Declining tamoxifen for stage 0 breast cancer

[Anonymous]

I have been reading about the side effects of tamoxifen and other aromatse inhibitors, which are significant for me, especially the retinopathy. I have stage 0 cancer. I am also post menopausal. Did anyone only try the wait and see approach: mammograms in conjunction with MRI and skip these drugs altigether?

[Anonymous]

The implications of this question make it way too important to crowd-source. Please ask your physician.

Signed, an MD

[Anonymous]

I’ve recently started tamoxifen for stage 1. According to my research, many women tolerate tamoxifen/AIs without an issue. Why not at least try before writing them off? And obviously agree with PP that you should have a discussion with your oncologist about it.

[Anonymous]

I have a friend whose breast cancer started as stage 0 breast cancer. She did radiation and treatments.

She ultimately died from breast cancer. Scans were delayed and deprioritized by the medical community during Covid.

This is something to talk to your doctors about.

[Anonymous]

First, talk to your doctor.

Anecdotally, I have a friend diagnosed with stage 0 and she opted for a double mastectomy to avoid the immediate need for that drug regimen. She had solid reasons for this and they weren’t related to unknown side effects. This was a done in close consultation with her doctors.

[Anonymous]

I declined tamoxifen and have no regrets. I’m premenopausal and there is a calculator that your doctor can run to tell you your risk of reoccurrence with different treatments and combinations. I had a lumpectomy and radiation and taking tamoxifen would barely make a difference in chances of recurrence.

Also, as far as the poster mentioning mastectomy, the long term outcomes for DCIS are worse for mastectomy than for lumpectomy and radiation.

[Anonymous]

Anonymous wrote:I declined tamoxifen and have no regrets. I’m premenopausal and there is a calculator that your doctor can run to tell you your risk of reoccurrence with different treatments and combinations. I had a lumpectomy and radiation and taking tamoxifen would barely make a difference in chances of recurrence.

Also, as far as the poster mentioning mastectomy, the long term outcomes for DCIS are worse for mastectomy than for lumpectomy and radiation.

Why? Do they do mastectomy + radiation? I'm surprised a lumpectomy would be better than a mastectomy.

[Anonymous]

I was stage 0 DCIS and started tamoxifen after the lumpectomy and radiation.

I went in for my 6 month routine follow up mamo and there was another spot.

It worked out incredible well timing wise. The radiologist was able to fit me in for a biopsy the next day and my results were sent to my breast surgeon before my scheduled follow up appoint. As with all busy people today, she had not read my chart before walking into the exam room---she was expecting an easy follow up. Boy, was she surprised when she found herself reading new biopsy results.

She consulted with my oncologist and they recommended taking me off tamoxifen since it didn't seem to be working.

I had a double mastectomy a few weeks later.

[Anonymous]

Anonymous wrote:I declined tamoxifen and have no regrets. I’m premenopausal and there is a calculator that your doctor can run to tell you your risk of reoccurrence with different treatments and combinations. I had a lumpectomy and radiation and taking tamoxifen would barely make a difference in chances of recurrence.

Also, as far as the poster mentioning mastectomy, the long term outcomes for DCIS are worse for mastectomy than for lumpectomy and radiation.

I’m sure my friend’s breast cancer specialist would have appreciated your perspective.

At any rate, my friend is eight years out and doing well. This is an example of one.

[Anonymous]

I think genes matter, as does the cancer typing.
I had lumpectomy and was given a choice of tamoxifen or whole breast radiation. No significant difference between them according to both oncologists. I picked radiation. I would not have chosen screen and see.

[Anonymous]

I take baby tam (5mg of tamoxifen) after stage 0 breast cancer. No side effects. So far so good.

[Anonymous]

Anonymous wrote:I declined tamoxifen and have no regrets. I’m premenopausal and there is a calculator that your doctor can run to tell you your risk of reoccurrence with different treatments and combinations. I had a lumpectomy and radiation and taking tamoxifen would barely make a difference in chances of recurrence.

Also, as far as the poster mentioning mastectomy, the long term outcomes for DCIS are worse for mastectomy than for lumpectomy and radiation.

Do you have any evidence of this? The studies all say the same thing - the survival rate is the same. Lumpectomies have a slightly higher recurrence rate than mastectomies, which makes sense - there’s more breast tissue left behind, so more opportunity for a recurrence.

I could possibly see how mastectomy would lead to worse outcomes bc there’s no way to continue surveillance (ie can’t do mammogram or MRI), so maybe a recurrence can’t be caught until it has metastasized, whereas a lumpectomy allows the patient to continue getting mammograms or MRIs and therefore a recurrence could presumably be caught early… but I’m not aware of any data that says that.

[Anonymous]

Anonymous wrote:I declined tamoxifen and have no regrets. I’m premenopausal and there is a calculator that your doctor can run to tell you your risk of reoccurrence with different treatments and combinations. I had a lumpectomy and radiation and taking tamoxifen would barely make a difference in chances of recurrence.

Also, as far as the poster mentioning mastectomy, the long term outcomes for DCIS are worse for mastectomy than for lumpectomy and radiation.

This is what I was going to say. They SHOULD be able to give you a mathematical estimate of your risk. Then, only you can make the choice, but I would urge you to thoroughly talk through it with your team. Good luck! I would not criticize anyone's choice here.

[Anonymous]

Take a look at this risk calculator

https://nomograms.mskcc.org/breast/ductalcarcinomainsiturecurrencepage.aspx

[Anonymous]

I was premenopausal (45) when I was diagnosed with DCIS. I had a lumpectomy and decided to skip the radiation but am taking a low dose of tamoxifen. I started with the low dose and have no side effects. The biggest impact that it has on my life is that I can't do HRT, which is a huge bummer. I would suggest at least trying a AI or a low done of tamox, you can always stop taking it if it bothers you.

I agree with the others about running the numbers on your chance of recurrance. I can't remember mine but I think it was something like 6% without tamox and 3% with.