For those who refused Tamoxifen x-posted Hormone tx

Janeluvsdogs wrote: And Twinmom asked who was ER+ and didn't do Tamox. That would entitle me to answer (her polling) as well as to give further scientific information which was my rationale for the decision.

Well, yes and no. She did ask for responses from those who are highly ER+ and decided against tamoxifen so yes, that would justify a response/opinion from someone else who is highly ER+ and who has refused to take tamoxofen. However, if you look at her bio line, Jane is HER2+ and grade 3 so in consideration of that fact, I think comparing experiences regarding making treatment decisions from those who are not Her2+ are essentially irrelevant - like comparing apples to oranges.  And if you'll take a moment to notice, most of the what you refer to as the "you'll die types chiming in" ARE Her2+. If I were high grade and Her2+ and trying to decide whether or not to take tamoxifen, these are the people I would want to hear from.

Just posting medical information, no matter how reliable that information might be, isn't enough unless you can first interpret it accurately and then also apply that information in a meaningful way to an individual circumstance. Concerns about side effects might be very relevant for some and very irrelevant for others.

Jane, just wondering - what kind of cancer do you have? I did a quick search and perhaps I completely missed it, but I couldn't find where you've posted any information about your cancer other than it was hormone receptor positive and that your surgical treatment was mastectomy,

Good morning all!  I think the purpose of these forum is to discuss - all sides of our treatment.  As most have said - each of our cases is SO DIFFERENT, even if our stats look the same, our oncotype scores can really vary.

You all know a woman who posts quite a bit on here that had a local recurrence while naturally balancing her hormones with DIM.  I am pretty sure she had a grade 1 tumor.  Not very agressive.  DIM is not a guarantee (neither are tamox, femara, etc) With this recurrence she did CMF chemo, which is how I "met" her as I did the same.  With minimal to no side effects for both of us and many who do CMF.

Twinmom - have you been tested for metabolizing tamox?  I can't recall the test name.  I took that and am not a good metabolizer.  CMF put me into menopause, so I take femara.   Happy to report minimal side effects.  My doc does test my estrogen levels every quarter and they are low. Twinmom - did your onc. do a oncotype on your tumor?  Often they won't for a her2+ tumor because the score will be high - high risk of recurrence which means chemo/herceptin/hormone therapy if er/pr+.

I take my femara every morning praising what it can accomplish for me.  Then,  I go run  at least 2 miles.  Running is a new habit of mine.   I have lost 10 pounds (changed my diet to a very clean, low estrogen diet and follow Dr. David Serban-Schreibers Anti-Cancer book).I completely believe in a combined alt. and conventional approach, but that does not DISMISS all that modern medicine can do.  There are side effect that can be posted for everything.  

Risk vs. Reward.  Grade 3, her2+ cancer I would not mess with. (mess is my nice word - I would verbally say the F word).   It has already messed with you.  

Peace sisters

edited to add that I was highly er postitive - 100% per my onc.

Jane, Your statistics about Tamoxifen not helping 96.5% of node negative women are probably substantially accurate, but the way you phrase it is sensational, and like many early studies, includes women who are not ER+, and therefore would not be expected to get any benefit from Tamoxifen.

The statistics that I've seen are that among node negative women, 80% have no local or distant recurrence of breast cancer, even with no further treatment after surgery, .  Understanding that Tamoxifen lowers risk of that recurrence by about 40% to 50%, one would expect a benefit in about 10% of node negative women except that it doesn't have any effect on the 35% to 40% of breast cancers that are not ER+. 

If you know that your invasive cancer was ER+, especially if it was aggressive, you are more likely than someone with a grade 1 DCIS to get benefit from Tamoxifen because you are more likely to be at risk.  You have to balance that risk/benefit ratio for yourself, and make the decision that works for you in your specific circumstances. 

Twinsmom was willing to accept the risks of chemo to get a much lower benefit than she is likely to get from Tamoxifen, especially since Tamoxifen seems able to prevent new breast cancers as well as provide protection against distant recurrence.  No matter what decision she makes about the Tamoxifen in the end, it will be the one that is right for her, for her life today, and long into the future. 

Patmom wtote:

<<Understanding that Tamoxifen lowers risk of that recurrence by about 40% to 50%>>

Actually, Patmom those are the relative risk figures which completely distort the Tamoxifen's benefit or lack of benefit. Ask your oncologist.

Here's how relative risk works. Take 100 women with breast cancer. The ones taking Tamoxifen have (just for example) a 4% survival advantage. The ones NOT taking Tamoxifen have a 2% survival advantage. Since 2 is 50% of 4, that's where the 50% number comes from.

But if you look at the number of women out of 100 who benefit from Tamoxifen is really small. Tho, I understand some women may want to go for that small percentage. Others don't wan't the side effects.

But, Patmom, please don't circulate that 50% relative risk number because it is not accurate for the purposes of decision-making and is considered unethical to use by many in the National Cancer Institute.

