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Topic: Do I really need to take Tamoxifen?

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

Posted on: Oct 5, 2013 03:30PM, edited Oct 5, 2013 10:32PM by blueice2013

blueice2013 wrote:

I just had a unilateral mastectomy due to recent diagnosis for breast cancer (DCIS grade 3 with less than 1mm micro-invasion, 5 lymph nodes removed and tested negative, 0/5, BRAC 1 and 2 gene tested negative, ER+,PR+. Stage 0-1a). The oncologist said I do not need chemo or radiation, but want me to take Tamoxifen for at least 5 years. Now I am very struggling on whether to take it or not. I really need other patients' help on deciding if I should take Tamoxifen or not. The only reason that I don't want to take the Tamoxifen is because I am scared about getting the possibility of having endometrial cancer, sometimes, my endometrial thickness is already a concern by the radiologist, thus I am desperately hoping to seek real-life experiences and advice from anyone here who has already gone through this.

My questions are: If you have taken Tamoxifen for years, have you suffered from any significant side effects (particularly uterine or endometrial cancer)? If you had opted not to take Tamoxifen years ago, do you still think it's a good decision or a decision you regret about now? Your views and advices are greatly appreciated!

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Posts 1 - 19 (19 total)

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Oct 5, 2013 06:45PM Annette47 wrote:

I've only been on it for about 6 months, but as we have a very similar diagnosis, I thought I'd share what my oncologist said, which is essentially that it would be up to me. He presented the recurrence risks, risks of a new primary, and also the risks of SE's from Tamoxifen and left it up to me, saying that either way would be a reasonable choice. What I decided was to try it, with the knowledge that if the SE's were too onerous, I could stop taking it. So far they haven't been - if anything I feel better (less PMS, more regular cycles) on the Tamoxifen than I did before. I've had a few mild hot flashes, some brittle nails (already improving) and recently some thinning hair (nothing noticeable to anyone else - hoping that resolves soon too).

As to how I came to that decision, I chose to take it for a couple reasons - first, I was 45 at diagnosis (46 now), so I figure I have many more years of risk ahead of me - both of recurrence and new primaries. Having had a lumpectomy, I still have plenty of breast tissue to worry about, and finally, I have no reason to think that I would be at any extra risk from serious Tami SE's.

I do have a friend who 8 years ago had a bilateral mastectomy for a small area of DCIS, chose not to take Tamoxifen and recently was diagnosed with a new primary (Stage III). While I know the odds of that happening were incredibly small, knowing that the Tamoxifen can help prevent something like that was comforting. If heaven forbid, I end up being diagnosed in the future, I'd feel better knowing that I've done everything possible. But that's me - I've seen other people on these boards who said they would be ok having not chosen the Tamoxifen in that scenario. Definitely something to consider though - how you would feel.

Best of luck with whatever you decide!

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage Ia, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Tamoxifen Surgery 12/18/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left) Radiation Therapy 01/21/2013 External
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Oct 5, 2013 10:59PM blueice2013 wrote:

Anette47, Very much appreciate your prompt replies and insights. My situation and even my age were indeed so similar to yours. Thanks for sharing your thoughts, great reasoning behind your decision, and information about your friend. As for what's happening to your friend who opted not to take Tamoxifen 8 years ago, it is very helpful, timely and useful information to me. More questions about your friend: Do you happen to know at which stage she was when she had mastectomy 8 years ago? Hasn't she closely monitored through Mammograms and ultrasound in all these years after her mastectomy (as I do not understand how she could be diagnosed at stage III all the sudden)? And what kinds of symptoms did she get with the recurrent cancer now -- such as spread outing to brain, chest, lung, etc.?

Dx 8/2013, DCIS, Stage 0, Grade 3, 0/5 nodes, ER+/PR+
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Oct 6, 2013 10:34AM peggy_j wrote:

Keep in mind, you can always take it for awhile and then stop. I had concerns before I started taking it and did a lot of research on Pub Med. Studies show the 5 years has the largest "benefit" but 2 years is better than none.

