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All TopicsForum: DCIS (Ductal Carcinoma In Situ) → Topic: Should I be taking tamoxifen?

Topic: Should I be taking tamoxifen?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Aug 12, 2012 09:08PM

kathy8454 wrote:

 I was diagnosed with DCIS in two spots in left breast. They were both under 2 cm. and low grade.  I elected to have a bilateral mastectomy. I had 4 lymph nodes on each side removed and they were negative. I am ER and Pr positive. I also had reconstructive surgery done at the same time. Unfortunately my one breast is now 1 cup larger than the other and the plastic surgeon is puzzled and does not know what caused it but said he would redo the reconstruction in 4 months????  Anyway my real concern is should I be on tamoxifen or not? I got opinions from 3 different doctors. Two say no there is no reason to take it and the third doc said yes because its always possible just one cancer cell could have gotten into my bloodstream during surgery and the tamox would help cancer from developing somewhere else in my body. Does anyone have an opinion or information on this?

Thank you

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Aug 12, 2012 09:23PM Beesie wrote:

Kathy, who was the doctor who told you that you should take Tamoxifen? Was it your surgeon or was it an oncologist?

Tamoxifen usually is not recommended after a bilateral mastectomy for DCIS (or any other pre-invasive condition or pre-cancerous condition). This is because the risk of a recurrence or new BC after a bilateral MX for DCIS usually is only about 1% - 2% (assuming adequate surgical margins).  Tamoxifen can cut this risk by about 45%, but with such a low risk to being with, the benefit from Tamoxifen is at most 1% (a 50% reduction of a 2% risk). Overall Tamoxifen is a very safe drug but like all drugs it comes with the risk of side effects. Most of the side effects from Tamoxifen affect quality of life and do not present serious health risks however there are a number of small but very serious possible health-related side effects. Depending on one's age and overall health, the risk of serious side effects from Tamoxifen can range from about 1% to about 3%.

What this means is that the risk of serious side effects from Tamoxifen, even though very low, can range fom 1% - 3%, whereas the benefit from Tamoxifen in terms of the reduction in BC risk is only about 1% for someone who's had a BMX for DCIS. So by taking Tamoxifen you might actually be putting yourself at a greater overall health risk. This is why standard of care guidelines do not recommend Tamoxifen for those who've had a BMX for DCIS.  

Obviously for those who've had a lumpectomy and have a greater recurrence and/or new BC risk, or for those who have invasive cancer and have a risk of mets, the benefit from Tamoxifen in terms of risk reduction can be quite different. For example, if recurrence risk after a lumpectomy is 10%, Tamox. can cut this risk to 5.5%. This benefit from Tamoxifen is greater than the risk of taking Tamoxifen. This is why Tamoxifen is usually recommended to women who've had a lumpectomy for DCIS. Similarly, the fact that Tamoxifen can reduce the risk of mets is extremely significant to women who have invasive cancer, and that's why Tamox. is usually recommended to women who have invasive cancer, even if they've had a BMX (the risk of mets isn't affected or reduced by a BMX). The benefit vs. risk equation for Tamox. is completely different in these situations than it is for someone who's had a BMX for DCIS.

Hope that makes sense.  

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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Sep 2, 2012 09:22AM owlwatcher wrote:

thanks Beesie for everything you have written. I'm seeing onc in 2 weeks and I will be better informed because of you.

Surgery 4/7/2011 Mastectomy: Left, Right; Reconstruction (left): Silicone implant, Tissue expander placement; Reconstruction (right): Silicone implant, Tissue expander placement
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Sep 2, 2012 07:19PM jill47 wrote:

kathy8454: what type of doctor was that third doctor you mentioned, BS, MO, PS said cancer cells can spread during bmx surgery? I've never heard of that before, has anyone else? Is this a true statement?

