Taking Tamoxifen

DesignerMom

Rachel- I don't think you owe anyone an explanation, least of all us.  Ultimately you are the one to make this decision, whatever makes it easier for you is your personal "right" decision. For me, since being diagnosed, I feel more need than ever to be "authentic", certainly with my family and friends.  I SO get that this is not a dress rehearsal, this is the one life we get.  My telling hard truths and being accepted for my absolute truthful self seems more important now.  I am very fortunate to have a family and friends who completely accept ANY decision I make, especially with BC. As you pointed out how toxic the Tamoxifen pills are (scary to say the least), I like your idea of donating your pills to someone who can't afford them.  I bet there is a thread here about that!  Better to have them used than to go into the landfill or water system.  Wow, just imagine all the Tamoxifen laden urine that's being flushed!  I wish you peace and good health.

Member_of_the_Club

Rachel, by family do you mean your children and husband?  Or brothers and sisters?  I think there's a difference.  Because when your disease progresses and you get sicker they will find out you haven't been taking your pills and whatever tension you felt before will be nothing compared to what you will feel from them.  If someone I loved did something like this I would never forgive her.  Siblings are one thing, but I just hope you aren't treating a spouse and children this way.  We live for our children, we teach them how to live and eventually we teach them how to die and you could be teaching yours that you do these things by hiding and lying.

No hugs from me, especially since you've never tried tamoxifen so you don't know how it will affect you and because you are lying to a doctor -- a fiend no less, who lies to their friends?--- and to your family.  No hugs from me.

 Keep in mind, everyone, that Rachel has claimed in another thread that she is stage IV.  Its one thing for someone with early stage to skip tamoxifen, another thing for someone with mets.

Oh, and you can't legally donate pills once the container has been opened (maybe once the prescription has been filled and transferred, not sure.)  I learned this when my mother dies, leaving lots of expensive meds. 

Paula1231

Brenda,

As I am ERA PRA positive I will be taking Tamoxifen.  My Surgeon says that it will have a healing effect on my good boobie and possibly keep it cancer free.  While there are common side effects, mainly bone pain; constipation; coughing; hot flashes; muscle pain; nausea; tiredness; vaginal discharge; and weight loss
they are more like menopause.  Also, once the treatment is over, they will go away.  Removal of ovaries is permanant.  Don't be afraid, but do what you think is best.  I will pray you make the right choice for you. 
Read more: http://www.drugs.com/sfx/tamoxifen-side-effects.html#ixzz0vJMZPLai

changes

Hi all,

We each have to make our own decisions about what we are willing to do for our own recovery. That said, though, I think Tamoxifen gets a bad rap. I was scared to take it, too, but wanted to be sure I did EVERYTHING possible to keep myself healthy. I just finished my first month. I had a couple days of bad moods, two hot flashes (and none since), and a bit of leg pain. Nothing I cannot live with, and well worth it if it keeps me healthy. Also, the day after I was diagnosed, I radically changed my diet - no more fast food, five vegetables and fruits everyday, extreme reduction in sugar. It was hard, because I've always eaten terribly, but now I've gotten used to it, and even WITH Tamoxifen, I've lost 6 pounds.

I think sometimes we unintentionally frighten one another with what we post We all need a safe place to talk about our fears, concerns, and side effects, but  those who are doing well often don't post, and so people get a distorted view. So far, I've found the side effects of Tamoxifen are much less than I was led to believe, and I've been relieved. Also, there are options for coping with those side effects, but you do have to talk to your doctor about what's going on.

Good luck to everyone, whatever choice you make,

Karen

Anonymous

Rachel ... theres no such thing as a white lie. A lie is a lie is a lie.... and be sure your lies will find you out... sooner or later. . Bending the truth to anyone is deception, plain and simple. I couldnt agree more with Member....except as despicable as lies are, Id still be always ready to forgive someone as that is part of my belief .... 

 Member said... "Because when your disease progresses and you get sicker they will find out you haven't been taking your pills and whatever tension you felt before will be nothing compared to what you will feel from them. If someone I loved did something like this I would never forgive her."

