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All Topics → Forum: Hormonal Therapy - Before, During and After → Topic: Does anyone say no to Tamoxifen

Topic: Does anyone say no to Tamoxifen

Forum: Hormonal Therapy - Before, During and After — Risks and benefits, side effects, and costs of anti-estrogen medications.

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Posted on: Mar 28, 2009 09:43 PM

skippyrcis wrote:

I have been prescribed Tamoxifen by my oncologist.  I am not sure I want to take it.  I am told that not everyone has uncomfortable SEs.  My oncocyte score is a 13.  I have had BM and currently have the TEs.  Luckily I don't have to do chemo or rads.  I just wonder if it is worth the 4% decrease in reoccurance.  I probably sound idiotic for even thinking about not trying it.  Maybe I will wait until Wednesday.  I have my GYN appointment that day.


Dx 1/2/2009, IDC, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Jan 23, 2011 06:54 AM calamtykel wrote:

Hello all -

I realize this is sorta an old topic, but one that is pretty hot regardless!  I started tamox December 26.  Four days ago I woke up with incredible vertigo.  I couldn't walk straight - and felt like my left leg was weak.  I went to the ER and they checked me out - had to have a ct to the head  :(  (nothing like more rads to the mix...) but they said I was okay.  Over the course of the day it went away.

Since then I have been experiencing extreme anxiety and depression.  I have had dizziness on and off, but what's worse is the sleeplessness, anxiety and reduced cognitive function.  I feel as if I'm in a tunnel some of the time and disconnected and spacey.  I cannot sleep at all and when I do I wake up in a panic every few hours. 

I decided after much prayer and reading to discontinue the tamox - take a vacation from it and see if things even out.   I cannot and will not live like this-yes, I could add another "drug" to the mix in the form of an anti-anxiety, but what's this doing to my body inside?  I'm an avid exerciser and have been doing an hour a day.  Yesterday I tried to go running and I coudln't do it - felt like I couldn't breathe and was dizzy.  

I see a naturopath  and am otherwise very healthy.  Right now he has me on many different things - a mushroom blend, green sprouts powder blend and other anti-cancer things.  I promised myself I would just plunge straight into tamoxifen and not read about it but after my symptoms this week I'm reading all I can!    I'm frightened at the liver toxicity of this drug - they found in rats that it permanently bound to their DNA.    He is unhappy with tamoxifen and I know he would be willing to run some bloodwork if necessary to check my hormone levels, etc., if I go off of it.

My question is twofold.  I cannot find anyone who will give me real statistics about this drug.  I"ve read everything from 3 percent to 69 percent!!      Well, when I went to Lifemath and calculated my survival, it increases it by 4% over ten years.  I told myself I was willing to do anything to increase my survival, but in all honesty I have a quality of life thing too and if this will mean beating up my body in other ways I'm not willing to do it.  I've done eight rounds of chemo and FRANKLY that seemed a breeze compared to the tamoxifen.... I'm 41 years old, and I do know that tamox works much better for women over 50 from the statistics I read.  

 My other question is for those on natural estrogen reducers.  If you could give me a list of things you are taking or recommend for me to bring to my naturopath to tweak my program, I'd be really appreciative!!   

I just feel like what's the point of trying to build up my body now that chemo is done, if tamoxifen seems to be tearing it down....... :(   I was totally willing to give tamox a whirl and had a good attitude about it but after this week I'm changing my mind. 

For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. Isaiah 41:13
Diagnosis: 6/12/2010, IDC, 1cm, Stage IIa, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Jan 23, 2011 08:15 AM Member_of_the_Club wrote:

Please do two things:

1.  Treat your anxiety and depression.  They are medical conditions that are causing you real suffering and you can treat them.  This should be your number one priority right now.  It sounds like what sent you to the emergency room was a panic attack.  Been there, done that.  This can be treated.

2.  Tell your oncologist that you stopped the tamoxifen.  You should be talking to him or her, not us.  Only your oncologist can tell you the stats that would apply to you and you aren't going to get that information trolling the internet or posting here.  The same is true for side effects.  Finding out about side effects on the internet does not provide any information about the likelihood and whether its rational for you to consider them in your decision.  Liver toxicity, for example, is a possible issue with ANY drug that metabolizes through the liver, including tylenol.  That is generally not going to be an issue or concern for you because your oncologist will be doing regular liver panels and will react to the problem at the first hint of trouble.  This happened with my husband and his cholesterol meds (where it is more common).  he had a blip in his liver tests, changed meds, and all is fine.  I've never heard of it actually being a problem for anyone on tamoxifen. 

