node negative stage I breast cancer question

swimjames

I have just had a lumpectomy and finished 20 sessions of radiation and my oncologist told me to start Tamoxifen 20 mg per day for 5 years. Standard regimen as I see from all the articles. I am very wary of the effects of the meds on the uterine lining as I had 2 myomectomies to remove fibroids almost 5 years ago and 17 years ago. I am also understanding that taking Tamoxifen will only improve my odds of not getting recurrent cancer by 5%?? Please see below and please let me know which links to look at to get my answers about the benefits of the meds so I can make an educated decision about my next step.

Is there a study for lymph node negative postmenopausal women who have estrogen/progesterone receptive stage 1 grade 1 breast cancer for various time periods who used Tamoxifen for 5 years?

Any literature talking about Tamoxifen's improvement in Survival rates for Lymph node NEGATIVE patients after use of 10 years? The absolute improvement percentage according to a link from Komen (see below) says the improvement rate is 5% for Lymph node negativewomen for a 10 year period after taking Tamoxifen for 5 years. A link from NIH seems to have higher improvement numbers for 10 years of taking Tamoxifen for the first 5 years (50% improvement in first 5 years followed by 33% in the next 5 years) for women with ER positive breast cancer. That would translate to a rate that is much higher than an overall improvement rate of 5% over 10 years. So which study is more pertinent? Which numbers are the ones I should look at when making a decision? I would assume that the study Komen performed using 33,000 women (updated 12/2017) is more relevant as NIH's study only had 10,645 women?

Tamoxifen reduces the risk of recurrence much more than it reduces the risk of mortality because most recurrences that are found early can be successfully treated. The table on the Komen site shows overall survival for different groups (all the women alive (have not died from any cause of death) at the end of the time period) and breast cancer survival for the overall group of women (all the women who have not died from breast cancer specifically).

If you're specifically interested in node-negative, ER-positive breast cancer, the data in the table on the Komen site show that women with ER-positive, node-negative early breast cancer who took tamoxifen for 5 years had a 5% improvement in overall survival 10 years after treatment compared to women with ER-positive, node-negative early breast cancer who did not take tamoxifen. 82% of the women who took tamoxifen were alive 10 years after treatment compared to 77% who did not take tamoxifen. The 5% improvement may seem small, but it was statistically significant. Survival was improved for both premenopausal women and postmenopausal women. The meta-analyses didn't break down the data by grade.

NIH view: https://www.cancer.gov/types/breast/research/tamoxifen-long-lasting-benefit

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.

https://www.ncbi.nlm.nih.gov/pubmed/21802721

Komen "early stage" breast cancer view:

https://ww5.komen.org/BreastCancer/Table41Adjuvanttamoxifenandoverallsurvivalinestrogenreceptorpositivebreastcancer.html

• 10-Year Overall Survival‡ Percent SurvivingAbsolute Improvement
  in Survival
  with Tamoxifen Tamoxifen No TamoxifenTamoxifen use for 5 yearsLymph node-negative82%77%5%†Lymph node-positive64%52%12%† 15-Year Overall Survival‡ Percent SurvivingAbsolute Improvement
  in Survival
  with Tamoxifen Tamoxifen No TamoxifenTamoxifen use for 5 yearsOverall64%56%8%†* Combined data from 20 randomized clinical trials that together included 21,457 women† Statistically significant improvement‡ Combined data from 44 randomized clinical trials that together included 33,209 women
  References
  1. Early Breast Cancer Trialists' Collaborative Group. Effects of chemotherapy and hormonal therapy for early breast cancer on recurrence and 15-year survival: an overview of the randomized trials. Lancet. 365(9472):1687-717, 2005.
  2. Davies C, Godwin J, Gray R, et al. for the Early Breast Cancer Trialists' Collaborative Group (EBCTCG). Relevance of breast cancer hormone receptors and other factors to the efficacy of adjuvant tamoxifen: patient-level meta-analysis of randomised trials. Lancet. 378(9793):771-84, 2011.

Jons_girl

hi swimjames:

I didn't see listed yr dx so am not positive we have the same br cancer. I didn't read your entire post. But I had a tumor that was 3-4 mm caught it miraculously because I don't do self exams (I do now tho!). Anyway, my tumor was stage 1A. Grade 1.

