Does anyone say no to Tamoxifen

Hi , my onco score was also 13 and I was told that gave me a 7% recurrence chance . No one mentioned WITH tamoxifen . Anyway I took tamoxifen for 3 1/2 months and just stopped yesterday .I had a sono that showed uterine wall thickening , cysts on both ovaries and my fibroids grew . I knew something was wrong  because my lower stomach was getting bigger and was hard as a rock .. I will have another sono in 6 weeks but I am definately done with tamoxifen . I am going to try DIM . It is supposed to help with the fibroids as well as breast cancer from what I've read . Thank you to the women here that mentioned it because I had never heard of it ! 

Decisions, Decisions, Decisions....We are all different and these drugs don't appear to be too easy on the body. I started Femara (aromatose inhibitor) for woman that have gone through menopause. When I stopped taking birth control over 3 years ago I had a couple of periods after that. Then I went through a horrific experience where I feared for my life and was looking over my shoulder and the periods stopped. I was 51. They never came back. I was never sure of the cause of the periods stopping.  (The stress of the situation at the time or just menopause) I started taking Femara a little over a week ago and in 7 days I started my period. The on call doctor said stop taking it because if you are bleeding then it won't protect you from cancer returning and call regular onc to discuss Tamoxifen on Monday. Well of course he is on vacation this week and I have an appointment with another onc to discuss taking Tamoxifen instead . I know my regular onc said that my prognosis was good without further treatment and I will be discussing that with this onc. I need to know what the percentage is we are tryiing to increase. If it is only 2 to 5% then I don't think I want to risk taking these drugs that messes so much with Mother Nature. (and I am not just talking about menstruation)  I think someday as research evolves the doctors will be saying "we don't treat BC that way anymore" I could be wrong but my gut is saying "don't take it, you will be fine". I think for some woman just like chemo that Tamoxifen can be a benefit, but for me, I don't think so at this time. The doctors agree chemo would not reduce my cancer from returning.  When I was two months old the standard of care for an enlarged thymus was radiation to the thymus in the chest area. These were called "small doses" of radiation at the time. Today those small doses are called large doses. Today doctors no longer treat enlarged thymuses with radiation.

 Geez --- one of the best things about getting old is not having periods, but here I sit feeling crummy on my period.  We will see if he can give me any good reasons to try the Tamoxifen. Otherwise, I just may pass it up. If I already had one of the very "rare" SE from Femara according to the Femara website, then for me I thnk the risks from Tamoxifen may be heavier in my case than the risk of recurring BC.

Take care, we all are different and it may work wonders for most, but not sure it is right for me.

Suzanne 

Speaking of hair loss (reading the post above), I have been losing mega amount of hair daily since May, and could not find the reasons.  My doc checked my thyroid, and it turned out perfect (in fact, she told me it was better than average).  I asked if it was prolonged stress, but looking at the zip lock bag of hair I had brought to show her just how much is falling out, she didn't think it was stress-related altogether. 

I just spoke to someone who enlightened me that surgery/anesthesia can commonly cause hair loss, especially in women.  I googled around and read many posts by ladies who had the same experience several months post-surgery (of various kinds).  I had my double mx back in Februay 09, and my hair loss started in May (2 months later).  Then I just had my exchange surgery last month in July, and in August, my hair loss accelerated. I'm told it will grow back,  but hair loss can continue for months and months post-surgery.  As for Tamox, I have not taken any but am taking DIM.  My uterus proved to be too proned to fibroids, so just as well.

How long is a long time survivor?.I have really been torn about this tamoxifen ordeal. 

I wish you guys would look at the research before making these decisions. There is a lot of it out there. Unfortunately, doctors are forced to follow standard protocols and cannot deviate, even if they want too. I was surprised that my doctor did not argue with me when I told her I would not take any drugs, even though I had spent months arguing with her nurses who were trying to push it on me. I just had this overwhelming feeling that it was too dangerous. Why trade one disease for another when there are natural alternatives? We have threads that tell you all about I3C/DIM/Miomin, which do the same thing as these drugs without the side effects. You will find lots of links to studies on those threads so I am not going to repost it all here. You will also find a lot of information about balancing hormones instead of blocking them on the Progesterone and Bioidentical Hormone threads. AND you should all check out the Iodine and thyroid connection to BC thread. Even if you do not think you have a thyroid problem, you might. And there are new studies that show that low iodine levels is a major cause of bc and that supplementing iodine may be just the protection we have been looking for. I encourage everyone to start educating yourself before making these decisions. I cannot believe how much energy I have now since getting my hormones in balance and supplementing with iodine. And I have no fear that I will get a recurrance just because I am not taking a drug. I know that my cells are healthier than before because I have made so many healthy lifestyle changes. A good place to start is breastcancerchoices. org where you will find information on both. Do not just take anyone's word for it. Do the research and make an educate decision. Oh and here is a recent article that implies that tamox may actually cause cancer:

