Does anyone say no to Tamoxifen

tgtg

Tracy, 

Don't know whom you were asking, but I will answer.  Declined Tamoxifen (almost two years ago) and have been doing fine.  All check-ups and mammos say I am cancer-free.  And breast surgeon will do follow-ups every six months rather than annually after the 3rd milestone (no medical oncologist in my picture, since I declined the drugs). 

But am not just sitting around doing nothing to avoid recurrence.  (1) After reading the medical literature about the benefits of vitamin D and checking with my doctor, am judiciously (never between 11 am and 3 pm) getting the recommended 15 minutes dose of unprotected sun, three times a week.  When outside at other times, of course I use sunscreen! (2) Have also shed 15 lbs since diagnosis and brought my BMI below 25, and am still working on doing more, since at my age (73) fat is my estrogen source!  And of course keep working out as before b.c.

Nanka

I am on Tamoxifen but...My mother-in-law was dx with breast cancer in 1992 with positive lymph nodes. She had chemo but she didn't take Tamox then - was it even around? She was dx with a new breast cancer in 1997 and had a lumpectomy. The docs suggested Tamox and she declined. They thought she was crazy! In 2011, she was diagnosed with colon cancer (supposedly unrelated to the breast cancer). Fast forward to 2013, she was dx with a new breast cancer. She just finished chemo and they will be talking to her about AI's. She is not sure if she will decline again.

edwards750

Good grief Nanka - keep making the same decision and expecting a different result? What's the deal with her not taking Tamoxifen? How is that working out for her? None of us know for sure if we will have a recurrence but I know after the second round I would be doing something different. Taking Tamoxifen is no walk in the park but it is an additional insurance policy and who knows if she had been taking it maybe it wouldn't have come back. 

If that's my MIL I would have a serious talk about taking it. 

Diane 

Anonymous

Tamoxifen was still in clinical trials when my SIL started taking it around 1996.  She stopped when the trial she was in which gave her the Tamoxifen at no cost ended shortly after it won FDA approval and came on the market because she could not afford the cost which was hundreds of dollars a month back then.  She developed  a second breast cancer which was stage IV by the time it was diagnosed, and passed away about 6 months before I was diagnosed.  Cost may have been a factor in Nanka's MIL's decisions.  The price of Tamoxifen and some AI's which are now available as generics have fallen dramatically in recent years.  

Tamoxifen like every other breast cancer treatment has significant risks.  We each must balance those risks against the potential benefits for us.

I took Tamoxifen for 5 years, and did develop cataracts and another cancer, but I still believe that I made the best treatment decisions for me, and wouldn't change the decisions I made all those years ago.  

Nanka

I know, right? A little stubborn, to say the least. I have told her that this time around, there is no question, she has to take an AI. She didn't take tamoxifen the first time it was offered because she was afraid of blood clots (she has a history of them). However, the docs told her that she was already on blood thinners so all should be good. She still said no. Cancer drugs are free in Canada (since 2012 I think)...this time, there is no excuse...

jojo68

Nanka and Edwards...I disagree about having a 'serious' talk with the MIL.  I think she made a great decision!  Her recurrence was YEARS later!  There are many women who take Tamoxifen and get recurrances sooner than that!  Cancer and recurrances are a crap shoot and we each need to make the best decision for ourselves without having someone yapping in our ear!

Nanka

I agree jojo....she went with her gut feeling...so important when facing something like this since you know yourself better than anyone else. But, this last breast cancer dx, mammo showed 3 tumors in her breast but after the surgery, they found 8! Also, they couldn't check the lymph nodes this time around because she had none left to take out...imagine...The onc was therefore pretty insistant that my MIL take the AI's so that she can be around for at least 10 years....My MIL's response to this was that she didn't know if she even wanted to be around for 10 years with all of these health problems. She might just decide to let nature take it's course. We'll support any decisions she makes. She has been through the mill!

