I was also diagnosed with DCIS and had UMX. I assumed my MO would recommend Tamoxifen, but when I went for my appointment with him last week, he said he didn't. I was kind of shocked, happy, and scared. Not sure what to think.

Meeting with my MO today to make a decision about hormone therapy. She told me that it is purely preventative. I am very confused and don't know what to do.....

tamoxifen is preventative, and also starves any little cancer stuff that might have spread. I am on it because even with a mastectomy, and lymph nodes removed, I have a spot of breast cancer on a rib and near the base of my spine. tamoxifen is reducing both. if you have side effects you cant handle just remember, it is killing then cancer that tried to kill you.

stage 1 is more treatable than 2 or even 4. would you let a campfire burn in a forest just because it might not start a bigger fire? cancer by its nature grows, it is uncontrolled growth. why take a chance with it?

Lisey...I agree there are women on this board that had DCIS and now have invasive cancer. However many of these women did take an anti hormone and progressed anyway. Again please follow the name of the thread ,which is have you refused Tamoxifen? Scare tactics are just not fair. As far as the study you cited, one of the reasons there is a higher incidence is just because dense breasts are much harder to screen. I'm not against anti hormones. I just feel that informed decisions are best. That means getting all the facts and weighing the risks vs benefits. I'm happy you are doing well on Tamoxifen. However it seems to me that those who do well have a hard time understanding those who have SEs. I wish everyone does as well as you but unfortunately its just not the case. Good luck to all navigating this complicated disease and making these difficult decisions.

If you are not worried about having children or more children, consider removing the uterus. I had a hysterectomy and double oopherectomy one month ago. I started Tamoxifen 10mgs two weeks ago, and just stepped it up to 10mgs x 2 per day. The first few days were kind of weird, but if I can get through those, I can do better. I think starting at 10mgs is less stressful on your body and eases it into a medication change. It is not an all or nothing deal, if you don't like it you can stop. If you need a vaca from it, you can take a vaca. Research has determined even 2.5 years has potential to be effective long after those years are over. My stage was a little different, and I was adamant about not take Tamoxifen, until I learned about bone loss, specifically, ONJ - osteonecrosis of the jaw from biophosphonates used to counteract bone loss. Tamoxifen may have a favorable effect on the bones and the cardiovascular system.

Hi DowntonAbbey777:

Please be sure to discuss your family history of endometrial cancer and history of fibroids with a Medical Oncologist if you have not already done so.

Clinical trials have provided information regarding the incidence or risk for certain gynecologic cancers in those receiving tamoxifen. "The doctor did tell me the risk for endometrial cancer was low." The question is not so much whether the risk is deemed to be generally "low", but what it is in quantitative terms and how it compares with the potential risk reduction benefit(s) of treatment in your particular case, in light of your personal risk tolerance.

A second opinion may be helpful to you, particularly if your oncologist did not give you any numerical estimates of your risks of recurrence and new disease (same breast, contralateral breast, distant); numerical estimates of the potential risk reduction benefit of tamoxifen (along with an explanation of relative risk reduction versus absolute risk reduction); and numerical estimates of the risks of severe adverse events. You could also ask your current MO to quantify and explain these if he has not already done so.

BarredOwl

General Information:

Personalized Risk Benefit Analysis:

Factors such as one's estimated risk of local recurrence, risk of distant recurrence, and risk of new disease, menopausal status, and overall health and presentation, including specific risk factors that may be potentially relevant to the side effect profiles of a specific drug, are all considerations in recommendations regarding endocrine therapy.

Patients should not hesitate to ask about (a) serious known drug-related risks of tamoxifen, such as uterine malignancies (e.g., endometrial adenosarcoma, uterine sarcoma), stroke, and pulmonary embolism; (b) what is currently known about the incidence of each of these risks; and (c) whether they have any risk factors or medical history which might increase any of these risks in their particular case.

Then, the potential benefits of treatment in terms of potential risk reduction are weighed against the potential risks of serious side effects, in light of one's personal "risk tolerance." Theoretically, two people may view the exact same situation differently, because of differences in their risk tolerance.

I note that the risk reduction benefit of endocrine therapy is proportional to individual risk, such that those at greater risk stand to benefit more from treatment than those at lower risk. In contrast, in the general case, the risk of severe adverse events remains constant and will therefore weigh a bit heavier in the settings of DCIS (and high risk prevention) than in the setting of invasive disease.

Other Factors that Affect Risk Profile:

Factors such as family history of certain cancers (e.g., breast cancer, ovarian cancer, or other types of cancers) and/or early age at diagnosis may raise concerns of a possible genetic predisposition. Genetic counseling and possible genetic testing (if indicated and of interest) may provide information that is pertinent to personal risk of new disease and could separately warrant consideration of endocrine therapy for risk reduction purposes.

Aromatase Inhibitors for Post-menopausal DCIS:

Tamoxifen is FDA-approved in the DCIS setting, and has been in use for DCIS for many years. Although not yet FDA-approved in the DCIS setting, aromatase inhibitors have recently been added to our local National Comprehensive Cancer Network (NCCN) guidelines for treatment of breast cancer as an option for post-menopausal DCIS patients, based on results from the NSABP B-35 and IBIS-II trials. NCCN guidelines (Version 2.2016) provide:

"- Endocrine therapy [for DCIS]:

Tamoxifen for premenopausal patients

Tamoxifen or aromatase inhibitor for postmenopausal patients with some advantage for aromatase inhibitor therapy in patients <60 years old or with concerns for thromboembolism"

The selection of a particular drug by the medical oncologist takes into account a variety of factors. Aromatase inhibitors have their own distinct side effect profiles, which must also be weighed.

