ANYONE STAGE 1, DECIDING "NOT" TO TAKE TAMOXIFEN?

Hi Sparkle et al,

I'm at higher risk (HER2+++) and at time of dx, Herceptin was still in trials and I knew nada about it. I am among those who favor diet, exercise, and low stress over meds. I was premenopausal at age 51 at time of dx. I did chemo, CAFx6, and rads, and limited tamoxifen. My feedback about tamoxifen is +/- for anyone to consider.

The down side for me of tamoxifen is that after chemo, intimacy was still fun and easy. Within just 2 weeks of starting tamoxifen, that was OVER. Painful sex, no desire, and flat out no sense of gender. I continued on T for a year at full dose, trying everything from counseling to yoga to anti-anxiety meds to use of the Estring. Estring made it barely possible to be intimate but only as a favor to my partner. I then cut back to half-dose of T for another 3/4 year. When I learned that T was showing worse outcomes for 1/3 of HER2 positives, I quit it. The hot flashes were less, but I had no improvement in anything else.

The up side for me of tamoxifen: After completion of chemo and rads, my mammo showed my breasts were still very dense. My mammo done 3 months after starting tamoxifen showed that the density was gone. At the time I raised the question as to what  it meant with my health care providers, who dismissed my question. Fast forward to studies done by the Karolinska Institute (reputable institution). They are trying to come up with an accurate way to measure breast density, in order to use density as a way to indicate those who 1) are getting benefit from taking tamoxifen instead of perhaps taking an AI vs those who get no benefit from taking it (instead of 10 years on it), or 2) those who get maximum benefit in a very short period of time because it works so well for them. For me, I believe the extreme loss of density that happened sometime within the first 3 months of taking it possibly meant it was useful.

Google karolinska institute tamoxifen density. I'm just throwing this info out in case it offers some options for you to consider in taking the drug.

I've never taken an AI or even Herceptin and I've never recurred. My tumor was 1.9 cm. I focus on weight management, healthy diet, exercise, and low stress.

A.A.

I'm so glad you posted this and got so many responses-a lot to think about on here. I'm in close to the same boat, low Onco score (11) having a lumpectomy (small low grade tumor 1-1.5 cm and 3 cm dcis around it) and radiation. I'm also peri-menopausal at 51.  Tamoxifen and/or ovarian removal to take an AI therapy are being recommended to me. Both the oncologist and oncological breast surgeon are pushing Tamoxifen pretty hard, but the possible side effects (blood clots especially) make me really nervous so I feel like I need to learn more about this before signing up for the Tamoxifen.  Especially just how much I'd actually benefit from it. I know the Onco score presumes hormone therapy, but I wonder what my risk is w/o it. 

I am on exemestane 2 years to go

 The se's are ok ringing in my ear and itchy skin at night. I just took benadryl for the itching.

I can't wait to get off this stuff I hate taking meds in general.

Its a personal decision, and as stated before everyone needs to follow the path they can live with, knowing the risks that each path has. However, when weighing the decision, it is important to not discount the effectiveness of hormone therapy on preventing recurrance. Please don't toss aside this tx lightly, it has saved many lives. Consider our triple negative sisters who wish they had more tx options. When we are told early stage BC is "curable" its because we now have tx to cure it. No tx could mean no cure. I read research that suggests that even for early stage Er+/ HER+, the hormone therapy may be more important than the herceptin!

Many of the common side effects are very similar to menopause, so you'll eventually get them anyway, it just might be a little sooner than expected. 

The % of women suffering from the more serious side effects is rarer. Your chance of having one of these side effects maybe LESS than your chance of having the bc recur or metastasize if you don't do tx. So you do need to choose what is for you the lesser of the two evils.

I wish you all good luck in your journey.

Sparkle, I'd think the only studies exclusively on patients who did not take tamoxifen would be statistics before the drug became available. On the other hand, there are oodles of studies on patients, some of whom did, and some did not, take tamoxifen. Ask your doctor to help you find them. Here is one that is a summary of 20 randomized trials:

http://www.cancer.gov/clinicaltrials/results/summary/2011/tamoxifen/1111

And here's a quote from that study:

"About half of the participants (10,645) had ER-positive breast cancer. Among these women, adjuvant tamoxifen reduced the number of recurrences by half in the first five years after treatment began and by one-third in the next five years. No additional reduction in risk of recurrence was seen in the subsequent 5 years, but the risk remained lower in patients who took tamoxifen than in patients who had not taken it 15 years after treatment began—that is, reduction in risk seen in the first 10 years did not "wear off" over time. Even women whose tumors expressed only a small amount of ER had a substantially reduced risk of recurrence after taking tamoxifen."

And you can browse through lots of tests right here:

http://www.cancer.gov/clinicaltrials/results/type/breast.

Did you have an oncotype test? If so, that shows your personal risk of recurrence with, and without, tamoxifen.