 Why dont you stop for a moment and consider what Member has said. I would love to send hugs but I aint gonna hug a blatant liar. Every woman has the right to choose what she will do and what options she takes, and this is NOT about denying you that right, so please dont make out that thats what is happening. This is NOT about minimizing what you have gone through either. We all know how horrid Cancer is. People here who are more knowledgeable than you or I , are trying to help with their experiences. If you dont want to learn from them then why bother posting? ... unless of course youre the one who knows it all, and we should all come to you for advice, but then how do we know youre not lying  anywayz?

Musical

Beesie

Brenda, I made the decision to not take Tamoxifen. I made that decision based on the specifics of my diagnosis (DCIS with a microinvasion), the type of surgery I'd had (a single mastectomy), my future risk to have a recurrence (about 1% - 2%) or get BC again (approx. 20% in my remaining breast), and my personal tolerance of risk (quite high).  It was the right decision for me, based on all those factors.  But if any of those factors had been different - if I had a higher risk of recurrence, for example - my decision might have been different.  I also know that others who've had a similar diagnosis and surgery but who have a lower tolerance for risk have made a different decision and have chosen to take Tamoxifen.

My point is that for each of us the benefit/risk equation of taking Tamoxifen is different, and how we look at the benefits and risks is different.  So what's right for one woman is not necessarily right for someone else.  If you are trying to decide on whether or not to take Tamoxifen, you need to look at it specifically from the perspective of your own diagnosis.  Consider that Tamoxifen can provide 3 different benefits:

1. It can reduce the risk of a local recurrence in the breast which had BC.  This is most relevant to those who have a lumpectomy.

2. It can reduce the risk of a distant recurrence (i.e. mets).  This is most relevant to those who have invasive cancer and particularly those who have larger tumors and/or positive nodes.

3. It can reduce the risk of getting a new BC in either breast.  This is most relevant to those who have a lumpectomy or a single mastectomy.

Someone who has a bilateral mastectomy for a pre-cancerous condition (ADH, LCIS, for example) or a non-invasive cancer (DCIS) has at most a 1% - 2% risk in each of these three categories and therefore would derive very little benefit from taking Tamoxifen.  For women in this position, the risks from taking Tamoxifen almost certainly outweight the benefits.

On the other hand, someone who has a lumpectomy for a large invasive cancer and who also has positive nodes may have a fairly high risk in each of these three categories.  For women in this position, the benefits from taking Tamoxifen almost certainly outweigh the risks.

Most of us fall somewhere in the middle.  So you have to understand your own risks in each of the three categories in order to determine how much benefit you will get by taking Tamoxifen.  It is important to understand, as Rachel points out, that Tamoxifen does not eliminate the risk but only reduces it.  For example, if you have a 20% risk of local recurrence, Tamoxifen can reduce your risk to about 11%.  What this means is that of 100 women with your diagnosis, if none took Tamoxifen, 20 would have a recurrence.  But if all 100 take Tamoxifen, 11 will have a recurrence.  However by taking Tamoxifen, 9 of the women who would otherwise have had a recurrence will not have one. 

As for the risks, generally it's believed that 2% - 4% of women will have serious side effects from taking Tamoxifen.  Whether this is an acceptable risk or a too high a level of risk all depends on how much benefit you will get from Tamoxifen, and that depends on your risk level in each of the three categories I mentioned earlier.  So, to make an educated decision on whether or not Tamoxifen is right for you, you really need to understand your risk levels. 