Iwannacookie

Just want to thank you all for this discussion.  I'm following it and finding it very fortifying in my own decision making.  My dx can't compare to Nanka's MIL, but having this choice is still a terrible burden.  

tgtg--very glad to hear that your choice of therapy is working for you.  I'm still relatively uninformed about the alternatives, but yours sounds very amenable to me.

brenda63

Hi, I had decided to stop taken Tamoxifen due to the SE. I was Dx in 08 and I took tomoxifen for 2 yrs. I started to have migraines, leg pains, depression and then I had two scares of endometriosis.  I had heavy bleeding every time I got my period.  It came back neg of endometriosis but was told that my uterus lining was thick, which was the cause of the heavy bleed. They gave me a DNC to help slow down the bleeding. They told me it was a SE from Tomoxifen and that is what prompted me to do the research. After learning a lot from that study, it made my decision much easier. I am 6yrs out but 5 yrs out from treatments. I am still cancer free. I still worry about getting again but I feel I made the right decision for me.

Nanka

Iwanna....I am on Tamoxifen and also have heavy bleeding...like HEAVY!...Had all the tests done and nothing showed. The docs say it's either Tamoxifen or just my natural progression into menopause. Could it also be SE of chemo? maybe...Other than that, I have no SE's with tamoxifen. It took me a while to take that first pill but now I am used to it. I just don't like taking any pills at all. I thought of going alternative and that is another option for you. But, when I realized how well Tamoxifen was working on my SIL (she is stage IV), I was glad I took it. It has 100% been working for her for about one year now. She is living life to the fullest and her current quality of life is better than mine! Lots to think about. Good luck with your decision...

Michelle

Iwannacookie

I finally had an appointment with an oncologist.  She confirmed what I knew was coming--that Tamoxifen is the only recommended therapy, and that it was totally up to me whether or not to take it. She was very non-judgmental and didn't put any pressure on me other than to suggest that I could just try it for a month and stop it if the SEs were too much for me.  I filled the prescription and was all gung-ho to start tomorrow, but now I'm chickening-out again.  

The oncologist said that the likelihood of cancer returning without any further treatment is extremely minuscule.  I was stage 1, grade 1, clean margins and node negative. It's hard to see much merit in taking it for 5 years.  I wish someone could help me make this decision--I hate this!

rosecal954

lwannacookie,  You might have seen what I wrote earlier on my decision with Tamoxifen.  I know it is a very hard decision and I agonized over it.  I finally made peace with myself and decided not to take. We have very similar diagnoses, tumor size, Grade 1. My oncologist sounds very similar to mine.  She didn't put any pressure on me, could see I had concerns over the side-effects and left it up to me. She too told me the chances of the cancer coming back was quite small.  You just have to go with your gut and can always change your mind and start taking it.  I wish you well and good health for many years to come.

Iwannacookie

Rosecal--Thank you for your response.   I guess I'll allow myself some more time to ponder.

I see you're in SoCal.  I'm in NorCal--Oakland to be exact.  

motheye

I haven't been on the site for three years since my girlfriend (44 yrs old) was diagnosed with stage I breast cancer.  Off the top of my head, I can't remember the exact diagnosis specifics, but we spent a lot of time quickly learning about breast cancer and treatments.  Thank you all for the advice I received here.  She ended up with two lumpectomies, radiation treatment, and chemo.  The came the push for Tamoxifen.  We were told the drug would reduce the chance of a recurrence by 40%.  Sounds great until I realized that the chance of BC returning without treatment was only 5%, with taking Tamoxifen it would be 3%.  So if 100 people with her diagnosis were to take Tamoxifen, only 2 would benefit.  And 100 out of 100 would have the side effects.  Keep in mind side effects are not just descriptions, they detrimentally affect your mental state and overall health,and can give you less of a positive attitude.  The positive attitude is why there is a very real placebo effect, if you feel positive about your actions in regard to your health, your prognosis will improve.

We decided we could make up the 2% gain from Tamoxifen by lifestyle change- diet and exercise.  She cut back on sugar in the diet and added more whole grains, proteins, and vegetables.  She goes to the gym for cross fit.  A kale smoothie every morning before running.  When she was diagnosed, she had just started running and had gotten up to three miles.  Last year she completed her first marathon and last month her first half ironman (1 mile swim, 56 mile bike, 13 mile run).  No recurrence of BC and holding out hope it never comes back, and she lives with a positive attitude.