My surgeon suggested I taketamoxifen for 5 yrs. I said no I didn't want to take it. Was told to wait til after surgery and we'd talk about it again. After surgery when margins were clear and nodes negative I told her I didn't want to take it.

My med oncologist I also told I wasn't finding any studies really that were done with women like myself....small tumor...low proliferation rate and node and margins clear.

I agree with what you say above. The studies don't show a huge recurrence rate if you don't take the med. it was very low.

I told him....why would I do radiation or take tamoxifen? I chose not to do radiation or tamoxifen. I thought if it were to come back I'd want options other than a mastectomy.

After talking to him he said that he understood what I was saying. And if I didn't choose to do either option he'd support me in that decision. As long as I go back to see him regularly. I told him I would. I'm seeing him every 6 mo right now. And planning to have ultrasounds every six months. MRI maybe yearly. Just as precaution. The key if it comes back is to catch it early in my mind.

My surgeon was ok with my decision as well.

I am trying to exercise daily as well. I was told 30 min a day of exercise was as good as taking tamoxifen. I don't know if that's true but a medical professional told me that.

I eat a plant based diet. Not sure if that will help me but that's what I do

Both my onco med dr and surgeon believe all is going to be fine. Very low chance it will return.

dtad

Swimjames.....I’m much older th an you but I’m also stage one hormone positive, no lymph involvement. I also refused ant hotrmone therapy. My docs did not approve. MO was actually mad about it, but my BS at least understood. I lost 30 pounds and try to exercise daily. This has been shown tho lower recurrence rates by 40 percent. I’m 3 years out. So far so good. I don’t think you will see any studies on those of us who choice not to take anti hormones because we are not followed or tracked. Good luck and keep us posted

Georgia1

Swimjames, a couple of things to keep in mind that might help. The higher your ER+ percentage the more Tamoxifen will benefit you. And there is also good science to prove that you can get a lifetime benefit from only two years on Tamoxifen. So since I'm at ER+ 95 percent, and know I can just stop taking the pills anytime I want, I started in January with the theory of reassessing at regular intervals. I'm also stage 1, lymph node negative.

Doing the math alone is hard, as you've discovered, but we do know there are some benefits for all, with some personalized risks too of course. Hope you can find a good MO to talk over the issues related to your personal health issues.

Hopeful82014

Swimjames - maybe I'm missing something but, offhand, since you're postmenopausal it seems as though an AI would be more beneficial and present fewer concerns re: uterine thickening. Is there some reason your MO wants you to use tamoxifen rather than an AI?

Also, as Georgia1 points out above, even a couple years of endocrine therapy has a substantial effect on risk of recurrence. Finally, as she said, you can quit at any time.

Jons_girl

I was told by my MO that my recurrence rates were low for me. He said if I took tamoxifen it wouldn't lower my recurrence rate much at all. (And I'd have to deal with potential side affects.) It was not a bigdifference and I think my tumor ER+ was like 97% as I recall.

Each of us has to choose tho. Everyone has different numbers and stage and grade of tumor so what works for one may not wk for another.

Sounds like you've really been looking at research and that's great swimjames!

Have a great evening

swimjames

My ER+ was 90%, thank you for bringing that up. I feel always researching is a good idea as things at the forefront of medicine do tend to change overnight and no one advocated for you like you do in the end. Each of our MOs has hundreds of patients to look after, we only have one, ourselves. For example I learned below yesterday from reading an interesting article: "women should stick with one facility for their scans. Each machine has its own idiosyncrasies, so getting scanned by the same one from year to year makes it easier to compare results accurately."

https://www.curetoday.com/publications/cure/2018/womens-cancers-2018/its-complicated-maintaining-healthy-bones-against-all-odds

Jons_girl

I completely agree! I even have the same tech do my ultrasounds. Even techs do exams differently. Good point!