You may find it helpful to talk to your MO again about the risk of endometrial cancer. It's true that tamox increases the risk, but the absolute risk is still small (in all likelihood, smaller than the risk of a recurrence of breast cancer). My MO's approach to mitigate this risk is to carefully monitor any symptoms and do ultrasounds and biopsies as needed. In general, cancer doesn't pop up overnight. Often normal cells change into "hyperplasia" cells before becoming cancer, and sometimes it's the hyperplasia that's detected. One report I read said that women who are still having their periods are less likely to get endometrial cancer because we slough off cells each month--any hyperplasia cells are gone before they turn into cancer. (When I mentioned this theory to my MO, she said it's possible but it's not going to change her approach. Any symptom gets investigated ASAP). If you are concerned, you may also ask about other options. For example, some women choose to have hysterectomy to remove the uterus and remove any possibility of endometrial cancer. This may or may not be the route you'd like to take, but something to consider.

Dx 2/2011, IDC, <1cm, Stage Ia, Grade 1, 0/3 nodes, ER+/PR+, HER2-
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Oct 6, 2013 11:48AM blueice2013 wrote:

Peggy, The replies from you and also Annette47 earlier are so thoughtful and thus extremely helpful to me. Thank you so much. I think I have much better idea and more insights now to look at this matter to make my mind. One more follow-up question for you: What are the symptoms related to breast, uterus and ovary that we should investigate closely and immediately (by ultrasound and biopsy)? Thanks again.

Dx 8/2013, DCIS, Stage 0, Grade 3, 0/5 nodes, ER+/PR+
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Oct 6, 2013 01:34PM myers421 wrote:

Hi there I had a bmx in July and am currently in the tail end of recon. I too was recommended to take tamoxifin and I have declined. Every decision I have made up to the tamox decision has been made with 100% confidence that I was making the right choices from the bmx, to the radiation however I still struggle on my decision to decline the tamox. Glad to know I am not alone

Amy Dx 4/30/2013, DCIS, 4cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Surgery 07/11/2013 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction: Tissue expander placement, Breast implants (permanent) (Both) Surgery 10/29/2013 Reconstruction: Breast implants (permanent) (Both) Surgery 01/10/2014 Reconstruction: Breast implants (permanent) (Both) Surgery 08/08/2014 Reconstruction: Tissue expander placement, Latissimus Dorsi flap (Left)
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Oct 6, 2013 01:49PM aussieched wrote:

Hi Blueice,

regarding your comments above about Annette's friend being closely monitored. Even though you can be monitored, that doesn't always show up cancers growing until they are quite large.

I can speak from experience. I had regular mammograms, for at least 12 years prior to diagnosis, however when I was finally diagnosed, it had become invasive with positive sentinal node. When I saw the surgeon, he advised with the type I had, and the stage it was, that it had probably been growing there for at least 8 years, however the mammograms had not been picking it up. Therefore it is important to get a mammogram and also an ultrasound, so hopefully if one test misses it, the other may pick it up. I believe the stats are with mammograms that they are about 15- 20% incorrect..

regards Ched

Dx 5/11/2007, IDC, 2cm, Stage IIa, Grade 1, 1/30 nodes, ER+/PR+, HER2- Surgery 05/30/2007 Lumpectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left); Prophylactic Ovary Removal (Both)
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Oct 6, 2013 01:57PM Annette47 wrote:

Glad you found my post helpful!

As to my friend ... she was Stage 0 when she had her bilateral mastectomy. She was not followed with mammograms as there were no longer breasts to examine (she had a flap reconstruction and I've forgotten which kind, but either way, the new tissue is not considered breast tissue so is not checked by mammogram). She found her new cancer herself as it had formed a palpable lump on the outer edge of where the breast meets the chest, so most likely originated in the remnants that were left when they performed the mastectomies (it's impossible to remove every last cell of breast tissue). She had a PET scan following diagnosis, and thankfully the cancer seems to be confined to the (remaining) breast tissue and local lymph nodes. She is now undergoing chemo and tolerating it well, and will be moving on to radiation once she finishes chemo.