I've followed your posts and you are getting increasingly frantic.  This is not a good mindset for making any decisions.  Please talk to your oncologist and also get a referral to a good psychiatrist.  Everything will be fine, but you need to take care of yourself. 


Diagnosis: 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jan 23, 2011 08:15 AM Member_of_the_Club wrote:

I was directing my last post to calemtykel.


Diagnosis: 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jan 23, 2011 10:17 AM calamtykel wrote:

Thanks Member - I don't feel that I'm getting increasingly frantic--I'm trying to gather as much information as I can on this medication to make the decision that is right for me.  Tamox isn't in the same class as say, tylenol - it was deemed to be a carcinogen in 1998 by the FDA.  It has been shown to cause not only uterine cancer but also liver cancer in lab rats and other liver problems in humans.  It has also been shown to bind permanently to liver DNA - something other drugs that are processed through the liver don't do.  Every single day for five years is a long time and I need to be comfortable with my decision.    I'm not saying it's not for ANYBODY or even that it's not for me, but this isn't a decision I wish to enter into lightly and I want to be as informed as possible-that is why I posted on both the "bottle" board and this one as well.  
If I decide to go with the tamox, I am still interested in all the alternative therapies.  My naturopath cured my lyme disease three years ago when no other doctor could and he completely cured my six year of a chronic kidney infection - I was told she would need surgery for drainage, etc.  He fixed her in six days -when we went back to the urologist, her urine was completely free of blood and pus.

So as you can see, I do put a lot of faith in natural medicine.  HOWEVER that doesn't mean I've kicked chemical medicine to the curb - I went through an aggressive four months of chemo to prove it.  

I'm just trying to get as much info as possible.  What I do know is that I've had increased dizzy spells over the past four or five days and a ton of brain fog.  Yes, I can treat depression, but I also intend on finding out of this is the tamoxifen.  

For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. Isaiah 41:13
Diagnosis: 6/12/2010, IDC, 1cm, Stage IIa, Grade 2, 2/12 nodes, ER+/PR+, HER2-
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Jan 23, 2011 10:30 AM Member_of_the_Club wrote:

I hope you don't mind a bit of skepticism.  I know there is a link between tamoxifen and endometrial cancer, though with the current lower doses it is very rare.  I have not heard of a link with liver cancer.  Tamoxifen has been in use for many years, so I think the long term side effects are known (though initially it was given in higher doses and for longer periods than now, so the side effect profile would be greater for some long term studies).  I think all of this is a balancing of costs versus benefits and thats why a conversation with your oncologist is important.  Your cancer profile is similar to mine (though my tumor was much larger and unless they've changed the staging system I believe your positive nodes make you stage II) and for me the potential benefits far outweighed the risks.  Then again, I didn't have bad side effects.  I do urge you again to treat the anxiety and depression if you aren't.  I've seen too many women say "its because of the treatment,"  or "its because I have cancer,"  which all may be true but that still doesn't eliminate the suffering.


Diagnosis: 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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Jan 29, 2011 04:48 PM Chevyboy wrote:

Hi Gals, could anyone please answer a question?  I have been on Tamoxifen for a little over a year.  My left ear has been "plugged up" for over 2 months.  I've been to the Primary Care Doc, & she wanted me to try a month of Claritin, the nasal rinses, humidifier, and the prescription nasal spray.  Didn't make any difference.  My ear is "clear"...the problem is in the inner ear...& I'm waiting for the referral to see an ENT....Is it possible it is the Tamoxifen...now?   Everything just sounds "muffled"...The PC Doc, said it "could" be a polyp...anyone heard of this?  Thanks....

Don't walk ahead of me, I might not follow. Don't walk behind me, I may not want to lead. Just walk beside me & be my friend.
Diagnosis: 10/26/2009, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 9, 2011 04:25 PM 07508125 wrote:

calamtykel, i felt the same way when i took tam.  Very spacey and like i was floating.  i called by dr and she told me to get off for a weak and then start back taking it.  i did just as she had told me and it got to the point that i could not function.  I called her back and told her that i had rather be dead than to feel the way i feel.  i got off and it has been 21/2 yrs, with no problems.  i may regret one day not finishing treatment but i could not handle the side effects.  this is a very personal decision for each person but i made my decision and i am living with it.  


