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Tamoxifen for DCIS
11 Posts
Diagnosed with DCIS in Dec ‘20. Had two lumpetcomies followed by a single mastectomy instead of radiation. I’m now recommended Tamoxifen for 5 yrs. I’m 41 and really don’t want to start on horomone therapy and have considered a mastectomy on the other breast to avoid this and be done with all the worry. I am at a 11% reoccurrence right now and if I go on Tamoxifen it is taken to 6%. For such an early stage cancer diagnosis has anyone else gone on Tamoxifen ?
8 Replies
Runner Girl
1849 Posts
Hello Ckh

It's tough to decide on taking Tamoxifen or any of the Aromatase Inhibitors. I started Tamoxifen in December 2018 at 53 for my breast cancer. I am now on an aromatase inhibitor, Anastrozole - taking it after 2 years of Tamoxifen is supposed to deliver a reduced rate of recurrence for my type of cancer - IDC, ER+ and HER2+.

Here is an excerpt and a link to a website regarding your DCIS and Tamoxifen.

Hormone Therapy

Since DCIS is not capable of spreading, there is no reason to use chemotherapy. However, if the DCIS is ER-positive you will need to consider whether you want to take tamoxifen for five years to reduce your risk of a recurrence. The decision to take tamoxifen for DCIS is a difficult one for many women, as the benefits from taking it are small and have to be weighed against the risks associated with the drug as well as any side effects you may experience.

If you have a family history of breast cancer in addition to DCIS and you want to understand more about whether your family history may contribute to your breast cancer risk, you should make an appointment with a genetic counselor to discuss testing for the hereditary breast cancer gene mutations, called BRCA1 and BRCA2, which put women at higher risk for breast and ovarian cancer.

If you decide to have genetic testing and if you are found to carry a BRCA genetic mutation your doctor may suggest that you consider a bilateral prophylactic mastectomy (removal of both breasts). This will reduce the chance of getting breast cancer by about 95 percent. The surgery is recommended if you have a strong family history of the disease. It is not recommended for women just because they have had a diagnosis of DCIS, however, some women do choose this option.

Link: https://drsusanloveresearch.org/ductal-carcinoma-situ-dcis/

Runner Girl
119 Posts
i have been struggling with this as well.
I was also diagnosed with DCIS in Dec 2020 but after surgery (a partial mastectomy) invasive cancer was found but my lesion was mostly DCIS. My oncologist described my diagnosis as low risk early stage breast cancer. So I was surprised to hear that she was recommending Tamoxifen for a minimum of 5 years.
it does reduce risk of recurrence by 50% so my first thought was of course I’ll take it. But then I began wondering what my actual risk of recurrence was. And if I’m low risk why take it? I don’t like to take ANYTHING.
I had a family history and was eligible for genetic counseling and testing. I’ve completed that and thankfully tested negative. But I learned my lifetime risk of a new breast cancer is 16%. I’m assuming if I took Tamoxifen that would be cut in half.
But I still don’t really know what my risk of a local recurrence is? Dr Paula Gordon from Dense Breasts Canada said women with dense breasts have a 21% risk of local recurrence. I am Category D density so I am considering this to be my rate of LOCAL recurrence.
One thing I have also recently read is that 20-30% of women diagnosed with early stage breast cancer go on to develop distant or metastatic disease. This is very concerning to me.
I am going to ask my oncologist if this is accurate.
My risks feel high to me and I’ve now decided that I must go ahead with the hormone therapy. This is almost a reversal bc I was leaning towards not taking it after I read about some of the side effects.
I’m 51, but have relatively young children ( 9 and 13) and feel I want to do everything I can to remain cancer free.
I am meeting with my oncologist mid June and will go over my understanding with her but unless I’m wrong about what I’ve learned re recurrence I am going ahead, I’m at least going to give it a try.

11 Posts
chrys21‍ its a tough call b/c you don’t want to have regret if you do have reoccurrence. All my onc doc told me was ‘you know your numbers so have to decide what that means to you’. I am 41 with 3 young kids so I can’t risk reoccurrence like you said. I’d be interested to hear what your doctor says. Do you remember where you read the info about..... One thing I have also recently read is that 20-30% of women diagnosed with early stage breast cancer go on to develop distant or metastatic disease.?

this is for sure concerning
110 Posts
Ckhchrys21‍ The big thing with any of the hormone therapies is if you really can’t handle the side effects you can always stop. Not everyone has bad side effects. My sister had terrible side effects and had to stop, so I was terrified to start on them. But....I think I am doing ok. I have no problem taking something to make me feel better and was given the green light by my oncologist. Also, we rarely hear from people who are doing just fine with few or no side effects.
Runner Girl
1849 Posts

If you haven't seen this already you may want to check out the conversation in this thread: https://cancerconnection.ca/discussions/viewtopic/41/68373?post_id=351786#p351786

It is largely on the same topic.

Runner Girl
119 Posts
Hi Ckh

i saw the statistic about Mbc here...

I don’t want to cause distress. It may be that this number is only true with certain features of early stage breast cancer so may not apply to you or me.

I will let you know what my oncologist says: I see her mid June.

119 Posts
Thank you DMT‍ and Runner Girl

5 Posts
Hi there
Just Sharing my experience as you decide what is best for you
i had early stage localized BC in 2004 at age 51
lumpectomy followed by 30 radiation and 5 years of Tamixifen
my only noticeable side effect was some pretty horrendous hot flashes - taken care of by adding Clonidine
Dec 2020 I had a recurrence in the same breast and DCIS in the other
opted for bilateral mastectomy
offered 5 years of Letrezole - wary because of possible significant side effects
Finslly decided to give it a try - 1 month in and so far mild flashes , a bit lower energy and odd minor headache
Fingers crossed this is as bad as it gets
long and short of it all is there never a guarantee but the difference in survival/recurrence rate was enough for me to take this oral chemo
All the best to you on this worrisome journey - I feel very lucky there is no indication in my lymph nodes either time
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