I had a nsbmx and my tumor was 98%ER+ and 99% PR+ and MO said NO tamoxifen for me, btw I'm pre-menopausal so that is the only hormone therapy option for me.  My long term plan is close monitoring for the next 7 years by my MO and BS.

5/12 Grade 2 DCIS, 2+cm extensive comedo necrosis. 0/4 nodes. 98% ER+/99% PR+. LCIS/ALH presented after NSBMX 7/12. TH/BSO 8/13
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Sep 8, 2012 08:59PM cinnamonsmiles wrote:

I went through something similar after my BMX for DCIS. The breast surgeon wanted me on Tamoxifen but the head of the oncology dept. said no. Since DCIS is contained only within the milk ducts, in theory, with the mastectomy, all the cancer is gone so no need for Tamoxifen. I came here looking for advice as well. Beesie helped to realize it was not necessary. In fact, the oncologist told me that the possible side effects could only worsen some health problems I already had. The negatives outweighed what little benefit it would provide.

I am very much of the mind set that I would do all that I can to fight breast cancer. But I decided no to the Tamoxifen after a bmx with DCIS. 

Mastectomy without reconstruction was NOT the worst or only available option. I chose it and am happy with my decision.
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Sep 10, 2012 01:53PM tlew wrote:


 I was also in this same situation in June. I elected to do a mastectomy and was told that I didnt need tamoxifen since the risk of the side effects is greater than the benefits. I was very confused when my MO told me and I went to get another opinion from another MO and it was the same. I'm glad I dont have to take hormonal therapy, but either way having had BC we will always be walking on pins and needles.

Dx 4/2012, ILC, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+
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Oct 27, 2012 08:53PM Jennychen2012 wrote:


   I am new for this discussion board. I am newly diagnosised with DCIS and just finished left-mastectomy on Oct 10. My pathology report came back for no malignacy tissue found.( ER, PR has not tested) Pathologist thought stereocore biopsy have taken all bad tissue. My DCIS ( grade 3 5mm). I have an appointment on Nov 20 with Oncologist. I know I may need to take tamoxifen. I am so scared to take it because of side-effects of it. Does anybody can give me some advice?How this side-effects affect you life?

Many thanks

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Oct 29, 2012 04:29PM Jennychen2012 wrote:

Hello, tiew

   May I ask if you did double mastectomy or one side mastectomy? I just want to know why you MO didn't want you to take hormonal therapy. I am very struggling not to take Tamoxifen right now. I am not sure if my decision is going to right.

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Oct 29, 2012 07:51PM tlew wrote:

Hi Jenny, i did both. She didnt recommend tamox because my invasive was small and was removed during my biopsy. And i was left with very little dcis, i think .5mm. She said if i only removed 1 breast i would definetly need tamox. Or if i had a lumpectomy i would need to take it. Both my MO said i would benefit very little from tamox. But im sure if i wanted to take it, she would of prescribed it.

Dx 4/2012, ILC, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+
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Oct 30, 2012 10:11AM KrisLiz wrote:

Hi Jenny - I had DCIS and BMX in August, and I am taking Tamoxifen as recommended by my MO. I also had high-grade (3) cancer, and close margins (I'm currently finishing up radiation treatments), so that's why it was recommended for me and why I felt comfortable with that decision. I've been taking Tamoxifen since August, and I really haven't had any side effects aside from some mild night sweats. Everyone is different and responds differently to medications, so you have to be your own advocate and ask lots of questions with your MO. If you don't feel like you can have that kind of conversation with your MO, look for a different one. I hope your recovery is going well! 