Rachel, you have every right to make the decision that you think is best for you.  Based on my understanding of your diagnosis, if I was in your shoes, I'd made a very different decision (I would take Tamoxifen) but that's me, not you.  Where I have a problem is in how you have presented the data on Tamoxifen.  Everything you presented is correct (I am very familiar with the NSABP P-1 trial, as well as many of the other trials) but you presented only partial data.  NSABP P-1 was a trial of high risk women - women not yet diagnosed with BC.  It did not address at all any reduction in recurrence - local or distant - for those who've already had BC.  The women here, like Brenda, need to consider both recurrence benefits from Tamoxifen and benefits to their remaining breast (for those who have lumpectomies).  So, to add to the NSABP-P1 "high risk trial" data that you provided, here is some additional information about Tamoxifen trials on women already diagnosed with breast cancer:

The Early Breast Cancer Trialists' Collaborative Group (EBCTCG) conducted worldwide overviews of systemic adjuvant therapy for early breast cancer in 1985, 1990, and again in 1995.  In 1998, 10 year outcome data were reported for 36,689 women in 55 randomized trials of adjuvant Tamoxifen using doses of 20 to 40 mg/day for 1 to 5+ years.....Among women with ER positive or unknown breast cancer and positive nodes who received about 5 years of treatment, overall survival at 10 years was 61.4% for Tamoxifen vs. 50.5% for control. The recurrence-free rate at 10 years was 59.7% for Tamoxifen vs. 44.5% for control. Among women with ER positive or unknown breast cancer and negative nodes who received about 5 years of treatment, overall survival at 10 years was 78.9% for Tamoxifen vs. 73.3% for control. The recurrence-free rate at 10 years was 79.2% for Tamoxifen vs. 64.3% for control.

http://www.drugs.com/pro/tamoxifen.html#ixzz0vK6hyWXb

One note on these results:  Keep in mind that these are studies from 1985 to 1995 and the women in these studies had been diagnosed approx. 10 years earlier than that.  So don't get hung up on the recurrence and survival stats, which have improved substantially since that time.  What's important is the difference in results between the Tamoxifen groups and the control (non-Tamoxifen) groups.

Brenda, I hope that this helps you sort through your thoughts about Tamoxifen.
 

DesignerMom

Beesie- Thank you so very much for this step-by-step explanation on the Tamoxifen decision-making process.  Like Brenda, I am really struggling with this decision.  I am still trying to determine what my exact risk of recurrence is. My Oncotype is 16, but as I had a micromet in one node, I think it is 15%? I wish I was better at analyzing all this, guess I am learning.  As I have a non-symptomatic blood condition, the SE from the Tamox may not balance the benefits.  Your clear, objective advice will be very helpful.  Wishing you continued good health.

changes

DesignerMom,

The risk of recurrence based on your oncotype score ASSUMES you will be taking Tamoxifen for 5 years. If you do not take the Tamoxifen, your recurrence rates will be higher. If you look at the results Genomic Health sent to your doctor (ask the doctor for a copy if you don't have it), it makes this clear.

Karen

DesignerMom

karenlen-thanks for reminding me that the Oncotype predictions are assuming we take Tamoxifen..  I did know that, but forgot it.  So many reports, statistics and chemo brain, I appreciate any clarification.

CoolBreeze

Rachel, you get to decide what treatment you accept and what treatment you don't.  If you don't want to take tamoxifen, then don't do it.

I don't understand the need to lie about it.   Tell your doctor/family friend and your family that it is your choice, based on your understanding of the side effects and be done with it.  If they try to talk you into it, say your decision is made and the conversation is closed and refuse to discuss it further.  

If you have the strength to make this decision, then have the strength to stand by it.

I am one of the unfortunates who has some bad tamoxifen SEs; mostly bad bone pain and insomnia.  For now, I'm taking it because I have an aggressive cancer and want to live, and studies are clear that it helps.  However, there may come a day when I decide I don't want to any more, and if and when that day comes, I will stand up and tell the people near me my decision. 

And, I will hear their viewpoint and when they are done, that will be it.  I will say STFU if they continue to nag.

Sneaking around and hiding for five years sounds very sad to me, like nobody trusts you to make a responsible decision about your own body.  I hope that isn't the truth.  

KeepingtheFaith

Something I have not seen anyone address in regards to lying about taking Tamoxifen is how that is going to alter the statistics for recurrence and survival and possibly cause another woman to make the wrong decision. I am sure that one case of someone lying about this shouldn't have a large effect, what if there are others?  Please be honest, at least with your oncologist, for the sake of others.