Diagnosis: 11/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes
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Mar 10, 2011 10:27 AM woodstock wrote:

I also felt the same way on the tamox.  After 21/2 months I stopped.  Felt better within the week. I stayed off for 3 weeks and felt great again.  No fogginess, minimal hot flashes, sleeping again, etc. My primary dr said I should consult my MO.  I did and he said that I was imaging the SE.  That my age,(50) dictates that I can only be on tamox and to deal with it.  Not the response I was looking for.  I did restart the pills last week at half dose and and within 7 days, I feel SE starting all over again with some new ones added.My ONCO score was 11 with a 7% chance of recurrance.  Not sure if I will stay on.  Feeling crappy is a constant reminder of BC.

 


Diagnosis: 7/16/2010, IDC, 1cm, Stage I, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Mar 10, 2011 08:55 PM Nokomis wrote:

I was on Tamoxifen.  I began 25 years ago and was on it for 7 years.  At first they said I'd be on it always, but when heavy bleeding began, I was taken off the drug.

I did get uterine cancer after that...2001.

But I feel that the uterine cancer was at least able to be taken care of without much anxiety for recurrence as there is with Breast Cancer.  Of course I was already  61 years old, so it didn't matter about children, etc.

A friend of mine refused the Tamoxifen and had it in the opposite breast about 15 years later.

I'm glad I had the Tamoxifen...hot flashes and all!  

The decision, of course, is up to each patient.  I'm just giving my own personal experience.

  Good luck to all who are debating this right now!

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Mar 12, 2011 11:19 PM CrazyKitties wrote:

I stopped tamox after 5 months with extreme side effects, I am pre-menopausal. I started on Lupron 2 months ago---I have no side effects except HOT flashes, DUH!! that's what we want!!! And I get migraines, which I had any way. Tamox made me suicidal and more!!! I was afraid of Lupron, and it turned out to be the best thing for me!!! I take Femara now as well-----no problems, I can't believe it!! Try something else, you will be shocked!! My love to you! xoxoxxo


Diagnosis: 4/2010, IDC, 1cm, Stage I, Grade 1, 0/20 nodes, ER+/PR+, HER2-
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Mar 12, 2011 11:22 PM CrazyKitties wrote:

I hope, sincerely, that when some of you read this, you realize that I had the same issues with tamox. I tried a different route now, and so far, so good. Don't give up.


Diagnosis: 4/2010, IDC, 1cm, Stage I, Grade 1, 0/20 nodes, ER+/PR+, HER2-
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Mar 24, 2011 08:10 AM angelfromabove wrote:

Hello,

I am so happy to find this posting.  I has mastectomy in Feb for extensive DCIS, Grade 3,comedo necrosis.  Because deep tissue margin only cleared by half milimeter, surgeon sent me to radioloigist/oncologist to discuss radiation/tamoxifen.  I am 40 and my nodes were clear.  I did not have chemo.  Radiation will damage 10% of my lung so I don't think i'm signing up for that.  So, then tamoxifen was suggested.  Was told I have  a 5% recurrence rate.  I'm not terribly afraid of 5%.  I am much more concerned of all the side effects of the drug to get to the 1% recurrence rate.  Even if a body doesn't have terrible side effects, I feel the drug is still effecting the body in unnatural ways and may do more harm than good?  I totally understand why you didn't want to take the drug.  I am not sure if the beneift (a 4% reduction) outweighs the risks?  I too feel likes its a circular decision and can't make one!  I am right there with you with your hesitation...Suggestions from others/advice is greatly appreciated!  Confused and concerned.....


Diagnosis: 1/3/2011, DCIS, Stage 0, Grade 3, 0/3 nodes, ER+/PR+
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Mar 24, 2011 09:25 PM Chocolaterocks wrote:

I should have been on this sight before.  Two months ago today was my bilatet masec for my 3.8mm ilc,grade 1 stage 1.... Oncotype 1!! still waiting for the results of my 2nd  vag ultrasound.  Needed to make sure there is no problem before starting tamo and I am still waiting.  I reviewed the 2011 NCCN guidelines which indicate that there is no clear direction on what to do adv therapy is recommended but not agreed upon by all.  I have been on the fence because I am sure whether the risks outweigh the benefits.  So for those of you who are on the fence like me, and think well I will give it a try but will see.  Thank you. My onco wrote me a rx for anti-depressants for my lack of compliance ( my friends laughed, since I am not depressed - yet).