This isn't meant to be a feel good story but it info on the tough and very scary decision she had to make.  Many people here have a more difficult decision.  Single data points like hers are completely meaningless, it does come down to real statistics based on individual cases as best they can be understood.  

My point is this- if you are looking to pass on taking Tamoxifen, will you consider lifestyle changes that will also benefit your prognosis?  Remember that improving your mental and physical health has plenty of side effects as well- all of them good.

Anonymous

actually, tamoxifen has been around for over 30 years.  My mom took it when diagnosed with ILC in 1986 (also lumpectomy, radiation, and ALND); she's a survivor of nearly 28 years without any recurrence. (also of colon cancer twice since then).  I took it for 5 years for  LCIS and now take evista for further prevention. For me, the very low risk of serious SEs from the tamox (<1% of blood clots or endometrial cancer) couldn't compete with my  high risk of invasive bc (over 36%); it's such a personal decision, one we each have to make for ourselves and be able to live with comfortably.

Anne

MyDiane

So many decisions regarding cancer are difficult and you can't undo a decision.  I choose the one that allows me to sleep peacefully at night.  If I get new information, I can change my mind.

After my breast cancer diagnosis, I consulted with a very well-known, well-respected oncologist at Dana-Farber who suggested Tamoxifen to me.  Knowing that for liability reasons, doctors will advise things that they might not necessarily encourage their family members to do but are 'standard of care', I asked him what he would suggest to his wife.  He said, "I'll do you one better.  I'll tell you what I would do for myself.  I'd take the Tamoxifen and if I had one bad day on it, I'd quit.  It won't make that big of a difference."  Sage?  Maybe not.  But honest.  And highly educated and informed.  And that's what we are all looking for.  Good information and honesty.  And honestly, you can't compare your outcome on the drug versus off the drug.  You have to choose one and live with the outcome.  So choose what allows you to sleep well at night.  You are intelligent.  Gather sound information, consult experts whom you feel you might be able to trust, and decide what is best for you.  I support you and your decision.

motheye

Diane,

Great post, what your doctor said is so important- 

"After my breast cancer diagnosis, I consulted with a very well-known, well-respected oncologist at Dana-Farber who suggested Tamoxifen to me. Knowing that for liability reasons, doctors will advise things that they might not necessarily encourage their family members to do but are 'standard of care', I asked him what he would suggest to his wife. He said, "I'll do you one better. I'll tell you what I would do for myself. I'd take the Tamoxifen and if I had one bad day on it, I'd quit. It won't make that big of a difference." 

You realized that doctor "must" follow standard wisdom.  But the doctor understands that with your diagnosis, he is saying Tamoxifen isn't going to make much of a difference in his long term outlook, so he would choose against it; if it would affect his quality of life.

We weren't particularly worried about the low risk of serious side effects of Tamoxifen, she in particular was worried about a negative change in lifestyle.  But if her diagnosis was more serious, she very likely would have take Tamoxifen.  Everyone's case is different, and needs to understand the risk/reward with a serious drug like Tamoxifen.

When she was diagnosed, we knew nothing about BC.  The posters on this site were very helpful so I thought I would give an update on her very tough decision after 3 years, and how she has fared since.  It's all good now, but the cancer could come back anytime.  We are just trying to live life with a positive attitude.

taranebraska

Hello.  I am needing to make a tough decision about stopping tamoxifen.  I'm almost done with 3 years on it.  I don't have noticeable SEs, except that apparently chemo in late 2010 killed all my muscle cells, so I'm really just a fluffy blob right now as nobody warned me how bad I'd disintegrate, and apparently with the blocking estrogen, I have a really nice case of vaginal atrophy.  Yay.  Intercourse is extremely painful, so my partner and I are having to see a therapist to figure out how to still be sexual without intercourse.  I have an appointment 10/7 with a pelvic pain specialist (second visit) to discuss what she and my oncologist discussed about getting me either topical estrogen, DHEA or, I think I have a third option, stopping tamoxifen.

I'm lost, and need more information.  Who's go any?