Peggy - very interesting about the sloughing off of hyperplasia theory! My onc said he would leave it up to my gyn to worry about endometrial cancer screening, and she said that because I am pre-menopaual she didn't think that any extra testing needs to be done in the absence of symptoms, which would be consistent with that theory.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage Ia, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Tamoxifen Surgery 12/18/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left) Radiation Therapy 01/21/2013 External
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Oct 6, 2013 10:10PM blueice2013 wrote:

Hi Amy, did you take the radiation after the bmx? My surgeon said I don't need radiation and no one will give me radiation given my mastectomy situation. Yes, I am also struggling on the tamox, and tend to take such strategy after getting so many good opinions from all of you kindly--take tamox w/ or w/o DIM for a while to see how it works, if not, I may give up taking DIM. Is anyone is taking DIM? How does DIM work for you?

Dx 8/2013, DCIS, Stage 0, Grade 3, 0/5 nodes, ER+/PR+
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Oct 6, 2013 10:34PM blueice2013 wrote:

Hi Annette and Ched,

From what you shared, I strongly feel the recurrence is harder to be detected at the very early stage than the initial cancer diagnosis, especially for the mastectomy patients. Doctors pay less attention on the same side and it is indeed not easy to find out the problem straightforward. If it has to be waited until the patient feels the abnormality, it usually won't be the early stage. How should we closely monitor ourselves? other than ultrasound and mammo, do we need to take PET scan, CT scan, bone scan....?

Dx 8/2013, DCIS, Stage 0, Grade 3, 0/5 nodes, ER+/PR+
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Oct 7, 2013 09:31AM GmaNiki wrote:


I have been taking Tamoxifen for 1 year now. I have been taking Prozac for 19 years. When I saw my oncologist on Friday, she told me that I cannot take the two together. It keeps the Tamoxifen from working and also causes major health problems down the road. OK, so why has no one told me this before, I see her every 4 months, I see my GP every 6 months, I see the breast surgeon every 6 months. I see my pharmasist every month.

I started looking into it on my own, and yes there is a major problem taking them together. So the MO said to stop the Prozac and start on Effexor immediately. When I asked her if that was the best way to handle it she said it would be fine. But then her office has not called in or given me a new prescription. I was trusting they would call it into my pharmacy. They didnt.

I called my GP this morning and made an appointment with him to talk about getting off the prozac on onto effexor. I am so stressed about this. No protection from the Tamoxifen for 1 year to me feels like a major letdown of the medical team I am counting on.

If any of you have taken an antidepressent you know they are not just interchangeable, you have to wean off one before starting another. I have just stopped the Tamoxifen because it would not be working anyway, and I know I cannot just stop taking the antidepressant. I am not sure what I want from anyone, but just need to vent. Really felt that I was past all the stress caused by cancer, only to find out I should be watching what the doctors are doing to me.

Thanks for listening.

Dx 2/22/2012, IDC, 2cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 03/29/2012 Mastectomy (Left); Reconstruction: TRAM flap (Left) Hormonal Therapy 05/10/2012 Arimidex
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Oct 10, 2013 08:36PM blueice2013 wrote:

Hi Annette,

So your friend who identified the new lump after 8 years by herself did not go through new surgery, but just do the chemo? The chemo is supposed to kill the cancer cells in the breast chest and lymph nodes? Thx.


Dx 8/2013, DCIS, Stage 0, Grade 3, 0/5 nodes, ER+/PR+
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Oct 10, 2013 09:36PM Annette47 wrote:

Yes, she did have surgery - I guess there was no way to remove the tumor and save the flap reconstruction (I'm not sure - I didn't question her as to whether a lumpectomy would have been an option or not, but I'm guessing not). She had the flap removed and recon with TE's done instead, and when she is done the chemo will need radiation as well.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage Ia, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Tamoxifen Surgery 12/18/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left) Radiation Therapy 01/21/2013 External
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Oct 10, 2013 09:52PM Beesie wrote:

blueice, I'm one who was in a similar position to you and I decided to pass on taking Tamoxifen. I had about 7+cm of multi-centric DCIS, high grade with comedo necrosis. I had one micro invasion (1mm) of IDC, so that pushed me up to Stage I. I had a single mastectomy. I had assumed that my oncologist would recommend that I take Tamoxifen, but he didn't. He said that it was up to me but he actually recommended against it, feeling that the risks and side effects from Tamoxifen were not worth the small reduction in risk that I'd get. After doing my own research, I ended up agreeing with him. That was almost 8 years ago now, and so far, so good.