Mary222

Am I reading this data correctly? I looked at the trial on the Komen page and it says 5% improved overall survival rate with tamoxifen. But when I enter data into Predict 2.0 or lifemath calculators, it says my entire rate of recurrence is 7% and tamoxifen only reduces that by a couple percentage points. I'm 52, cancer was 9.6 mm, grade 2, ER/PR+, HER -, no node involvement and trying to decide if tamox is worth it or not. Is it that this data includes HER+ data, or that 'early' is more than stage 0 and 1?

swimjames

12% according to this:

https://www.cancer.gov/types/breast/hp/breast-treatment-pdq#link/_1028_toc.

The answer I got from Komen about the 5% is:

I received your messages from our Komen Helpline staff. Thank you for reaching out to Susan G. Komen with your questions.

These aren't "Komen" studies, our research tables present findings from many studies. For more information about tamoxifen, please see here- https://ww5.komen.org/BreastCancer/Tamoxifen.html

The content within the About Breast Cancer section reflects the current body of scientific evidence on a topic. We look at the consistency within research from large studies (done with people) reported in reputable, peer-reviewed journals. The date on the bottom of each page was the date that entire page was reviewed and/or updated. We work with Harvard Medical School on our content.

Anyway, back to your question. The NCI is talking about the 2011 Early Breast Cancer Trialists' Collaborative Group meta-analyses and we describe both the 2011 and the 2005 meta-analysis (which showed different types of data that weren't included in the 2011 update).

All the data relate only to women who took tamoxifen for 5 years.

The NCI write-up mentions reduction in recurrence, not survival, so that's why the numbers are different. Tamoxifen reduces the risk of recurrence much more than it reduces the risk of mortality because most recurrences that are found early can be successfully treated. The table on the Komen site shows overall survival for different groups (all the women alive (have not died from any cause of death) at the end of the time period) and breast cancer survival for the overall group of women (all the women who have not died from breast cancer specifically).

If you're specifically interested in node-negative, ER-positive breast cancer, the data in the table on the Komen site show that women with ER-positive, node-negative early breast cancer who took tamoxifen for 5 years had a 5% improvement in overall survival 10 years after treatment compared to women with ER-positive, node-negative early breast cancer who did not take tamoxifen. 82% of the women who took tamoxifen were alive 10 years after treatment compared to 77% who did not take tamoxifen. The 5% improvement may seem small, but it was statistically significant. Survival was improved for both premenopausal women and postmenopausal women. The meta-analyses didn't break down the data by grade.

I hope this helps. Let me know if you have any further questions. In addition, we always recommend you speak with your doctor to make treatment decisions that are best for you. It's always a good idea to get a second opinion as well.

Thanks again for reaching out and contacting Komen.

Regards,

Erica

Erica Kuhn, MPH

Manager, Education Publications

P: 972-855-4324 | F: 972-855-4302

5005 LBJ Freeway, Suite 526 | Dallas, TX 75244

1-877 GO KOMEN | www.komen.org

Our Bold Goal: Reduce current number of breast cancer deaths by 50% in the U.S. by 2026.

From what I understand from the Komen source, is that it is a 5% (which is statistically significant). Oncologists and doctors in general will not discuss percentage improvement with patients because it does sound like it is not worth it, but it is worth it if you are in that 5%. We will never know how applicable that sample/group of women who took Tamoxifen for this trial were to you or me, and what other factors influenced their health or survival rates, but we do know for sure that getting a side effect of uterine cancer from tamoxifen is a smaller probability than being helped to not get breast cancer again, so that is why oncologists prescribe it. If an oncologist were to tell an average patient that a medicine with undesirable side effects will only help them not get sick again by 5%, most would not take it.

The other things one should do besides medicines, is to always have a fruit and vegetable rich diet, from all my research, and little to no meats.. Lots of beans, and very colorful fruits, berries and veggies.

Komen is very good at answering questions by e mail, so if you want to get a more detailed answer, please contact them.