I haven't posted for a really long time.  I'm hoping my info and diagnosis shows up below.  My previews doesn't show I'm ER+,PR+and HER+, double mastectomy, no reconstruction, chemo ... previous history of Hodgkin disease with lots of radiation in 1997.

AlaskaAngel

tara,

Not sure how old you were at time of dx, but will give my history for comparison. Dx at age 51 and pre-to-perimenopausal at dx. Did chemo and rads and 1 year of tamoxifen at full dose and then 3/4 yr at half-dose, and then quit tamoxifen.(Never had Herceptin.)  After just 2 weeks of doing tamoxifen, sex was history for me and that never improved, even after quitting tamoxifen. It may not be that way for you, but that is what happened for me. Hope you have a better outcome.

A.A.

Iwannacookie

Well--today marks 2 weeks since I filled my prescription for Tamoxifen.  I took one pill and then stopped.  I believe my onc told me I had a 1-2 week window to decide whether or not to take it.  I don't really understand the reasoning behind this "deadline", but I guess the die is cast.  

farmerlucy

iwannacookie - I don't understand about the "window" either. I didn't take it for a year after dx - but then again my tumor was found post preventive mx. Who knows when it would have been found otherwise - certainly not before my next MRI - at least ten months later. My onc wanted me to take it initially and was glad I tried again, even a year late. I certainly don't think the die is cast. We all have to do the best we can. 

Iwannacookie

Farmerlucy--I was thinking that the "deadline" is odd.  If my cancer hadn't been discovered for another year, the protocol would probably be the same as it is now. So, I agree--I probably could still change my mind.  I'm curious to know what my Onc says.  I guess most of me was relieved to think the die had been cast.  I don't want to contemplate this anymore.

lallison

I ended up saying no.  I had LCIS and lumpectomy and tried tamoxifen but was miserable. As it turns out within a few months they found many polyps and masses on my (one remaining - other previously removed due to mass) ovary, inside my uterus and on the tube. So ended up having a full hysterectomy so I figure that removed any concern about hormones floating around and causing trouble.  My breast surgeon briefly mentioned trying something else now that I am "post" but I'm not rushing to try anything new right now.  I feel like my body has been through a lot in the last year, including new blood pressure issues that only appeared after both surgeries.  It might just be my mental/emotional state but I feel like I need to let my body stabilize and find the new normal for me.

p.s.  I am coming up on the third six month mark since BC surgery and have some swelling under my right arm (the side of the LCIS).  I'm sure it's nothing but good grief this anxiety every six months is a little exhausting.

Mouche

I am seriously thinking of stopping Tami also, I had an appoinment with my Onc this friday but she had to re-schedule for Nov 3th.

It's time for my 90 day re-fill and I will get it refilled and continue it until I see her on the 3rd of Nov, I simply cannot take the side effects anymore and I KNOW I can't do this for 5 years. The constant joint pain has become even more unbearable along with leg cramps waking me every night. I believe I'm done.

Manu14

Mouche - I was having horrible almost nightly leg and foot cramps too. My MO suggested calcium supplements which didn't make much of a difference. So I began searching for more information and found that magnesium levels can be affected by Tamoxifen which can result in muscle cramps. So, on my own, I started taking one 250 mg chelated magnesium supplement (Country Life) every evening. It has been two months now and I have not had another leg or foot cramp. Wish I had known what a difference it could make earlier. Maybe it could be something for you to consider.

sherridl

I am so sorry you are having a tough time.  I haven't been on this forum for some time, but I toughed out 4 years of Tamo, although I could never get over the 10 mg mark and that was also with severe side effects.  At 4 years taking 10 mg per day, I was diagnosed with bone mets.  4 months later another bone scan and more bone mets.  I had immediately stopped Tamo at the fist report.  Not bone mets after all.  I had a disorder that is the adult's version of rickets - called osteomalacia.  The specialist I was sent to was especially surprised when I told him that Tamo protected the bones.  Not so, he said - it is very damaging pre-menopausal.  

