Does anyone say no to Tamoxifen

cs718

I said no to Tamoxifen in l997 when i had a Stage one treated with lumpectomy and radiation.  You are never stupid for questioning treatment.  never ever ever.  I am very happy with that decision;  I was 47 years old and single, and had negative lymph nodes.  I did not want to be thrown into menopause and the 4% decrease in risk of recurrence wasn't good enough for me from tamoxifen.  I also refused chemo which another doctor recommended and I was good for 12 years.   I now have a Stage IIa that was found when I had a breast lift, of all things, and since I had my free pass once, I had a mastectomy on that breast and am now taking a 4 treatment round of chemo and yuck, an aromatase inhibitor.  But that's because I'm having this a second time around and the next time, it may not be so treatable.  It's a very very personal decision.

sheaves

Hi everyone,I was diagnosed in may 09 with stage 2,2/15 nodes and est-,prosgesterone+,her+ and I did  chemo(had every SE in the book),now doing rads and will then start tamoifen and I am really scared because i am estrogen - and also high grade ,I haven't heard from anyone who is in the same boat  as me.

vivre

Sheaves, why not go to a doctor who understands hormones, and have them test your hormones to see exactly what the levels are. It should help you make a better educated decision. I will never in a million years understand why they prescribe drugs based on a path report only. Why don't they test our hormones too, so we can see if we really have an inbalance. It is just crazy.

07508125

Do you regret your decison back in 1997 not taking tamoxifen?

LaurieRR

Anyone out there on tamoxifen and still have your uterus and ovaries??  I've been on tamoxifen  for 5 months now.  If tamoxifen causes uterine cancer, why wouldn't my doctor's order a hysterectomy??  My gyn said that he ususally doesn't test for uterine cancer until 12 months after the start of tamoxifen..Am I crazy here?  Why wait until you get uterine cancer to remove the uterus????? Can anyone out there help??

Thank you!!

rgiuff

Laurie, I have been on tamoxifen for over a year and still have both my uterus and ovaries.  The chances of tamoxifen causing uterine cancer are very low, about 2 out of 1,000, so it would be crazy to go through major, possibly life-altering surgery, just on the slim chance that something could occur.  I went for my first transvaginal ultrasound about 10 months after starting on tamox, and everything was fine.  I will go back every 6 months to have the same procedure.  Detection is very good for this type of problem. 

If I were to see anything potentially bad developing, I would stop the tamoxifen.

MTG

Laurie,

Like RoseG, I still have my uterus and ovaries and going for transvaginal ultrasounds every 6 months. And yes, while the risk of uterine/endometrial cancer is increased on T, the % is still incredibly low...even lower if you continue menstruating since you're sloughing off the lining of the uterus.  As I understand it, many women on T have a hysterectomy and/or removal of the ovaries (oopherectomy),  because of ovarian cysts and uterine polyps which also form because of T and potentially can rupture. My approach: monitor things every 6 months so if something changes, it can be tracked and/or addressed before it becomes problematic.

Anonymous

I took tamox for 5 years and fortunately had very minor SEs, mainly hot flashes. I decided I would rather take the very low risk of serious SEs from tamox (less than 1% for blood clots or endometrial cancer) than the very high risk of invasive bc in my future (from LCIS and family history of ILC). Now I take Evista for further preventative measures.

Anne

ibcmets

I did not want to take tamoxofin, so I had to take Lupron to push me into menopause in order to take Femara instead.  I know I have to be on something, but; being ER+, I wanted to eliminate as much estrogen as possible.  I'm close enough to menopause being 52.  Yes, you can get a blood test  to check estrogen levels.

 Terri

Joyce-PA

Laurie,

I have been on tamoxifen for 2 years and still have my uterus and ovaries.  I also go for a trans vag ultrasound every six month.....and so far everything ok.

Joyce

catcoffman

Question for Crystalady,

I am curious about something,  you said you had Breast Cancer 10 years ago, and then 2 mths later you found out you had cancer again.  You mentioned you have meds in the spine.  I was wondering if they found you 2nd diagnosis to late so that it was metatistic, or did you find out you had cancer again and it went ahead and spread even though you underwent treatment.  I am in my 4th year on Tamoxifen.  I had a lumpectomy, and opted for nothing but tamoxifen.  And I have always wondered that if cancer came back is it possible to have it and not know it even with screenings, Thank you for  any light you can shed on this.Good luck with your meds treatments and best wishes for you

Luna5

In answer to the original question posed....Yes, some of us say no to Tamoxifen and Aromatase Inhibitors too. 