Deb

perky

As far as I know, Tamoxifen is the ONLY insurance I have. That makes me take it daily without question. It gives me a small feeling of control and in my case the side effects weren't worse than what I was due to experience in a few years anyway.

If you take Hoodia (available at any drug or vitamin store) it will knock your appetite right back down to normal so that you don't have to gain weight. I only had to take the Hoodia for a few weeks for everything to calm down.

Australia0099

HI

Have had double mastectomy, chemotherapy and a year of tamoxifen and have decided to stop. have not slept longer than 3 hours for 2 years, hot flushes, night sweats, weight gain and aching bones. I have decided to live well not live sick.... It seems there is a blanket approach - all get tamoxifen if you are e positive, regardless of cancer grade, lymph node involvement, other treatments and extent of breast removal. 

I also have to wonder about the $$$$ for drug comapanies with a standard 20 mg tablet......

DiDel

WOW this is a heated discussion.

Brenda - I had lots of concerns about the side effects. I expressed them to my doctor and then made a list of all my concerns and questions which he addressed after my final chemo. I love my onc and I respect him and his judgment completely. Let's face it I trust him with my life. He helps me make hard decisions. He spent about an hour and half going over the clinical trial results and studies of Tamoxifen and also explained to me that if I tried T and hated it or had terrible side effects we would stop, it was my choice. He did ask me to try it. I started it for a week but had some late side effects from chemo so he told me to stop until my exchange surgery next month. I know this when my surgery is over I will take it...faithfully...everyday. I know that most of the side effects subside and I know that I love my nieces and nephew more than I could ever imagine. I don't have children of my own but I would do anything to make sure I am around for my sisters, the kids, my friends and myself for as long as possible. I made it through chemo I can make it through Tamoxifen. If God forbid something happens down the road, at least I know and my family KNOWS I fought like hell!!

Diane

rachel5738

Hi there--I just looked at this topic because Tamoxifen is on the horizon for me. I am just about to start chemo, then rads so I won't be looking at Tamoxifen until prob Feb timeframe. When my Doctor reviewed the pros/cons--for me there seemed to be more pros as it will reduce my risk for recurrance. I am young--have two young children--and really want to do what it takes to make sure I am around for a long time. It seems to me, or certainly with my Doctor, that everything is optional--they provide you the information and you make the decision--I'm not sure why you would need to lie about taking it--just tell them that you are not, then they know and perhaps different options or at least they will review your case differently. Just my thoughts. I think that during this whole journey--you need to be empowered with knowledge and also, you need to be confident with your plan.

mobvco3

I was really scared to start the Tamoxifen, but decided to try it before considering a hysterectomy.  My doctor thinks it will slowly put me into menopause.  I'm 45 and will try and take it til age 50.

keltz

Rache., did you start on Tamoxifen.  I am at this point myself right now.

I am new to this Forum, just got on here today.

I am pre-menopausal, stage 1, estrogen positive, had lymphectomy in one breast., had a .6 cm, lymph nodes were clear, it was invasive.  Here are my concerns.

If I take Tamoxifen, (which is scaring me to death) I could gain weight, get blood clots and maybe have a stroke.  Seems that taking Tamoxifen has been known to cause uterine cancer, ovarian cancer and so-on, so you will then have to get a hyster anyway.  Why not just have one now.  I am 51-years old and close to menopause anyway.   I am already overweight, so the weight gain scares me, then the joint pain scares me too as I have alot of joint pain already, I have arthritis.

However, having my ovaries removed will cause the sudden menopause, I know your bones thin, also.  So, basically they are similar, I am trying to weigh the differences here.

