New and very hesitant to start hormone therapy

Sherbear

I am facing a similar situation - that is whether I want to take hormone to cut my recurrence.  My case is different than yours, as you are 90% positive for ER, and 40% for PR.  I have triple negative cancer, my PR is only 5% positive.  And my onc. wants to put me on hormone therapy.

 I may be wrong, but maybe you need to ask your Onc. for a CD or something to watch how Tamoxifen works.  It is not the same as Hormone Replacement Therapy, which causes cancer in some women.  Tamoxifen is supposed to help you avoid a recurrence.  It binds to the extra estrogens in your body, so that those extra estrogens which your body is making can no longer attack your breast.  The extra floating estrogens have caused your cancer, and Tamoxifen is supposed to stop that process.

Imagine, I being only 5% positive, am considering Aridimex, which has a lot of side effects, same as Tamoxifen.  One of the side effects is bone loss, so they want to give me Zometa to counter that.  Some studies have shown that when a woman is given aridimex/zometa,  the chance of recurrence goes down by 35%.  The latest study has shown that it is not true.  My Onc. thinks I am a guinea pig and wants me to try this.  I am so scared of Zometa as it can potentially cause severe kidney damage and an ONJ, which is a condition of the jaw and they don't have any answers how to treat that.

I am struggling like you are, trying to figure out what the heck to do, take it or not.  I am venting too.  Good Luck.

I don't think any of us wants to take drugs.  But we didn't want cancer either, and I am grateful the drugs are an option.  Keep in mind that DIM and other supplements are also drugs, though perhaps with less study and oversight.  I believe that lifestyle changes are important but only help prevent recurrences or cancer in the first place around the margins.  You can't beat cancer on diet and exercise alone.  I say this as someone who has been a vegetarian for 27 years and is an avid runner.  I have no family history so with my lifestyle I should never have gotten cancer.  Thats why I would never trust such things alone.

 I suggest you try the tamoxifen and if its really awful you can decide to go off of it.  Most women do just fine on it.  I took the full five years without a problem and am now on zoladex and arimidex (and i feel great).  You can overstate the extent to which tamoxifen is a carcinogen.  It very rarely leads to cancer.  It does have some positive benefits as well -- lowering cholesterol, strengthening bones.  Not that you should take it for those reason, just saying. 

funny- I don't like the idea of tamox/or arimdex either. I guess its the 5 year haul. However, I know I am fortunate to have an option to fight re-occurrence.  I will say, my understanding is that 50% benefit as I understand it is on your reoccurrence rate. So if your reoccurrence rate is 20%, it lowers it to 10%. if you reoccurrence rate after surgery, chemo and rads is 12%, your rate on tamox is 6%.  I friend of mine, only had a 3% benefit from tamox and had terrible side effects. Her onco blessed her coming off it. 

Mathteacher - your facts are probably more accurate given your penchant for math!! I am only recalling a verbal discussion I had. I could be recalling full details incorrectly.

Sherbear - I'd confirm your reoccurrence rate after surgery, chemo and rads.  your 50% bene % from tamox  is 50% off that final number..

Sherbear, I too was very ambivalent about taking tamoxifen and the rebel in me said "No way", but I decided to try it.  Initially I told myself, I'll do it for half a year, that has to have some benefit and then I'll quit if I don't like the effects.  7 months into it, I took myself off of it for about 6 weeks due to horrendous hot flashes and issues with my libido.  The libido improved slightly, the hot flashes improved, and I started to think about what if I get a recurrence?  Then I might regret not taking it, so I started it back up again.  I told myself I'll do another 6 months and then reevaluate.  Well, I've been on it 2yrs and 2mos now, and am currently telling myself that at 2.5 years I will quit taking it for good.  At that point, I will probably tell myself, why not make it an even 3 yrs and then be done with it.  The 5 years to me is very overwhelming, so this is my way of getting through it, little by little.  Don't know if I will do a full 5 years,  I would feel just fine stopping at 3 and/or taking another break from it soon because of my Stage 1 status.   I barely notice any side effects now, hot flashes aren't too bad, in summer they get worse or when I'm out shopping carrying too many things and wearing too many clothes.  I still get problems with my libido on and off, but am using testosterone gel, which helps with that problem.

I get my uterus and ovaries monitored twice a year with transvaginal sono and so far have had no problems.  If any problems seemed to be developing in those areas, I would not hesitate to immediately stop the tamoxifen, as I do not want to end up with a hysterectomy and/or oophorectomy.

All my lab tests since I've been on tamoxifen have showed fantastic numbers on the cholesterol, LDL, HDL, and triglycerides panel.  Everything extremely into the good range.  Don't know for sure if this is from the tamoxifen, because I've also made exercise a consistent part of my life now and have increased my fruits, veggies, and good carbs and fats.

I'm not too excited about being on a drug for 5 years either. I did not have any infected nodes or LVI but there are many other factors that can put you at risk for mets. In my case my tumor is larger, grade 3, very high proliferation rate and HER2+. My ER is only 30% and PR 5%.