In these women, the 15-year absolute reduction associated with 5 years of use was 12 percent for recurrence and 9 percent for mortality. This information can be found at https://www.cancer.gov/types/breast/hp/breast-treatment-pdq#link/_1028_toc

from NIH, 2011: NIH view: https://www.cancer.gov/types/breast/research/tamoxifen-long-lasting-benefit
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.

swimjames

Here is one answer from NIH's National Cancer Institute:

Subject

Long-Term Data Confirm Tamoxifen's Long-Lasting Benefit

Response By Email (NCI Agent) (03/20/2018 01:05 PM) Thank you for your e-mail to the National Cancer Institute (NCI) asking for recent studies of postmenopausal women who have lymph node-negative, estrogen/progesterone (ER/PR) receptor-positive, stage I, grade 1, breast cancer and used tamoxifen for 5 and 10 years. You also asked for clarification of the data posted on the NCI and Susan G. Komen websites from studies on this topic. We can offer information you may find helpful. It is important to discuss this information with your health care provider before making any decisions about a specific situation. There are many studies that have examined the use of tamoxifen for 5 years in postmenopausal women, with early-stage, lymph node-negative, breast cancer. NCI's "Breast Cancer Treatment (PDQ®)–Health Professional Version" cites 'seminal' studies on the benefit of tamoxifen in early-breast cancer. The guiding assessment factor for use of hormone therapy whether tamoxifen or an aromatase inhibitor is ER/PR status not lymph node status. For example, the Early Breast Cancer Trialists' Collaborative Group (EBCTCG) has followed women who took 5 years of tamoxifen and various systemic adjuvant therapies for a 15-year period. An analysis published in 2005 included information on 80,273 women in 71 trials of adjuvant tamoxifen. In this analysis, the benefit of tamoxifen was found to be limited to women with hormone receptor–positive or hormone receptor–unknown breast tumors. In these women, the 15-year absolute reduction associated with 5 years of use was 12 percent for recurrence and 9 percent for mortality. This information can be found at https://www.cancer.gov/types/breast/hp/breast-treatment-pdq#link/_1028_toc. The Komen chart you mentioned, combines the results of findings from the EBCTCG 2005 analysis discussed above, with a meta-analysis from 2011 from the same research group. The EBCTCG 2011 analysis looked at 20 trials in early breast cancer comparing 5 years of tamoxifen vs no tamoxifen. This extended follow-up examined the long-term effects on breast cancer mortality and other mortality in women with only weakly hormone-receptor positive breast cancer. The researchers concluded that 5 years of adjuvant tamoxifen safely reduces 15-year risks of breast cancer recurrence and death. ER status was the only recorded factor predictive of the proportional reductions. The findings are discussed in the full-text article at http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60993-8/fulltext. You also noted the date on the Komen chart was "Updated 12/06/17." This just means the web page was updated. It does not mean the trial is recent or the data was reanalyzed. At the bottom of the page, both the EBCTCG 2005 and EBCTCG 2011 studies are referenced. It is important to note the NCI article in question "Long-Term Data from 20 Trials Confirm Tamoxifen's Long-Lasting Benefit" only discusses the EBCTCG 2011 analysis. The results of the EBCTCG 2005 are not combined with results of EBCTCG 2011 as the Komen chart did. The length of tamoxifen use (5 years vs 10 years) has also been investigated. Long-term follow-up of the Adjuvant Tamoxifen Longer Against Shorter (ATLAS [NCT00003016]) trial demonstrated that 10 years of tamoxifen therapy was superior to 5 years of tamoxifen therapy. Between 1996 and 2005, 12,894 women with early breast cancer were randomly assigned to receive 10 years or 5 years of tamoxifen therapy. Study results revealed that 10 years of tamoxifen reduced the risk of breast cancer recurrence (617 recurrences for 10 years of tamoxifen vs. 711 recurrences for 5 years of tamoxifen; P = .002), reduced breast-cancer mortality (331 deaths for 10 years of tamoxifen vs. 397 deaths for 5 years of tamoxifen; P = .01), and reduced overall mortality (639 deaths for 10 years of tamoxifen vs. 722 deaths for 5 years of tamoxifen; P = .01). This information can be found at https://www.cancer.gov/types/breast/hp/breast-treatment-pdq#link/_1028_toc. You may also find the following resources helpful: --Cancer.net Hormonal Therapy for Early-Stage Hormone-Positive Breast Cancer https://www.cancer.net/research-and-advocacy/asco-care-and-treatment-recommendations-patients/hormonal-therapy-early-stage-hormone-receptor-positive-breast-cancer --Extended Adjuvant Therapy Beneficial for Some Women with Breast Cancer https://www.cancer.gov/news-events/cancer-currents-blog/2016/adjuvant-aromatase-breast?cid=eb_govdel Please be aware that the information provided does not constitute medical or legal advice. Thank you for writing. National Cancer Institute Staff Customer By CSS Email (03/15/2018 11:05 AM) The study you have here on the link I provided is from 2011/ The Lancett: Source The Lancet, August 27, 2011 (see the journal abstract). https://ww5.komen.org/BreastCancer/Table41Adjuvanttamoxifenandoverallsurvivalinestrogenreceptorpositivebreastcancer.html

swimjames

Tamoxifen

Tamoxifen has been shown to be of benefit to women with hormone receptor–positive breast cancer.