http://www.naturalnews.com/026931_cancer_Tamoxifen_brst_cancer.html

Cindy -- your stats are way off.  The chances of your original cancer returning depends a great deal on stage and grade -- there is no one stat for all of us.  The 440% is also way off.  I can see how such a study is important for women who are taking tamoxifen for prevention but for those of us with invasive disease it has proven its life-saving effectiveness in many, many studies.

 I personally know of a woman who has had bc mets for over 20 years -- never been NED, had mets the whole time.  For ten years tamoxifen kept her mets stable -- thats a powerful effect, and ten years of living that she would not have otherwise had.   

Member,

Thank you for your attempts to keep the pros/cons of Tamox real.  I am Stage 0 (LCIS/ADH).  I have not yet decided what I will do (take or not take Tamox).  However, I, unlike MANY women, have that choice.  I think to come here on this board and denigrate anyone using Tamox, or writing that its benefits have not been proven, is.....looking for a word that will not insult anyone....the height of hubris.  It is fantastic that some of you have refused Tamox, done well and are happy with your decision.  BUT, the facts are that Tamox does reduce the risk of recurrance.  For the women, and there are MANY, who have had a recurrance, and are now struggling with another BC and/or mets, I can definitely understand their wanting to try ANYTHING to live a little longer. 

Member, I do sometimes go on the Stage IV boards, and I have a friend who has Stage IV.  I do not post there because I do not feel it is appropriate, but I understand your point about going there and really seeing what Stage IV women go through.  I see my friend, thin, a vegetarian who only eats organic, VERY into supplementation, and SHE gets stage IV.  I am overweight, used to smoke, and I get Stage 0.  No one really knows why or who will get BC, but I cannot stand people judging those who get BC or who decide to do chemo, rads, hormonals.  We all have to do what is best for us, but we should keep in mind that we may say "I would rather have a recurrance than use Tamox," but that is because we HAVE NOT had a recurrance. 

There is a lot of controversy when it comes to LCIS & ADH.  It is not like DCIS where the protocol is usually rads and/or hormonal therapy.  Some doctors will say that LCIS is pre-cancerous, while others will say that it is Stage 0.  What is known is that there are abnormal cells growing in the lobules of the breast.  

Because having LCIS and/or ADH or ALH puts one at a higher than normal risk of developing breast cancer, doctors usually suggest some form of hormonal therapy.

I had to quit Tamoxifen after about 8 months.  Started out okay - increase in hot flashes that I was already having, then vision changes, dry eyes, mood swings, etc.  I thought that this was just an indicator that the drug was working in my body.  Then periods got wonky (premeno @ 48). Leg and foot pains that I have never had before.  Then the depression hit.  Now, years ago I was on effexor for depression about 3 years to help me get over a huge family loss and I had gained 60 lbs that first year  on effexor and felt numb the entire time.  I was not going down that trail again.  Anyway, I noticed that my driving was getting kind of aggressive.  I was having no problem hitting 85mph on the interstate (my normal commute) and drafting off the car in front of me.  About a month ago I began to see that I was planning my suicide....OMG!  What am I thinking?! So I immediately cut back to 1/2 dose for 3 days and no change.  Then I stopped taking it cold turkey.  In 2 days I woke up feeling like a huge cloud had lifted.  The suicide planning gone, the depression gone.  I still have the pains, hot flashed, eye things going on but at least I'm not planning on ending my life!  I met my oncol. last week and he agreed I did the right thing and I need to avoid Tamoxifen.  I am just sharing my story because I think it is important to realize that this drug can do different things to different people.  If you are on this drug and are thinking - wow I am really, really depressed and want to end it all - call your oncologist now!  I think my reaction is rare, but good to know about non the less.