Anyway thanks for letting me vent,

Chocolate


Diagnosis: 1/13/2011, ILC, <1cm, Stage Ib, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Mar 25, 2011 07:05 PM rgiuff wrote:

I've seen the 2010 NCCN guidelines.  For those of you who have seen the 2011 guidelines, where did you find them?

RoseG
Diagnosis: 4/2008, IDC, <1cm, Stage I, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Mar 25, 2011 07:07 PM voraciousreader wrote:

Just google nccn 2011 guidelines. Then register for the physicians guidelines.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 2/10 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ PR+ HER2-
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Mar 25, 2011 10:27 PM Luna5 wrote:

Ilove choc....  I'm catching up on posts while scarfing Dark 85% Green & Blacks Organic Choc.

I don;t know about lobular cancer...but 3.8 mm grade 1 stage 1 with Oncotype of 1 seems really good to me.  You may be able to accomplish anything Tamox might do with Natures Way DIM Plus  and  Melatonin (natural aromatase inhibitor).  So far the only study I've seen (if there is a more recent one...someone please point me to it) is many years old and says Tamox increased the lack of recurrence from 1 in a 100 to 2 in a 100.  "They" called this a 50% reduction in recurrence.  To me it is just a negligible difference of an increase in non-recurrence from 1% to 2%.

Bi-Lat Mast, Hysty/Ooph, OncoType DX 0, We can all make informed choices without making the same choices.
Diagnosis: 4/2009, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Mar 25, 2011 10:29 PM Luna5 wrote:

I get regular e-mails from NCCN.

I signed up a couple of years ago as one of their medical professional options so I could access info which is how I figured out my onco was not up to speed.

Bi-Lat Mast, Hysty/Ooph, OncoType DX 0, We can all make informed choices without making the same choices.
Diagnosis: 4/2009, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Mar 25, 2011 10:45 PM Chocolaterocks wrote:

Luna 5 _ how cool you are an onco 0!!!! You  beat me- yes it is my understanding that if there are 100 people, 98 will not get a reoccurance and 2 will. If you use tam, 1 person will be spared. My question has been-  and others have said: less stress, lots of exercise.. good diet and good weight..... Dont know anything about dim.... but willing to consider other options.

Regarding NCCN= Annette recommended these guidlines and I accidently printed out 140 pages worth but the bottom line if for my type it is recommended but not strongly agreed on. So I suggest that you all make yourself medical practicioners and access the data.

Luna were you also brca positive?

thanks for the help

I really enjoy dark chocolate


Diagnosis: 1/13/2011, ILC, <1cm, Stage Ib, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Mar 25, 2011 10:51 PM Luna5 wrote:

Ilove choc...  I didn't have the brca test so don't know.  Haven't had the test because at this point having it wouldn't tell my daughters whether or not they have it unless they do the test themselves.  If I came out positive, it would just mean they should have the test and wouldn't really change anything I'm doing.  I've already cut out all my parts and quit most things that taste great.

Bi-Lat Mast, Hysty/Ooph, OncoType DX 0, We can all make informed choices without making the same choices.
Diagnosis: 4/2009, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Mar 27, 2011 09:22 PM Chocolaterocks wrote:

Luna

You haved gone through a great deal. It sounds like you have altered your food choices a great deal,

Hang in there.

Chocolate


Diagnosis: 1/13/2011, ILC, <1cm, Stage Ib, Grade 1, 0/2 nodes, ER+/PR+, HER2-
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Aug 18, 2011 10:33 PM ScaredInSnoqualmie wrote:

Hi!  I am brand new to the board and actually this is my first post... I just had a biopsy and was told I have LCIS. Knowing my family history, naturally, I am freaking out, and I have been on the Internet pretty much continuously for the past 24 hours.  Like you, I like Naturopaths and overall, have been leading a very healthy lifestyle: eating no meat, all-organic diet, no smoking, etc., so, yeah, thus the rage... Tamoxifen was the first thing my surgeon started discussing with me at the very first appt, so Tamoxifen is what I have been researching.  Came across this article:

www.all-natural.com/tamox.html

Based on this, I don't want to take it.  Had my MRI today.  Going to be a long weekend, but, I think I have made up my mind: even  if I don't have cancer at the moment, but my genetic test comes back positive, I am going for a prophilactic bilateral mastectomy...