What you need to really understand as you make this decision is how much benefit you will get from Tamoxifen. For me, with a MX, my risk of local recurrence was only 1%-2%; with approx. a 45% reduction in risk from Tamox that meant my benefit was at most 1%. Similarly with only a small micro invasion, my risk of mets was only about 1%, so here the benefit from Tamoxifen was negligible. The most significant benefit for me was protection of my remaining breast. My oncologist estimated that my risk to be diagnosed again with BC was about double the average for someone my age (I was 49 when I was diagnosed). The average 49 year old has an 11% remaining lifetime risk (to age 90) so that made my risk 22%. If I took Tamoxifen for 5 years (in those days it was only given for 5 years, not 10), it would reduce my risk by about 45% for those 5 years, and it would provide a carryover benefit for about another 3 or 4 years. But of my 22% risk, in fact only about 4% of that risk would be over the next 9 years - so that meant that my benefit from Tamoxifen would be a bit less than 2% - my lifetime risk would only go down to about 20% if I took Tamox for 5 years. And that's why I decided against Tamoxifen. I'm now 8 years older and while I still have double the risk of the average woman, because I'm older and have fewer years left in my 'remaining lifetime', my risk now is about 18%. At that risk level many women would choose to take Tamoxifen even for a small risk reduction, but personally I prefer living with the risk I know (breast cancer) than with a slightly lower breast cancer risk but also the additional (but small) other risks from Tamoxifen. However, if my BC risk had been higher, and therefore if my benefit fromTamoxifen had been greater, then I certainly would have taken Tamoxifen. So I'm not against Tamoxifen - it just didn't make sense for me.

That's how I made my decision. Considering that I'm pretty much out of the period where I would have benefited from Tamoxifen if I had taken it, and considering that I wasn't diagnosed during these years despite not taking Tamoxifen, for me it obviously was the right decision.

We all assess risk differently so you may look at the decision very differently than me. My only advice is to make sure you understand exactly what your benefit will be, in terms of BC risk reduction, vs. the new risks that you expose yourself to by taking Tamoxifen.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 10, 2013 10:17PM Beesie wrote:

One more comment. A local recurrence (a recurrence in the breast area) is actually much easier to find early if you've had a MX either with no reconstruction or with implant reconstruction. In both cases, the chest muscle is right up under the skin, and the skin surface is quite tight, so even the smallest nodule, either against the chest wall or against the skin, will be noticeable very quickly - there is no breast tissue covering the nodule and no breast tissue in which the nodule can hide.

Annette, if your friend initially had DCIS, then unless she had very close margins (which would certainly change things), her risk of recurrence after her MX was probably 1%-2%. Her risk of an invasive recurrence would have been 1/2 of that, in other words, probably no more than 1%. If she had taken Tamoxifen, it would have cut that risk by half, but half the risk would have remained. So she might well have been diagnosed with the recurrence anyway. And with at best a 1% risk reduction (invasive and DCIS recurrences combined), certainly her risks from taking the Tamoxifen would have been greater than the risk reduction. Your friend unfortunately fell on the wrong side of what normally would be extremely favourable odds. It's important to understand that because we can't (or shouldn't) make our decisions based on those rare worst case scenarios that happened to someone else. For most women who have pure DCIS, a bilateral mastectomy and good surgical margins, taking Tamoxifen actually puts their health at greater risk than not taking Tamoxifen.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 11, 2013 07:32AM bgail84 wrote:

Due to brittle bones from Aromasin my BS wants to switch me to Tamoxifen. I am undercertain given the risk of uterine cancer. Any thoughts anyone?

surgery -11/03/11. No chemo, oncotype score 12 with 8% recurrence rate. 25rads,5boosts. Dx 10/27/2011, IDC, 2cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2- Radiation Therapy 11/22/2011 External Hormonal Therapy 02/02/2012 Aromasin Hormonal Therapy 05/12/2014 Tamoxifen
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Oct 11, 2013 07:51AM voraciousreader wrote:

bgail...I would discuss your uterine cancer risk with your ob/ gyn. Often, a baseline transvaginal ultrasound is recommended before starting tamoxifen. Keep in mind if you do at some point develop uterine cancer, it is very treatable. If fact, in the landmark study, this past year, researchers found that for patients who took tamoxifen for 10 years, had very few uterine cancers and the benefit from taking the tamoxifen far outweighed the risk of uterine cancer. The study was important because it now gave patients more choices.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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Oct 11, 2013 09:16AM Annette47 wrote:

Beesie - it was actually a new primary, not a recurrence, and yes her odds of that happening were incredibly small. My point was more that the OP should consider how she would feel in that scenario. I know for me personally, if I were to be diagnosed with cancer again not having taken the Tamoxifen, I would always wonder if the Tamoxifen would have prevented it and felt guilty that I didn't do it. As I said in my original post to her, other people might not have the same response and that she should try to imagine how SHE would feel in that worst-case scenario as part of the decision making process.