Dx 7/18/2012, DCIS, Left, 6cm+, Stage 0, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 8/13/2012 Mastectomy: Left, Right; Lymph node removal: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 9/24/2012
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Oct 30, 2012 01:21PM Beesie wrote:

Jennychen, I had a single mastectomy too.  I opted out of Tamoxifen... and that was actually my oncologist's recommendation, much to my surprise.  A lot of women who have single MXs do take Tamoxifen, not so much to reduce recurrence risk but as a way to protect the remaining breast.  It's a question of how much benefit you will get from Tamoxifen, and how much benefit is enough to make it worthwhile for you to try Tamoxifen. The following might help you prepare some questions for your oncologist:

Tamoxifen provides 3 benefits:

1) Approx. a 45% reduction in the risk of a local (in the breast) recurrence.  For someone who had a MX for DCIS, unless you had particularly close margins, your local recurrence risk is likely only 1% - 2%.  So even if it's 2%, at most the benefit from Tamoxifen will be less than 1% (a 45% reduction of a 2% risk).  

2) A reduction in the risk of distant recurrence, i.e. mets. This is the most important benefit for those who have invasive cancer.  For someone who had a diagnosis of pure DCIS, there is no risk of mets so there is no benefit here from Tamoxifen. 

3) A reduction in the risk of developing a new primary BC, in either breast. Tamox. reduces BC risk by approx. 45%; if you take Tamox for the full 5 years, you will get this 45% risk reduction for about 10+ years. You might actually get some benefit for as long as 15 years, although likely at a declining rate of risk reduction in the later years. This is important to understand because often women believe that if they have a 20% chance of developing BC again during their lifetime, Tamox can reduce this risk to 11% (45% reduction of a 20% risk). Not so. How much Tamox actually reduces your risk depends on your risk and on your age. If you are 50 now, you risk developing breast cancer for about the next 40 years. Tamoxifen obviously won't provide a benefit for all that time. The rule of thumb that I've seen is that most women who've had BC have an annual risk to develop a new BC of about 0.5% per year. If your risk is 0.5% per year and you are 50 years old, this means that your remaining lifetime risk, till you are 90, is 20%. Taking Tamox. for 5 years will, in the best case, give you 15 years of risk reduction. Over the next 15 years, your risk is only 7.5% (0.5% per year X 15 years). A 45% risk reduction for the next 15 years would therefore reduce your risk from 7.5% to 4.1% (a 3.4% benefit). This will take your 20% lifetime risk down to 16.6%. That's a rough calculation - what you need to do is ask your oncologist what your annual risk is, based on your health and family health background. Then you can do your own calculation of your benefit from Tamoxifen, using your risk level and your age. 

That's the way that my MO explained Tamoxifen to me. I had a single MX, so my local recurrence benefit was at most 1%. I had a microinvasion of IDC along with my DCIS, so I do have a very small chance of mets, at most about 1%. This means that I'd get a small reduction in my risk of distant recurrence, at most 0.5%. As for protection of  my remaining breast, I was 49 when I was diagnosed so the calculation I did above for a 50 year-old would be about right for me. This means I'd get about a 3.4% reduction in my risk of a new primary BC from Tamoxifen. Looking at that amount of risk reduction, and considering the small risk of serious side effects (1% - 3%, depending on what other health problems you may already have) and the risk of quality of life side effects, I decided that taking Tamoxifen wasn't worth it to me.

All of that isn't to suggest that you might not want to take - or at least try - Tamoxifen. Your benefit might be greater, if you are higher risk, and you may be more willing than I to try Tamoxifen even if the benefit is lower.  But hopefully this explains why the benefits from Tamoxifen are not as significant for someone with DCIS as they are for someone with invasive cancer (who benefits from the reduction in the risk of mets), and the benefits are not as straightforward as you might think.  It's certainly worth a discussion with your oncologist. 

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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Feb 9, 2013 04:22PM ShaneOak wrote:

My oncologist said that in my case (DCIS, had BMX, no invasion found) the benefits of taking Tamoxifen did not out weighed the side effects.  He also stated that it would only cut my 1-2% risk down by .05%.  I felt okay with the 1-2% risk of recurrence.

Good luck!

Dx 12/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 12/16/2012 Mastectomy: Left, Right; Lymph node removal: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 4/23/2013 Reconstruction (left); Reconstruction (right)