I researched until my head was about to explode before deciding not to take any of that.  It is a personal decision.  I have changed everything else I eat, drink and do.  My onco thought I should take Tamoxifen since that is what the OncotypeDX test is based on even though she adamantly opposed my having the test at all.  She also adamantly opposed and refused to order the CYP2D6 test which I got another doc to order and low and behold I am missing an alele on the gene which makes me an intermediate metabolizer.  Even the Oncotype people (genomic health) say that an aromatase inhibitor would probably give better results than Tamox. but when they began their trials they had Tamox not aromatase inhibitors..

This same onco insisted that I should do chemo and NOT have the Oncotype test done.

She did want me to choose between two different chemo protocols.

Interesting that I am qualified to decide which chemo plan is best but not intelligent enough to decide if I want the results of the Oncotype and CYP2D6 tests to weigh in my decision.  Or intelligent enough to decide if I want Tamox or AIs.  The Tamox prescription is still unopened.  I have spent the year over on Natural Girls and various other threads about nutrition and natural aromatase inhibitors, progesterone, Vit D 3, etc, etc.  I take over 50 pills a day some of which are also aromatase inhibitors like Chrysin.  I am still researching and changing my regimen.

eliz46

Hi Luna... i am just writing to let you know that i 2 am not taking any meds from doctors.. but i did do the chemoand also have surgery to remove bc.  i am almost on 2 years free of anything.  i do have a nutrition homeopathic doctor.  i was told from my doctor that it was my choice to take tamox but after seeing my gyno and hearing i needed a hestorectomy ohhhhhhhh  we need our overies,  menapause is a normal function of thefemale body.   i have done alot of research for years and years, i have always gone the natural way. since all of this bc is gone i am now dealing with RA  ...tomox does a number on your white blood cells, it changes your whole body chemistery.  well my white blood cells have settled down now and im on a whole food diet ..no RA   ...... just lyme disese that has manifested into RA  hummmm makes me wonder to much about if the docs out there really know what there doing ....to all the woman out there ...Please take charge of your body ....know exectly what the doctor is doing to yu and research all of your meds. the internet is a great tool....

Aquarius28

fairy49 ~

I am new to this discussion board and trying to read up. Since my next step is TAM or Arimidex depending if I remove my ovaries.   I am interested in taking DIM and other supplements.  You mention in one of your posts: seeing naturopathic MD, who is a microbiologist and specializes in women's health, hormones.  I live in HB, CA can you give me a name or webiste.  Thanks for much for your post and the info on Bioresponse.  I am all about quality of life, and understand I will be sleeping in the bed I choose to make.  Cause and effect, but at least it is my decision.

Ktluedtke

I took Tamoxifen for 4 years until I got my Ovaries out, then went on Arimidex, I didn't have ANY SE to speak of, a few hot flashes... but I was in and out of Menopause from Chemo.  The Arimidex however, made my joints very soar and I only stayed on that for a few months...my Onc game the clear a bout 6 months shy of my 5 year mark, saying I could be done with my treaments as I am also HER2+ and also took a year of Herceptin.  ;-)

BarbGio

Yes do not take it until you have read about Tamoxifen from web site of 'The Life Extension Foundation'. Arimidex is just as bad.  Talk to your Doctor about Indole 3 Carbinol (Look it up on Web) and also Calcium D Gluterate (Nothing todo with Calcium) Look it up on the web.  Both Natural products not drugs No Side Effects.  Indole 3 Carbinol/DIM did better in clinical trials than Tomoxifen and NO Side Effects. Both available only through Medical Practitioner from Thorne New Zealand.

Both fantastic.

BarbGio

Yes do not take it until you have read about Tamoxifen from web site of 'The Life Extension Foundation'. Arimidex is just as bad.  Talk to your Doctor about Indole 3 Carbinol (Look it up on Web) and also Calcium D Gluterate (Nothing todo with Calcium) Look it up on the web.  Both Natural products not drugs No Side Effects.  Indole 3 Carbinol/DIM did better in clinical trials than Tomoxifen and NO Side Effects. Both available only through Medical Practitioner from Thorne New Zealand.

Both fantastic.

calamtykel

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. 

Member_of_the_Club

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. 

Member_of_the_Club

I was directing my last post to calemtykel.

calamtykel

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.  

Member_of_the_Club

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.

Chevyboy

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....

07508125

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.  

woodstock

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.

 

Nokomis

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!

CrazyKitties

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

CrazyKitties

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.

angelfromabove

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.....

Chocolaterocks

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