At the very least I want to try it. I can always stop. Just remember there are many natural things you can do to keep your estrogen down as well.

BTW my onc had initially discussed Zometa for me when I was diagnosed with slight osteopenia. After the study came out at the St Antonio conference she now says no and I should let my regular internist watch my bone issue. She did have me start taking calcium supplements. I was already on D because of D deficiency.  My internest says no need at this time to worry about the osteopenia. I will be retested in a year.

p.s. I also had an oncologist who was zometa happy.  I was very reluctant and now, due to new findings, very glad I did not go there.  Now, there is a scarey drug for you!

Tamoxifen has 30+ years of good research and findings behind it.  Talk to your GP, your onc, your BS, others on here.  All knowlege is power.

My onc is putting me on 1mg of anastrozole once a day. Anastrozole is the generic form of Amrimidex so assume the amounts would be the same. Granted I'm only 30% ER & 5% PR. I wonder how they decide the dosage?

sherbear-  Like you, the hormone therapy is the hardest part of my decision.  Did you have the Oncotype DX test?  That can give some good information on your chances of recurrence.  I have decided to decline ARimidex.  Having said that, in discussion with my Onc, I can start it at anytime if I change my mind.  As I understand, the lower your recurrence risk, the smaller your benefit from any hormone therapy.  If your recurrence risk is 10% and taking hormone therapy reduces your risk by 50%, then not taking hormone therapy would mean you would increase your risk to 20%.  So you see that it is all very, very personal depending on your ver unique situation.  What I insisted was that my Onc speak to me in overall survival rates, not recurrence rates.  From what I can gather, there is no survival benefit.  This is a very hot topic on these boards and you will get lots of hot opinions.  There are two threads I would suggest reading the old post in as there is lots of good information.  The "natural girls" thread in the alternative forum and also  one called "declining hormone therapy" in the hormone forum.  Best of luck with your difficult decision.  I know it is torture.

I am stage 4 (massive recurrence to my liver, lungs and spine a little over a year ago) and am deeply regretting my decision not to take tamoxifen.  I hope I can influence others not to make the same mistake.  There are no guarantees of course, but taking tamoxifen can reduce your risk of recurrence.  Believe me, the side effects and inconvenience of taking tamoxifen are nothing compared to living with stage 4. Browse the stage 4 forum and see how many of our sisters we've lost in recent weeks and the hardships that are part of living with advanced breast cancer.

My thoughts/experience to add:

I was very afraid of Tamox but have found it not bad at all (have been on it for one year). But I know some have horrible side effects and to me that would be a huge part of the equation.

Your onc would drive me CRAZY! Everyone is different but for me to feel comfortable I have to know a lot about the proposed treatment and go to someone who is willing to let me be part of the decision making. For example, I had a hysterectomy 5 years ago so most onc would go with a  AI, but I didn't want to do that becuase I also have osteopenia. 

There are various sites in the internet that allow you to plug in your info and look at your owns stats with and without various treaments. I used adjuvant online and found it very VERY helpful.

My onc has never said ONE WORD about diet and exercise, and I think this reflects a narrow minded view of preventing recurrence. I think they should put it all there for us side by side. There is a lot of evidence on the benefit of exercise for example, so why do they not all  include that when discussing stats on recurrence?

I just want to chime in on the diet and exercise too.  My ND said the best thing I could do to combat side effects from Tamoxifen (and help prevent reoccurence) was to eat healthy (read the "Anti-Cancer" book!), consistent regular exercise, plenty of rest, and threw in a few supplement recommendations in (Vit D, Melatonin, Iodoral, etc).  Although diet and exercise is not a "guarantee", neither is Tamoxifen, chemotherapy, etc.  I (with the blessing of my Medical Oncologist) decided to bet my money on, BMX, Tamoxifen (due to my high ER status) and diet and exercise.  I have to tell you that I have never felt better!  I am 7 weeks out from the BMX and started back in my Step Class and 4 mile walks weeks ago.  I'm starting the Tamoxifen at the end of this month (wanted to settle in to my "new normal" so I could ascertain what was truly a "side effect" or just an adjustment to recovery/going back to work full time).  So we'll see if I'm still singing this happy tune come Feb! 

P.S.  My Naturopath Oncologist (from Cancer Centers of America) STRONGLY advocated to NOT use any DIM or IC3 with Tamoxifen...said it will reduce the effects of Tamoxifen?!!! 

Molly.. I will try and contact him and find out.  I specifically asked him that question because I have been taking DIM since shortly after my diagnosis, and plan on taking it up until I start the Tamoxifen.  He was pretty adamant about me stopping it? 

Loverly face I agree. Granted I do think there are natural things that can help in conjunction with traditional western medicine methods…but it's not an either this or that type of thing. You do need to check with  your doctors reagarding these alternative methods to be sure they are not in conflict with your current treatment.