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Oct 9, 2011 10:41 AM bluepearl wrote:

I am considering quiting because of the heart pounding...and I have had two atrial fibrillations in the last 6 years which, if I have one on tamoxifen, could increase stroke. AI's have an even worse profile than this! I have post mastectomy pain syndrome to deal with too and have had some charlie horse's in my feet since taking tamoxifen....who needs more pain? There's a clinical trial going on in Canada regarding metformin (do a search on metformin and breast cancer) so I put myself in the non-placebo group and take a half dose a day...and aspirin and breast cancer, just three baby ones a week have surprising results. Add exercise and a low glycemic diet and hope for the best!


Diagnosis: 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2-
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Oct 9, 2011 01:42 PM, edited Oct 9, 2011 01:42 PM by dreaming

I am a long term survivor, the side effects I had with Tamoxifen and Arimidex were hard on me, my oncologist told me that in my case my survival went from 70% to 73%, I opted out.

It was ages ago, I think it depends on each case.


Diagnosis: 7/7/1993, ILC, 1cm, Stage I, Grade 1, D.C. 0/18 nodes, ER+/PR+, HER2-R. Mastectomy. C.F. M.
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Oct 9, 2011 01:57 PM orangemat wrote:

I'm taking my chances without Tamoxifen. I'm 49 and have been having hot flashes and other similar symptoms for several years now, so why make it worse? As my husband says, my mood swings and other craziness would be made worse just KNOWING that I'm on a drug, so he fully supports my choice not to take it. It's a very personal choice, and not a one-size-fits-all issue.

Esther: UMX NSM May 2011, TE exch & recon July 2011
Diagnosis: 3/17/2011, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+
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Oct 12, 2011 08:58 AM sweetcorn wrote:

After I completed chemo and rads this year, my med onc wanted me to take Tamoxifen for three years and then Arimidex for 2.  I have friends who have had terrible side effects with tamox, one of whom quit it after six months and did not replace it with anything.  I had been on Evista for a couple of years for my bones and I suggested that I could just remain on that.  He agreed!  I do not have any side effects with Evista and it offers bone protection as well.  I figured that I fought the chances of any recurrence very agressively with the chemo and rads, so maybe I can do without the tamox.

Jane

Jane--Oncotype DX 28
Diagnosis: 1/14/2011, IDC, <1cm, Stage Ia, Grade 2, 0/2 nodes, ER+/PR+, HER2-
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Nov 9, 2011 10:19 AM breastcancerfighter wrote:

I am new to this wall.  The reason I got to researching again was because my oncologist found out that I stopped taking the Tamoxifen he suggested I take and was very concerned about me.  I stopped taking it because I don't feel like it is necessarily what is right for my body, plus I had some SE's that were making me feel crazy.  I was reading MarieKelly's first post.  MarieKelly, how are you doing?  I currently see a naturopath here and am trying to do what I can to keep myself healthy.  I feel like I need support with the decision to not take it, because the medical field is pressuring me so much, sometimes I wonder if I am the crazy one for not listening.  Ladies, any advice?

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Jan 20, 2012 02:50 PM, edited Jan 21, 2012 02:04 AM by Moderators

This Post was deleted by Moderators.
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Feb 26, 2012 03:27 PM Luna5 wrote:

bump

Bi-Lat Mast, Hysty/Ooph, OncoType DX 0, We can all make informed choices without making the same choices.
Diagnosis: 4/2009, IDC, 1cm, Stage I, Grade 2, 0/5 nodes, ER+/PR+, HER2-
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Feb 26, 2012 06:34 PM dropjohn wrote:

Tamoxifen cuts your risk of recurrence by half but if your risk is low to begin with it may not be worth it for you - there's a huge difference between a 20% reduction and a 2.5 % reduction.

I went through chemo & radiation; am struggling with the lasting effects of chemo; and have refused Tamoxifen. Quality of life issues are equally important to me as length of life - but I don't have children or a live-in partner; I don't have to suffer.


Diagnosis: 4/2011, IDC, 1cm, Stage I, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Feb 26, 2012 06:46 PM kal21 wrote:

 I am close to being on tamoxifen for a year.. I have a foggy mind? I start a sentence and than forget what I was saying.Is that tamoxifen or from radiation? Also I was having a period at 56 but tamoxifen stopped that.. so should i not be on somethng else?


Diagnosis: 11/11/2010, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR-, HER2-

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