What if I just have the ovaries removed, could that cause the sexual problems, I have heard that sex can be painful after a hyster.    But, haven't heard if it causes pain if you just have the ovaries removed thru lap.  My head is spinning.  I do have an appt. this afternoon to discuss this with a female doctor,  but Doctors do not always know the gritty details of what a person actually goes thru.  Does anyone have a view on this or have gone thru this.

keltz

Well went to the gyn and he said that I could have my ovary removed.  I only have one left now.  It was a day surgery, and that I would immediately go into menopause.  I am going to have an ultrasound done on the 8th of March and I will then decide.  I am leaning towards having the ovary removed then to chance the SE with tamoxifen.  I think it would be safer and I wouldn't have to worry about getting cyst's and uterine cancer.  Then I can just take the HR Aridimex or whatever that one is.

scubacat

Keltz, I was about where you are in Nov 2010. I started Tamoxifen in Nov 2010, worrying about all the same stuff about the SEs. I discussed them all with my Onc. I decided I would try it and see, and so far no SEs at all. No weight gain. I am 52 and pre-menopausal and immediately I did not have any periods, but no SEs regarding menopause and then in Feb'11 I had my period back again! (good and bad I suppose, ) So I have just finished first 3 months, and I really do feel OK. I am having a ultrasound as part of routine stuff and that will help check for any signs of uterine cancer, but that SE is very uncommon - or so I have read. I have had no joint pains, I do not feel depressed and even my husband says I'm OK, and not trying to kill him every 5mins! I know this is different for everyone and I consider myself lucky - so far. If we have to endure BC (which is why we're all here) then I will do all I can to kick it/beat it. Good luck in your decision, I know these things are not easy, but do what's right for you.

pinkcandy001

I am also not happy about taking Tamo.

I had 2 left lumps removed. 3mm grade 2, 4mm with 10mm spread grade 1, 2 nodes out no spread,no family history. Had 15 days of radio, I have now been taking tamo for 8 weeks.

I am 53 post meno, with 2 teenage boys. Problems to date: 5th week abit depressed one weekend, which soon passed, very dry skin (i had terrible ezcema as a child, so cant use soap, and certain drugs do infact dry my skin out.) I find i have very dry hands, feet, with occassional vag dryness. Developed a Strep B vag infection due to viral bug I caught after radio which wasnt treated, due to a low immune system, so not feeling too chipper this week.

Has been a bad couple of months on and off. I was told it takes time for the tamo to adjust which can take apparently up to 3 months to sort itself out.   My oncologist said that I have a 56% chance of re-ocurrence, and if i have problems with it, can come off it.

All right for them to say, -  but is it the right thing to do.  I dont fancy 5 years of dry skin which is flaking, vag dryness, and itching, few hot flushes.

Believe it or not I meet someone on a dating site after I was diagnosed (as i didnt know when I meet him). We are still together, after 8 months. He has not been fazed about all of this, but just worries. He is a very patient, kind and is an angel. He never questions me when I say I feel unwell, or when I dont see him for a couple of weeks, it is nice to know that people care.

Has anyone tried alternative medicine, ie: flaxseed capsules, figs healthy diet, grapefruits which are just many of the foods that apparently are good for helping fight against baddies.

Like yourself would love to hear from anyone who has had similar problems and just to hear from others. 

all the best to everyone

Pinkie

scubacat

Pinkie, there are various good books out there to check out about Nutrition and cancer, but it's unlikely any US Dr (I'm British) will recommend any of the remedies which we can take for ourselves if we wish to. You also have to be overly careful about what you put into your body after this BC stuff!!!  I have some emails somewhere from another lady on this site with some other suggestions. I'll look them out and send them onto you.

pinkcandy001

Well went back to onco last week, as tamo unabearable, and my poor body has had to many problems, so coping with tamo hasnt helped to adjust to it.  I was told 4% recurrence without hormone therapy. I am concerned as i have not tolerated the tamo, awaiting bloods as we speak, as last bloods suggested low level of hormones so they need to check pre or post meno. They have suggested Arimidex.  I am willing to try as some of u have said, it gives u that insurance.  Dont know if i can take 5 years of terrible problems on H. Therapy.

All the best to everyone.  P.S. onco said no soya based products at all while on any form of H. Therapy.

Pinkie