: http://marnieclark.com/breast-health/what-is-dim/ .  I hope that it helps you make a decision.  I'm an 8-year breast cancer survivor with NO recurrences so I think it must be doing something good for me.  As with anything alternative, however, I really feel strongly it's not just any ONE thing that you do, rather it's a combination of many things.  Good luck with your decision - sending lots of healing your way today!

I think it is better that er pos women take tamox then have chemo!!! It really is the better defense for erpos women. If you are post meno you can take arimidex............. You are stage 3 with nodes, please as a sister try to handle the se, it could really save your life.. By the way,  in no way am I telling any one not to do Chemo that is a no brainer, you Must!!!! Do everything you can!!!!  Excersize and eat right, that is really important too!!!!

Blessings

faithfulheart - another option is Femara/letrozole for post meno women. That was my meaning about 'other options'.



This section is for those who are Stage III - not a particular type - at least as I read it. The appropriate TX plan for IDC (you) is not the same for IBC (me). You may think chemo was not 'right' for you/some and that may be true for some Stage III, BUT is not true for all. Without chemo, I would not still be here and still Stage III. Am I different than you - you betcha!

I did not decline it, I took it for about 8 months before the side effects got the best of me. My oncologist said that they are not really sure about the short term benefits, but even 8 months may have made a difference. I have a lot of mixed feelings about Tamoxifen. There is always lot of pros and cons about all the treaments. I am glad I gave it a try, sorry that I could not continue taking it, and I have been trying to take my oncologists advice and not beat myself up about it too much. He said there are lots of women that simply cannot take it, so I guess I was not alone. In my case I had some serious mental health side effects that affected the quality of my life to the point that I decided for me to just stop and see how I felt for awhile. I chose not to continue taking it. Sometimes that decision really scares me, other times I feel confident that it was the best decision for me. I do not think anyone can say for sure what the best decision is for you. I just wanted to say that I have been where you are now, and I feel for you, it is a hard decision to make

I had horriable leg cramps and emotional se.  I also had my ovaries out too!!!  My cramps went away it took about 6 months and I found my emotions are stable now. Kicks I was not telling people not to do chemo, I would not be here with out it either,  I think you misunderstood me. So sorry if I upset you.......

I am just saying, that my se did eventually go away, its not easy but,they did stop/////

praying it will all work out!!!!!!

I took Tamoxifen for two years before my onc switched me to Arimidex. My worst Tamoxifen side effects were leg cramps and leg pain. I took ibuprofen for the pain and potassium supplements for the cramps. Both helped a lot and allowed me to continue hiking, working out, walking, and dancing.

I imagine that the side effects from treatment for stage IV breast cancer would be far, far more severe.

I watched my 44-year-old mother die a gruesome, agonizing death from breast cancer. Tamoxifen was not available in the 1960s. Me, I thanked my lucky stars every day when I swallowed that little white pill and I continue to thank them for Arimidex.

I would urge you to consider. Given your age, your body is still pumping out A LOT of estrogen that can feed any residual cancer.  And as my MO says, the fact that BC moved to your nodes means your BC knows how to move. 

My MO continues to say that to ease side effects, keep exercising. I really think that has worked for me.  I know a lot of women have experienced decreased QOL, but it has also extended MANY lives by MANY years.

I started to take it about 6 weeks ago and I feel fine. I asked my friend a nurse about people that don't take it well and she

said there is another drug but it's wiser to ask your oncologist about it. I am just concerned about osteoporosis in the future and if there are any side effects that come later on.

I'm not on Tamoxifen but take my Aromasin religiously everyday and I'm thankful also that have it to take, look at how far we've come. I was 34 at dx and have many years of this BC life to live.  I'm sure there is damage being done from the lack of ER & the Aromasin but my feeling is I have to make it that far to find out.  I'll deal with those SE when the time comes by then they'll have more drugs or even a cure, hopefully.  All we're doing is buying time with these little pills but they give me some peace of mind that I'm doing something.  

ok...you ladies are all so knowledgable...i have to ask this question.  was diagnosed last march with ilc...3 tumors in breast - 10/12 positive nodes.  when my sister asked my dr. what stage i was - i interrupted and didn't want to know.  all my dr. said was - well you are not stage 4....i still have not asked that question of my dr.'s...but i am assuming i am stage 3c?  initially i was filled with fear...but now i am wondering....anyone have a guess?  not sure what grade the mass was...after research - know i am a 3...but not sure a,b,c....way to put your head in the sand huh?  ok - another reason i didn't want to hear it at the time...my mom was in the room with me..85 and very upset...didn't want her hear it....

Shelly,  yes DIM is a natural supplement.  Some brands have soy, some don't.  You have to read carefully.  I'm honestly not sure whether the brand I chose does or not, but the integrative medicine department didn't seem to think it was a big worry.

They all seemed to think that a healthy diet and weight control is as important, if not more so, than anything.  But, like I said, my nodes were negative, so I don't want to give anyone advice that could possibly hurt them.  Please check with your oncologist if you have any concerns before taking it.

the DIM does come in no soy, but i also don't know where i put it away this morning.. it has some elements that are in brocolli.. totally natural fights estrogen , and cause cancer cell death, as i understand it. i used that, fish oil, and iodinal??sp   after i failed all the anti estrogens..(side effect of having ms)..3jays

ok....well - it didn't go into my chest muscles - so i think i may be 3a...i guess i should break down and call.......and keeping with this post - i too did not want to do tamox - i decided to try for a period of time - i have found that the se's were manageable - i know we're all different - but maybe a trial run will help with your decision....little bit of joint pain and leg cramps...guess i feel like i went thru the treatment plan...least i could do is give it a try!

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