I think that everyone should have the right to deny or accept treatments that could affect their well-being.  Some women are fine on Tamo - others, like me, have almost every side effect in the book. My first (actually, my 2nd - I fired the first one who said I had the flu from Tamo) oncologist told me that the drug company only tested Tamo at 20 mg and they set the 5 year rule, so no one really knows how much will benefit you.  I suspect that is true of all the other drugs.  Of course, everyone has to decide on their own - no two cancers are alike and people react differently to the treatments, which of course are to ensure us that we stay NED.

400 mg of MagOx - that was my one savior.  Stopped the leg cramps.  I stopped taking this a while after stopping Tamo, but had to start again after my back was injured after brain surgery (not assoc. with cancer or BC).  

Cee67

I got my Tamoxifen a couple weeks ago and have not gotten the courage to try a tablet. I'm stage 4 so way above some of you, and I have no oncotype score (onc said they don't do that for stage 4). But I do have concerns about this medicine.

I've seen some ladies here say that they always get the rare/bad SE's from whatever meds they take. I am one of those. I began perimenopause about 8 years ago. I went through about 3 years of that with the most awful pain in my hips that hubby had to cut up pieces of memory foam for my hips in bed. At other times I could barely move due to severe joint pain all over. I've never had hot flashes but I would wake up in damp sheets feeling sweaty, that is, *when* I could sleep.

Then it all went away and I stabilized, but I must be in another hormonal decline because the last couple of months I'm aching again (though not to the degree of before), and I sweat all the time for no reason. Here in SoCal we're having a humid year which I'm not used to so that could be exacerbating things.

I wonder if Tamox would make my symptoms worse, since I seem to be having the kinds of symptoms it causes already. I've wondered if it might make them better.

But stage 4 or no, I don't want a deadly form of uterine cancer anymore than anyone else does. That SE scares me, especially since I don't do GYN exams. I told my onc this - he prescribed it anyway and said I could skip the pelvic and go right to ultrasound. Well that's nice Doc, but what happens when the US comes back abnormal? Then I have to have an actual exam and (painful) uterine biopsy/D&C etc etc.

My BFF is about to go visit her aunt, who is currently in hospice dying because a few weeks ago during her hysterectomy they burst a tumor. Within a few weeks cancer was everywhere and now she is dying painfully. This is supposedly a "rare" occurrence.

My onc is always telling me how most SE's don't happen but to a very few which is only comforting as long as you aren't the very few.

I've just read that Tamox is hard on the liver? 

And the eye problems it causes are worrying as I am legally blind and have limited vision in one eye only. Naturally I don't want to jeopardize the sight I have. 

Back when my onc thought I would have chemo he had to remove Taxanes from the list of things I can take due to possible neuropathy issues with the eyes...yet he still wrote out Tamox for me. Seems contrary.

So there the bottle sits as I think on it. But I have had this cancer a long time, and I am positive it's been stage 4 for ages given my back has ached for a decade right where the cancer is. I have read that by the time cancer is found it can have been with you for 10, 15, and even 20 years. I *know* mine has been in my back for 10-12 years, so I technically have been living with stage 4 disease, with no Tamox or any other treatment, and I've survived with a good QoL.

I am using an alternative treatment method at the moment, and still deciding on whether to try Tamoxifen. Thanks to everyone who has posted so openly about their experiences with it.

Meow13

What about trying an AI like anastrozole or exemestane? I think the SE with achy joints or arthitisis is bad but not permanent. At least I hope my aches aren't permanent. They can check your bone density and make sure it isn't going down on the drugs.

Cee67

Meow13 I love your kitties! I have 6 - 5 all black and a gray tabby kitten now

I've wondered about those AI's but I guess since I still get a period I can't try them. I need to find clinical trials. I don't know how I can get in to one, but there has got to be better drugs out there like that BZA drug the mods posted a link about a page or two back.

There must be a way to treat cancer without such bad SE's!

kayezzy66

Mouche,i am on aromasin for 5 years.I came off of the pills last week,because i hurt so bad.I go see my onconlogy Dr. the end of this month..Will probably put me on tamoxifen..Ive also been on arimidex.I also have leg cramps at nite,and i drink some tonic water.And it goes away..