BrooksideVT - thanks for posting those links - very informative. My MO did not recommend Tamoxifen for me. I had 4 tiny IDC tumors within my DCIS. He said there was not a lot of info on tumors so small (largest 3mm and smallest .8mm). For the most part, I am 'ok' with not taking it, but I do have the thoughts in the back of my mind that wonder if it is the right decision.

I keep shuffling my numbers around, but given my stats, 85% no recurrence w/out tamoxifen and 92-93% chance of no recurrence with it-this means there is a 92-93% chance tamoxifen will not be of any benefit to me-85% that I don't need it at all, 7-8% chance the cancer will come back even if I do take it, so that means a 7-8% chance tamoxifen will do anything good for me. And it's not like tamoxifen is a harmless substance, it's known side effects are pretty nasty. Put another way, my 15% chance of recurrence would be reduced to 7-8% with tamoxifen use (reduced by 1/2 as they say) but that's not very impressive when you consider the 92-93% chance it's won't change a thing for me, just expose me to additional health risks and discomfort.

I don't consider a drug with a 7-8% chance of working (for someone w my stats) to be effective and it's sure not safe. If this is the best we've got, I'll pass. From everything I've read the drugs we are offered, tamoxifen or aromatose therapies are not especially effective or safe. I am just so angry these are considered the standards of care for ER+ cancer and no one seems to be seriously working on better treatments. Like these are good enough. I don't think so-not by a long shot.

There are no guarantees with anything. Tamoxifen one of the few things proven to reduce / delay recurrence for many. So I take it, and it never entered my head that I wouldn't. That said, my SE have been minimal. Had they been debilitating, that would have been another dilemma that I have never faced, thankfully.

You know, these are very personal decisions.  All I can do is pass along what I have heard from breast cancer survivors.  I have written a breast cancer blog for 4 years since my own diagnosis.  I have heard from literally thousands of women.  All too many of them have been from women who have had recurrences who quit taking Tamoxifen or an Aromatase Inhibitor or refused to take those drugs at the beginning.  Most have been Stage 1 as they did not think they needed the drugs.

My mom was diagnosed at age 80 with Stage 1 breast cancer.  Was on an AI for 1.5 years and decided to quit taking it.  My sister and I were diagnosed Stage 3 - and we know we have to tough it out no matter what...

Well anastrozole was rough on me and I switched to exemestane it had different side effects. I said enough after 4 years. Some side effects aren't going away. The achy hip and ringing ear.

Hello...

I am new to this group, but felt compelled to reply to you. I had breast cancer in 2014. Stage 1, ER pos, No BRCA, No family history... I was 37. I had a lumpectomy and RAD for 6 weeks. The chances of me having cancer were "very very slim," but I did. The "board of med oncologists" wanted me to have chemo, although I was originally told it was unnecessary. I was also ordered Tamoxifen for 10 years.

I refused chemo and Tamoxifen

Fast forward to today. I have cancer again. The chances of my having cancer AGAIN are "Nearly impossible." I exercise 5 days a week, don't smoke, eat very healthy, am of ideal weight....In the eyes of the public I am of "perfect health." Should I have taken the tamoxifen? I do not have that answer. BUT..... Against my own will and wishes... I am going to this time... After my mastectomy

I don't blame you for not wanting to take it. I surely don't. I am not even 40 and am voluntarily handing myself to early menopause. YUCK

But, my cancer is ER pos....Again....99%.... This time, it's necessary....at least that is how I perceive it.

I hope this helps. I wish you the best on your journey. It is a challenging one.

Blessings,

Allison

movingsoccermom.... I agree!! The stats are that only 50 percent of women complete the recommended 5 years of antihormone treatment do to SE. That's just not good enough. That doesn't take into account the women who do have bad side effects but somehow continue with poor QOL. Why should we settle for this? We need to speak up so more research can be done to find something more tolerable!

Hi, I just found this forum. I am one year out tomorrow from my BMX. I had to have two other surgeries for natural reconstruction and have had chronic pain in my neck since the second surgery, which left me hunched over. Anyway, I have not started my Arimidex, despite being told to do so after my surgeries were over. The side effects of joint damage, osteoporosis, increased LDL cholesterol, etc. have me terrified to take it, so I have not. Is there any research out there that says if you get your ovaries out then you don't have to? My cancer was ER/PR by the way. Also, this might be a dumb question, because I have been in denial for a while, but what is an oncotype? Is it a blood test? What does it tell you? Thanks for any help.

Just throwing this out there for all the people deciding whether or not to take tamoxifen:

I had significant side effects the first 2 weeks, and some side effects the next 2 weeks. I almost quit tamoxifen, but my MO nurse encouraged me to hang in there, and she said the symptoms often normalize in a month or so. I didn't believe her, but she was right! Somewhere around the one month mark... no symptoms at all anymore! It was like night and day.

Anyway, just give your body a chance to adjust to the drug before making a final decision. Just my experience. Best wishes to everyone.