Evidence (tamoxifen for hormone receptor–positive early breast cancer):

1. The EBCTCG performed a meta-analysis of systemic treatment of early breast cancer by hormone, cytotoxic, or biologic therapy methods in randomized trials involving 144,939 women with stage I or stage II breast cancer. An analysis published in 2005 included information on 80,273 women in 71 trials of adjuvant tamoxifen.[83][Level of evidence: 1iiA]
   • In this analysis, the benefit of tamoxifen was found to be restricted to women with hormone receptor–positive or hormone receptor–unknown breast tumors. In these women, the 15-year absolute reduction associated with 5 years of use was 12% for recurrence and 9% for mortality.
   • Allocation to approximately 5 years of adjuvant tamoxifen reduces the annual breast cancer death rate by 31%, largely irrespective of the use of chemotherapy and of age (<50 years, 50–69 years, ≥70 years), PR status, or other tumor characteristics.
   • The meta-analysis also confirmed the benefit of adjuvant tamoxifen in hormone receptor–positive premenopausal women. Women younger than 50 years obtained a degree of benefit from 5 years of tamoxifen similar to that obtained by older women. In addition, the proportional reductions in both recurrence and mortality associated with tamoxifen use were similar in women with either node-negative or node-positive breast cancer, but the absolute improvement in survival at 10 years was greater in the node-positive breast cancer group (5.3% vs. 12.5% with 5 years of use).
2. Similar results were found in the IBCSG-13-93 trial.[129] Of 1,246 women with stage II disease, only the women with hormone receptor–positive disease benefited from tamoxifen.

The optimal duration of tamoxifen use has been addressed by the EBCTCG meta-analysis and by several large randomized trials.[83,130-133] Ten years of tamoxifen therapy has been shown to be superior to shorter durations of tamoxifen therapy.

gigibee

great information here, thanks to all for sharing.

I am on tam over 1 month, with no major SE's thus far, but like to be informed of the actual benefits and the stats as you stated them here.

swimjames

I think another discussion point is how to test for any of the possible tamoxifen side effects, and also how to continue testing breasts for recurring breast cancer, especially for dense breasts where 3D mamography shows nothing. In my case only ultrasounds show anything at all. I have heard about contrast mamograms but did not pursue that route. If anyone knows of more detailed info on contrast mamograms for dense breasts? My understanding is that most women have dense breasts, which makes mamography useless. When would MRI be the best option?

gigibee

swimjames, I have dense breasts and my cancer was found in a standard mammogram. then a diagnostic mammogram, ultrasound, and ultimately biopsy. I still have never had an MRI or a 3d mammogram. I am having a 6 month post lumpectomy mamma on my right breast in May. That is all and I am concerned because I feel like I should have more extensive screenings. I asked about my left breast and they said "oh you will just get your annual order from your ob gyn for that" uh really? because I came here to this acclaimed NCCN cancer center to get the best care. I just don't understand the path forward with all of this. It seems like their concensus is to be reactive and not proactive.

Jons_girl

gigibee completely agree with you! Swimjames sounds like you had a very similar experience to mine. I have what they classify as level 4 or D (new density classification would be level D old classification was level 4) which is classified as 'extremely dense breast tissue'. I got a copy of the CD with the images and I couldnt believe how dense my tissue is/was! White everywhere!