Since we're talking stats here, keep in mind that the benefit of tamoxifen increases as original prognosis decreases.  It may be in the single digits for someone who is stage I, but for someone like me the benefit is much more substantial.  Basically if your odds of surviving cancer are great to begin with, you aren't going to get a large benefit from any treatment.  If your prognosis is already in the 90s, there isn't a huge amount of room for improvement.  But when you get to larger, more aggressive tumors with positive nodes, you're looking at a much greater benefit.  Context is everything, which is why humility about our own personal choices is in order. 

I have found in my 16 months on these boards that BY FAR the most controversial and argumentative posts have to do with Tamoxifen.  I am not sure why - maybe because by the time we have to deal with it, we are past the initial shock of dx, and through most of our tx. Or maybe because we have a say in it, as opposed to most of the earlier tx. 

I think that women who take it and those who do not BOTH want to justify their decisions and can come across too strongly and/or become defensive about their choices.  To me, this is a shame.

I am sure there are women who have recurrances, are now stage IV or have lost their battle with this disease who HAVE taken Tamoxifen and who HAVE NOT.  There is no right answer, and NONE of us know what the road not taken would have led us to.

We need to stick together - we are sisters with a common enemy - the cancer, NOT EACH OTHER.
Twinmom, I hope you come to a conclusion/decision that brings peace to your heart and health to your body. If there is every anything I can do for you, feel free to PM me.

AMEN TO THAT!

We all are on our own personal journey. We decided what to do for ourselves but I could not have done it without these boards.

Lisa, it burns me up that people can be so insensitive and not even hear themselves. I've seen your many post and you have made it a full time job to warn other women and help other women compassionately. I never met you but I respect and admire you a lot (from a far)

Just wanted to add my 2 cents and I won't engage in any back and fourth arguments with anyone over this post.  Let's refrain from being disrespectful to one another. We all have our own experiences. When were telling our story it is OUR story. When a woman says "THANK GOD IT WASN'T IN MY NODES!!!!" She says it without thinking of the woman who wasn't so lucky. Let's just be respectful, that's all I'm saying my fellow sisters.

 I  am very high er pr positive . I am her2-.  I did not have to have chemo but I did have radiation.  I agonized for months over whether or not to take Tamoxifen. I tried it, didnt like the way it made me feel and stopped taking it after a week. I wish I didn't spend so much time agonizing over my decision. My surgeon said that my decision to not take it was reasonable and my oncologist said the same thing but she urged me to try it. So I took it for a week:0)..Good luck with whatever you decide. I think it is important to get as much information as you can from your doctors and then do what is comfortable for you. There is only one you!

Twinmom Im not getting into the arguments, but I took tamoxifen for 4 months and hated it. Stopped for surgery and never went back on it. I can live iwthout a boob, but i have dependants and i can't get by without my brain. It does different things to different people in terms of side effects and at least i can say I have tried it and made my decision. Good luck with your choice - be sure what you want, and then go for it!

I was wondering if there were BMX women here re: Tamox. Seeking opinions.

hymil-I also find it curious that Jane never responded and disappeared when asked a simple question whether she is a breast cancer patient.  I just clicked on her name and it seems she is now over on the Arimidex thread bashing that treatment.  From her posts, she seems to be critical of ANY pharmaceutical treatment which makes me wonder.  I know people are not required to post their DX, but have found most BC ladies are certainly open about their DX and TX. As these boards are open to the public, makes me wonder.

Yes, but Jane, you may not understand that we have had waaaaay too many folks come here and preach to us about any number of things, and ultimately, they had NOT had breast cancer.

You will forgive a simple question re: your status as to having or not having had bc.  It's a simple question and if you are providing your "facts" and "evidence", we have sources we can provide as well.  But a simple question to a newbie from we who have been misled on many different subjects, especially those that involve our health and lives, isn't really out of line.  And yes, we all argree with keeping our exact diagnosis if we choose or other very personal info to ourselves. 

Personally, I just never put mine in the  signature.  I prefer a quote that meant the world to me after my bc diagnosis.  My profile does carry it, tho. 

So, if you talk the talk, be prepared to walk the walk.

Hi Whitedove - I had a BMX with recon but not sure if I should post here as I am currenty on Tamoxifen (about 16 months now).  I say "about" because I did have some depression issues after 3 months and took a couple of weeks off Tamoxifen, without telling my Onc, and basically freaked out too much and after meeting with my Onc, who gave me a script for Effexor (which I have never filled) went back on it.  So far so good, few annoying things, but no major side effects to speak of.  Prefer not to be taking a drug but I had an Oncotype score of 6 so didn't do chemo.  I questioned the need for Tamoxifen after having the BMX but the score of 6 is based on a distant recurrence.  I am in a 14km run next Sunday and feel fit and healthy - I still have the urge to blame everything on Tamoxifen, and usually do (HA!!) but being nearly 100% ER & PR I'm pretty grateful that there is an option.  The best I can offer in the way of advice for anyone thinking of taking or not taking Tamoxifen is to give it a try, or two - if it is destroying your quality of life then make a decision - it could also be better for your peace of mind knowing you gave it a try if you do decide to give it a miss.

good luck everyone

big hugs

Helena

Hi Helena,

May I ask if you had DCIS? THanks, w.d.

thanx whitedove