Hi everyone -

I, too have had BIG issues with Tamox - med onco suggested taking 10mg per day as opposed to 20 mg because I am "tiny" and thought perhaps that dosage may have been too much for me.  So, I commenced taking 10 mg per day.  After 7 days, the horrendous s/es returned, particularly the suicidal depression.  So, I stopped taking it and immediately felt so much better . . . told med onco and she said to wait until I have my CT scan on 9/25 to check out enlarged ovaries and we will take it from there - contingent upon the results - I am leaning very strongly on getting the ovaries taken out - I cannot tolerate this drug.  It has been a nightmare.  And no one can talk me into taking it again.  I have made my decision. Quality of Life trumps the living hell of those side effects - I did not mind the hot ffashes nor the aches and pains - but the deep dark depression is something I will REFUSE to suffer from.  That's it.  End of story.

Hi, Annette -

 Thank you so much for responding.  As of now, I am still pre-menopausal (last period 6/10/09) and I did take that test, and was categorized as an "extreme metabolizer."  Which is why my med onco and I are rather perplexed at the difficulties I am having with this drug.  Believe me, I gave it a chance!  And there is no other medication I am taking right now that interferes with the Tamox - I did get a copy of that list.  So I suppose I am just one of those flukes or aberrations who cannot take this drug, despite the allegedly positive aspects of the testing. Well, we shall see.  I still think the best thing I can do right now to have my ovaries taken out.

Hi Britt:  I am there with you.  I was put on Femara then talked med onc into doing Estradiol test came back high which meant my ovaries were still working.  Med told me to immediately quit taking the Femara and then wanted me on Tamox.  I then requested the CYP2D6 which he said he never heard of.  After a couple of hours he called me back and agreed on the test.  At that point I had read the list of meds that interfere with the metabolism of Tamoxifen and told him I was on Buproprion (generic of Wellbutrin) and that he needed to read my medical records a little closer.  We also discussed that I had an ovary and needed to talk with my gynecologist about having it removed.  I have taken the test and am now awaiting results.  In the meantime I spoke with my gynecologist and found out after 18 years of her saying she left one ovary that she had left both.  I am seeing another gynecologist to discuss removal of both ovaries.

The more I read about Tamox and the taking the inhibitors the more I do not want to take either.  If we remove all the estrogen and then the possibility of cancer recurring and coming back ER- that would be worse.  What are we to do?  I have totally lost trust in doctors and am tired of being a guinea pig..... 

My insticts are telling me get rid of the ovaries, no tamox and no inihibitors.  I have researched so much my head is spinning.  I don't know who to believe or what to do.

Seem to have to fight my own battle with the med onc. Small cancer center here. Have appt. with new gyno on 9/10 and should have results from CYP2D6 test soon after. Will give my thoughts to both when I have appts. with them.

I started tamoxifen in November.  I think it took a month or 2 for the side effects to kick in..  Increased joint pain, increase in the hot flashes that I already had been occasionally experiencing,  problems with orgasm, vag discharge, and I was very weepy.  I had some emotional stuff going on at the time as well, so don't know if the tamox caused the weepiness or not.  And with PMS, I've always typically gotten weepy with hopeless feelings.  Now my periods were becoming very erratic even before tamoxifen, skipping for months at a time, and up until recently, I would feel PMS coming on , but then no period.  My last period was in March, and I haven't felt the PMS moodiness in months, so I'm thinking maybe my hormones have finally stabilized, maybe perimenopause is over?  

I took a self prescribed 6 week break from tamoxifen starting in June,  which I knew my Onc would probably never approve.  I met women on here who had done that for a few weeks and reported that the side effects came back less intense afterwards, so being an experimental type person, I had to try that for myself.   The hot flashes and loss of libido/ability to climax were really getting to me.

So in the 6 weeks I was off of it, the hot flashes did get less intense and less frequent, the vaginal discharge disappeared, and the week that I started back on the tamox , my sexual sensations all came back.  It's been 3 weeks and they're still going strong, and last week, all of a sudden, the hot flashes almost disappeared. I'm still getting them, but they have become so mild, that I barely can tell I am having them sometimes.

I'm happy I did it, because I think it did me some good.  I feel like I can stay on it now for at least another year or 2, because I don't want to do AIs or remove ovaries.  I'm so afraid of what either of those would do to my hormonal balance, and fear that they  would expedite the aging process of my body.