I can't remember if it was gigibee or swimjames that said you had dense tissue and your cancer was seen on mammo. What level of breast density do you have? I am curious about that. It is interesting to me because I have recently been hearing about women who's cancer was seen on mammo and have dense breast tissue...but had been told previously that if your breasts are dense (40% of women have dense tissue) your cancer can't be seen on a mammo. Yesterday someone pointed out to me that that isn't true. She said her cancer had calcifications. So I wonder if that is what they see on the mammo is the calcifications? and all other types can't be seen? I am learning more about dense tissue. Don't claim to be a expert for sure on any of that. Cancer info is changing so much it seems. My onco surgeon told me they are learning more stuff all the time, some they don't know yet, and some they are finding is stuff they had wrong. That is so reassuring. lol.

gigibee I think we just have to be very very proactive and push for other diagnostics when we feel they are being to laid back about rechecking.

I have my 1 yr recheck in June and I am strongly considering having a MRI. I have seen stories on this website where womens cancer wasn't caught on mammo or ultrasound! That is a little scary to me. But I know not all of us have the same experiences so I try to look at it from that point of view. My experience is still pretty fresh in my mind, maybe someday I will be more relaxed about my rechecks. But right now I push for what I think I need. My onco docs think I will be fine. But because I chose to not have radiation or any med therapy I am very much wanting to keep a close eye on it. I caught mine very very early....and it was low prolif rate.

My cancer was caught very obviously on ultrasound.....mammo saw nothing at all. So the question I have in my head is....is ultrasound good enough for the rest of my life or do I need to also be doing mri each year?

I too have the same frustrations you both mentioned....not sure the answers but just to stand up for yourself. That is one thing we can do.

swimjames

I wonder, since this site is monitored by a breast surgeon, is anyone whose specialty is breast cancer reviewing all these entries by us?

gigibee

Jon’s_girl. I don’t the exact degree of my density , I feel like the reports said the patient has heterogenous dense tissue or something like that. My surgeon told me 50% of people under 50 have dense tissue so it is not really rare. Prior to my diagnosis I had 3 years of standard mammograms and no findings. Not even calcifications , so this came out of nowhere. I did read in Dr Susan Loves Breast Book that tamoxifen reduces density almost immediately so I am hoping that will also aid with future diagnostics.

swimjames

I am almost through reading Dr. Loves book, so I guess I didn't get to the density/tamoxifen part ~ that would be a good thing for future breast exams then! I know most women have dense breasts regardless of their age. I know many postmenopausal women who still have dense breasts way after menopause..

swimjames

1. SABP P-1 (1998)²
Tamoxifen is a selective estrogen receptor modulator (SERM) that was first approved by the FDA in 1977 for use in women with breast cancer. Although tamoxifen's benefit had been well-established by the 1990s, the role of the medication for breast cancer prevention had not yet been fully studied.

To further explore the primary prevention effects of tamoxifen, more than 13,000 women aged 35 years and older were randomly assigned in a double-blind manner to receive placebo or tamoxifen 20 mg/day for 5 years. To be eligible for the trial, participants had to have been at increased risk for breast cancer due to age 60 years or older or between the ages of 35 and 59 years with a 5-year predicted risk for breast cancer of at least 1.66% or had a history of lobular carcinoma in situ. The primary endpoint was the incidence of invasive breast cancer.

Study results showed there was a significant 49% reduction in the overall risk of invasive breast cancer in the tamoxifen group as compared to placebo (89 vs 175 cases; p< 0.00001). Tamoxifen also reduced the risk of noninvasive breast cancer by 50% and the occurrence of estrogen receptor (ER)-positive tumors by 69%. No difference was seen in the occurrence of ER-negative tumors. Notably, participants who received tamoxifen had a 2.53 times greater risk of developing an invasive endometrial cancer (95% CI: 1.35–4.97) than did women who received placebo. This increased risk was predominantly in women aged 50 years or older. Additionally, pulmonary emboli were observed in almost 3 times as many women in the tamoxifen group as in the placebo group (RR = 3.01; 95% CI: 1.15–9.27). There was a numerically lower number of deaths in the tamoxifen group compared to placebo, although it did not reach statistical significance (RR = 0.81; 95% CI: 0.56–1.16).

Following the study's results, the FDA approved tamoxifen for primary breast cancer prevention in high risk women.