The other thing to investigate are what her actual risks from the Tamoxifen are - my MO said that in the absence of other complicating factors, the risks of serious complications such as uterine cancer or blood clots is actually incredibly low - it's the quality of life SE's that are more likely to show up, and those will go away if/when you stop taking it. Now, if you have factors that raise your risk of serious complications then the decision becomes that much more complicated.

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage Ia, Grade 2, 0/3 nodes, ER+/PR+ Hormonal Therapy Tamoxifen Surgery 12/18/2012 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left) Radiation Therapy 01/21/2013 External
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Oct 11, 2013 09:28PM Beesie wrote:

Annette, I agree. It's important that blueice - and everyone making this decision - understand the benefits from Tamoxifen specifically as they relate to their own diagnosis and breast cancer risk, and also understand the risks from Tamoxifen, again as they specifically relate to themselves as individuals. The risks are not the same for all of us, because we all have a different health history. My understanding is that on average the risk of serious side effects is in the range of 1% - 3% but this will be higher or lower by individual.

For someone for whom the decision is not clear cut, this is a difficult decision, because there are certainly two sides to it, and there is no "right" or "wrong" decision. Breast cancer comes with risks and worst case scenarios, and Tamoxifen comes with risks and worst case scenarios. Some times the scale is clearly tipped to one side vs. the other, but other times the scale is quite balanced, and then you have to decide which risks and worst case scenarios you can live with the most easily.

To your point about how you would feel if the worst case scenario happened, I'm one who would look at it differently than you. If I was in your friend's shoes and I was diagnosed with a new invasive primary despite having only a 1% chance of that happening, I wouldn't second guess my decision to not take Tamoxifen at all. The way I would look at it, I'd figure that if this happened when there was only a 1% chance, then it probably would still have happened if there was only a 0.5% chance, if I'd cut my risk in half by taking Tamoxifen. And if I'd taken Tamoxifen and still had the new cancer develop, I would be even more upset. So there are certainly different ways that one might look at this, and that's why this needs to be a decision that we each make based on own factors and considerations.

Dx 9/15/05, DCIS-MI, 6cm+ Gr3 DCIS w/IDC microinvasion, Stage IA, 0/3 nodes, ER+/PR- “No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 12, 2013 02:58PM blueice2013 wrote:

Dear Annette and Beesie, hug hug both of you! Thanks so much for sharing your views on the tough question I raised, which is really a big choice ahead of me at the crossroad. Beesie, after I talked with my surgeon, several medical oncologists and googled by myself, I have the exact analysis result and thoughst as you expressed and calculated here (note: we do have very very similar situation, unilateral mx, DCIS, 1mm microinvasive, but you have PR-, mine is PR+, what's ur ER+ percentage?) I am inclined not to Tamox but took other alternative supplements instead to have a try although none of my MO agreed that. Unfortunately, I don't have a MO opposes Tamox as you have. But I still have that tendency of not taking it. But reading all the response messages, I tend to think that I may not be able to afford the risk of not trying Tamox for a while, if I get endometrial cancer, I am prepared to just have the doc take out the uterus to kill this problem. You are one of the very few people who backed my initial thought and decision before throwing out my original question. Few does not mean not right. So I got lost again :))) I have to take a bit more time to think it thoroughly. It is an indeed difficult choice in front of me, just as you said, for patients like me, the decision is not clear cut, rather it is a very very difficult decision. The doctors and the current scientific development also cannot judge what is "right" or "wrong" at this moment. We are kind of gambling here no matter what decision is finally made.

Dx 8/2013, DCIS, Stage 0, Grade 3, 0/5 nodes, ER+/PR+