Aromatase Inhibitors in DCIS:

"Anastrozole versus tamoxifen in postmenopausal women with ductal carcinoma in situ undergoing lumpectomy plus radiotherapy (NSABP B-35): a randomised, double-blind, phase 3 clinical trial"

Margolese (2016): http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01168-X/fulltext

"Anastrozole versus tamoxifen for the prevention of locoregional and contralateral breast cancer in postmenopausal women with locally excised ductal carcinoma in situ (IBIS-II DCIS): a double-blind, randomised controlled trial"

Forbes (2016) Main Page: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)01129-0/abstract

PDF Version: http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(15)01129-0.pdf

Hi, I took it for 9 horrible months. I couldn't take the mood swings and Volcanic Rages. It was like I had reentered puberty x 10. I screamed at my kids like a maniac. I broke all sorts of stuff, like my phone, and my Tablet and a pressure cooker during these out of control moments. I was afraid I was losing my mind. The literature mentioned " mood swings" It didn't say it could get that bad. It was just awful. I also stopped being able to sleep without taking stuff. I found out that Tamoxifen has been used in Neuropsychiatric Studies as a treatment for Mania. No Wonder it was making me loose my mind, if it has such big Psychiatric Effects. None of the doctors told me about that. Maybe I will start a thread about that.

https://www.ncbi.nlm.nih.gov/pubmed/18316672

• Format: Abstract

Send to

Arch Gen Psychiatry. 2008 Mar;65(3):255-63. doi: 10.1001/archgenpsychiatry.2007.43.

Protein kinase C inhibition in the treatment of mania: a double-blind, placebo-controlled trial of tamoxifen.

Yildiz A1, Guleryuz S, Ankerst DP, Ongür D, Renshaw PF.

Author information

Abstract

CONTEXT:

Findings that protein kinase C (PKC) activity may be altered in mania, and that both lithium carbonate and valproate sodium inhibit PKC-associated signaling in brain tissue, encourage development of PKC inhibitors as candidate antimanic agents.

OBJECTIVE:

To perform a controlled test of antimanic efficacy of the centrally active PKC inhibitor tamoxifen citrate.

DESIGN:

Three-week, randomized, double-blind, placebo-controlled, parallel-arms trial.

SETTING:

A university medical center inpatient psychiatric unit in Izmir, Turkey.

PATIENTS:

Sixty-six patients aged 18 to 60 years, diagnosed as having DSM-IV bipolar I disorder on the basis of the Structured Clinical Interview for DSM-IV, currently in a manic or mixed state, with or without psychotic features, with initial scores on the Young Mania Rating Scale (YMRS) greater than 20.

INTERVENTION:

Treatment with tamoxifen or identical placebo tablets for up to 3 weeks. Adjunctive lorazepam was allowed up to 5 mg/d.

MAIN OUTCOME MEASURES:

Primary: change in YMRS scores; secondary: change in Clinical Global Impressions-Mania scores, weekly ratings of depression and psychosis, and adjunctive use of lorazepam.

RESULTS:

The 21-day trial was completed by 29 of 35 subjects randomized to receive tamoxifen (83%) and 21 of 31 given placebo (68%) (P = .25). Intent-to-treat analysis of available measures on all 66 subjects indicated that tamoxifen treatment yielded mean decreases in scores on the YMRS and Clinical Global Impressions-Mania of 5.84 and 0.73 point per week, respectively, compared with mean increases of 1.50 and 0.10 point per week, respectively, with placebo; both drug-placebo contrasts differed significantly (P < .001).

CONCLUSIONS:

Tamoxifen demonstrated antimanic properties and was remarkably well tolerated. The findings encourage further clarification of the role of PKC in the pathophysiologic mechanism of bipolar I disorder and development of novel anti-PKC agents as potential antimanic or mood-stabilizing agents.

TRIAL REGISTRATION:

clinicaltrials.gov Identifier: NCT00411203 and isrctn.org Identifier: ISRCTN97160532.

Comment in

• Clinical trials in bipolar mania: implications in study design and drug development. [Arch Gen Psychiatry. 2008]
• Concomitant use of Lorazepam with tamoxifen in bipolar mania clinical trials. [Arch Gen Psychiatry. 2009]
• Tamoxifen and mania: a double-blind, placebo-controlled trial. [Curr Psychiatry Rep. 2008]

PMID:

18316672

DOI:

10.1001/archgenpsychiatry.2007.43

Well, the thing is that just having DCIS puts you automatically in a high risk category for invasive bc. That said, I don't know what I would do if I "only" had DCIS and your family history of endometrial cancer. I haven't had any problems with Tamoxifen, but my situation is very different. Best wishes!

I started off slowly with my doctor's supervision. She also did vitamin d and iron levels which we will be working on. Don't discount something out of fear or other's negative experiences. Fear of side effects probably is responsible for some women not taking the meds. If you are looking for uplifting and positive support, visit my thread....