Conclusion
In high risk women, tamoxifen decreases the incidence of invasive and noninvasive breast cancer, but also increases the risk of endometrial cancer and pulmonary embolism.
http://www.pharmacytimes.com/contributor/timothy-o-shea/2018/03/4-breast-cancer-studies-pharmacists-should-know-about

dtad

gigibee....I don't want to scare you but IMO everyone with dense breasts should have MRIs, especially before surgery and any treatments. My BS at a major NYC university teaching hospital does them routinely. I had an small IDC tumor show up on a 3D mammogram. Then I had a ultrasound and it also showed up. However before my surgery I had a MRI and a small ILC tumor showed up that the mammogram and ultrasound missed! So this is obviously why I believe MRIs, especially those with dense breasts, should be mandatory. Hope this helps. Good luck and keep us posted.

Meow13

I agree with dtad, having an mri is s good idea for all with extremly dense tissue. My mammogram radiologist feels that mammograms for me are not good enough definitely get the mri.

ChesterandRally

I tried taking the aromtase inhibitor because I am post menopausal. I was so stiff and sore and the mood swings were really bad. I think some of this had to do with the cancer (it does take a toll on your body) and the double mastectomy but I also decided not to take it anymore. I want quality of life so if I have 5 or 10 years of being able to do the things I like and not an old grumpy b__ I will take that. I wish there were more posts from people who have chosen not to take the hormones because ,even though you have made a decision, it is still scary and to get some encouragement from others who have made the same choice would be comforting.

gigibee

dtad I appreciate that info. My BS , the head of breat surgery at an NCCN accreditedcancer centertold me he used to do MRIs on about 80% of his cases and now he does them on about 20% due to the number of unnecessary and more complex surgeries that resulted from inaccurate mri results. I will ask again about mri in May at my next appt.

Meow13

gigi, It is very true mri produces alot of false positives and doesn't replace ultrasound or mammograms. But for dense breast tissue it can find potential cancer that mammograms may miss.

dtad

gigibee...I believe MRIs can lead to more biopsies due to false positives. I have not heard that they lead to more surgeries. In fact IMO they would lead to less surgeries because the whole picture is more accurate. Good luck to all.

swimjames

Here's the link to information for medical care after breast cancer treatment, if this helps:

https://ww5.komen.org/BreastCancer/MedicalCareAfterTreatment.html.

Mammograms are recommended 6 months after radiation therapy ended and then yearly. If you've gone through menopause, your breasts should begin to become less dense, which should make mammograms easier to read.

Contrast enhanced mammography is under study (mostly in Europe) and more as a follow-up test after an abnormal screening rather than a screening tool. I'm not seeing any studies that looked at it in women previously treated for breast cancer. I see that Sloan-Kettering is promoting it as a screening tool for some women--maybe they have some research going on there? I am not familiar with this though, so it's really best you talk with your oncologist about the best screening plan for your situation.

As for symptoms of uterine cancer, maybe visit the National Cancer Institute site for general information on uterine cancer (it looks like pain or uterine bleeding are the main symptoms)? Again, it's best to talk with your doctor or oncologist who are familiar with your situation.

I hope this helps a bit. I certainly understand what a frustrating and scary experience this has been for you. Perhaps getting a second opinion may make you feel more comfortable about screening moving forward? It's a good idea for everyone diagnosed with breast cancer to consider getting a second opinion. Seeing a second provider from a different hospital or group practice can:

• Instill confidence in the first provider by confirming a diagnosis or course of treatment
• Give a different insight into your diagnosis and treatment
• Increase your options for care
• Give you a chance to meet with another provider, who may be better suited to treat your cancer

Also, please feel free to reach out to our Breast Care Helpline with any further questions or concerns you may have- 1-877 GO KOMEN (1-877-465-6636). Our helpline provides free, professional support services to anyone with breast cancer questions or concerns. Calls are answered by a trained and caring staff member Monday through Friday from 9:00 a.m. to 10:00 p.m. ET and from 6:00 a.m. to 7:00 p.m. PT. You can also email the helpline at helpline@komen.org.

swimjames

There was a 9% improvement in breast cancer survival at 15 years after taking tamoxifen for 5 years:

https://ww5.komen.org/BreastCancer/Table41Adjuvanttamoxifenandoverallsurvivalinestrogenreceptorpositivebreastcancer.html.

One major benefit of taking tamoxifen is that it lowers the risk of recurrence. In the Early Breast Cancer Trialists' Collaborative Group study, they found that in women with ER+/PR+ tumors, who took tamoxifen for 5 years, 10-year recurrence rates were 25% in the women who took tamoxifen vs. 38% in women who didn't take tamoxifen. In women with node-negative disease, rates of any event (recurrence or death) were 40% lower in the women who took tamoxifen.

"In women with node-negative disease, rates of any event (recurrence or death) were 40% lower in the women who took tamoxifen."

It's the "any event." There are actually many types of "survival." https://ww5.komen.org/BreastCancer/ChancesForSurvivalBasedOnCancerStage.html

This is relative survival so survival in the women who took tamoxifen compared to survival in women who did not take tamoxifen. Not subtracting one from the other. But the percentage of that difference. So:

((Rate of any event among women who took tamoxifen) - (rate of any event among women who didn't take tamoxifen)) / (Rate of any event in women who didn't take tamoxifen)

Postmenopausal women can take an aromatase inhibitor instead of tamoxifen and have no increased risk of uterine cancer. Or women can take tamoxifen until they've gone through menopause and then switch over.

RECENT FINDINGS (2005-15):

https://www.ctsu.ox.ac.uk/research/ebctcg

• The 2012 EBCTCG report on 20 000 women in 20 randomised trials of about 5 years of tamoxifen versus no tamoxifen, showed a highly significant reduction of about a third in breast cancer mortality not only during years 0-4 and 5-9 after beginning treatment but also during years 10-14. Tamoxifen is effective whether or not chemotherapy has been given and, importantly, even in weakly ER positive disease.
• The 2015 report on 30 000 postmenopausal women in 9 randomised trials comparing aromatase inhibitors (AIs) with tamoxifen, showed that 5 years of treatment with an AI produces even better survival than five years of tamoxifen. Compared to tamoxifen, taking AIs for five years further reduced the likelihood of the cancer recurring by 30%, and the risk of dying from breast cancer by around 15%. Thus taking an AI for 5 years, compared to no endocrine treatment, would reduce the risk of dying from breast cancer by around 40% in the decade after beginning treatment.

swimjames

In the trials of about 5 years of adjuvant tamoxifen the absolute improvements in 10-year survival were 10.9% (SD 2.5) for node-positive (61.4% vs 50.5% survival, 2p<0.00001) and 5.6% (SD 1.3) for node-negative (78.9% vs 73.3% survival, 2p<0.00001). These benefits appeared to be largely irrespective of age, menopausal status, daily tamoxifen dose (which was generally 20 mg), and of whether chemotherapy had been given to both groups.

https://www.ncbi.nlm.nih.gov/pubmed/9605801/

swimjames

http://www.nejm.org/doi/full/10.1056/NEJMoa1701830

November 9, 2017

20-Year Risks of Breast-Cancer Recurrence after Stopping Endocrine Therapy at 5 Years

88 trials involving 62,923 women with ER-positive breast cancer who were disease-free after 5 years of scheduled endocrine therapy

nodal status (TN)

NO-no nodal involvement

patients' outcomes during the period from 5 to 20 years.

Among the patients with stage T1 disease, the risk of distant recurrence was 13% with no nodal involvement (T1N0), 20% with one to three nodes involved (T1N1–3), and 34% with four to nine nodes involved (T1N4–9); among those with stage T2 disease, the risks were 19% with T2N0, 26% with T2N1–3, and 41% with T2N4–9.

During the study period from 5 to 20 years, the absolute risk of distant recurrence among patients with T1N0 breast cancer was 10% for low-grade disease, 13% for moderate-grade disease, and 17% for high-grade disease; the corresponding risks of any recurrence or a contralateral breast cancer were 17%, 22%, and 26%, respectively.

DearLife

Swimjames thank you for your thorough and excellent research. This gives me lots of questions to ask the oncologist. I have not yet started treatment but am concerned about side effects. I am 69 and in good health except for the nasty bit they took out. I think surgery is the main line of defense - not sure of the stats but I think it reduces recurrence something like 70%. Maybe more for low grade BC.

I am interested in what you have decided after reviewing the research. Are you considering Tamoxifen or AIs ?