Diagnosed with DCIS: How do I decide on treatment?

I assume she meant whether to take an Aromatase Inhibitor or not. If you are ER+ and/or PR+ then this drug suppresses all hormones in your body, which were feeding your cancer. 40% of people have negative side effects from taking this pill. I have about 13 months left to take mine to hit my 5 year mark. My doctor talked about taking it for 10 years - but I discussed it at length with her and we decided I could stop at 5 years. I was on anastrozole for 12 months and suffered terrible joint pain - especially in my hands. I switched to Exemestane, which for me, has had less side effects. If you are pre-menopausal - they usually prescribe tamafoxin. Get all the information you need to make an informed decision on this. Good luck.

Hello all. I just had a partial mastectomy three weeks ago for stage 0 DCIS. I've been to the oncologist (yesterday) and have an appointment with the radiologist mid September. I've been researching the two treatments that are available and I'm leaning towards no treatment. I'm 72 years old and it seems like both treatments are fairly extreme and I'm wondering if my quality of life is more important than taking either of these treatments. I would love feedback as I feel like I really have no one to help me make this decision.

Hello @tctredwell1. Thank you so much for your quick response. I'm sorry you are not doing so great today. With hope tomorrow will be better. For sure let me know what the results are from your doctor. I'm so confused and frustrated with everything so I understand how you're feeling, or as much as I can. I'm still just trying to make my way through the pill treatment. I don't want to take it however I'm afraid not too. Good luck and I'm sending prayers your way. 🙂

Yes I have had surgery about 6 weeks ago. I'm so confused about what to do as I have read so many negative things about taking a pill. I feel like I should but then the next day I feel like I don't want to. I had an appointment with my oncologist and she explained what the pill would do and that was about it. When she walked out of the room she said "let me know if you want to take the pill". No other information was given to me, no resources. I've been left I feel trying to figure out what is best for me by myself. So I turned to this website and maybe I was in the wrong group because almost everyone is saying how horrible the side effects are. I'm sitting on the fence everyday. Not sure how long I have to make my decision about the treatment.

Hello @tctredwell1. I read your above post and your situation sounds a lot like mine. My question for you is did you decide to take the pill treatment? I'm 72 years old. My cancer was DCIS Stage 0. My surgeon didn't think it was necessary, didn't give me a choice, that I have the OncotypeDX test so I can't fall back on those results. There is no cancer in my family. It was diagnosed as ER Positive. My concern is the side effects that I have previously read. I'm an active 72 year old and want to enjoy my life for as long as I can, as we all want to of course. Please let me know what you decided to do and I would like to hear how you are doing.

Thank you

I assume she meant whether to take an Aromatase Inhibitor or not. If you are ER+ and/or PR+ then this drug suppresses all hormones in your body, which were feeding your cancer. 40% of people have negative side effects from taking this pill. I have about 13 months left to take mine to hit my 5 year mark. My doctor talked about taking it for 10 years - but I discussed it at length with her and we decided I could stop at 5 years. I was on anastrozole for 12 months and suffered terrible joint pain - especially in my hands. I switched to Exemestane, which for me, has had less side effects. If you are pre-menopausal - they usually prescribe tamafoxin. Get all the information you need to make an informed decision on this. Good luck.

My Lane I had surgery July 22 invasive ductal carcinoma stage one and grade one oncotype test DS ER positive. Test came back four, no chemo and I said no radiation due to other problems that I have. My Dr. Would like for me to take a pill for five years . I will go back again Friday to talk to him again, i still do not want to take the pill. I lie awake at night worrying about my decision. I’m 72 years old just want to enjoy what life I have left.

My Lane I had surgery July 22 invasive ductal carcinoma stage one and grade one oncotype test DS ER positive. Test came back four, no chemo and I said no radiation due to other problems that I have. My Dr. Would like for me to take a pill for five years . I will go back again Friday to talk to him again, i still do not want to take the pill. I lie awake at night worrying about my decision. I’m 72 years old just want to enjoy what life I have left.

The aromatase inhibitors do not "supress all hormones in your body" or people would die from taking them, given that there are hormones keeping us alive :‐).

Aromatase inhibitors block the production of estrogen. Thereby, depriving estrogen-fed cancer cells of their fuel, in a sense.

The current statistic cited is that aromatase inhibitors may cut the risk of recurrence of breast cancer by somewhere between 40-45%. That number does not apply to all breast cancers, some being much more aggressive, caught at a later stage, etc., so is a very rough "average."

Approximately 50% of the women who begin aromatase inhibitors discontinue taking them within the first five years for myriad reasons. Most who do, discontinue them within the first two years, usually because of side effects. This is known as the 'non-compliance issue' in the oncology world and several studies address it.

Google Scholar is a good search engine for research and studies related to the many facets of breast cancer treatment and recurrence stats.

The anti-hormone aromatase inhibitors and tamoxifen are powerful drugs and saving some lives. I hope that anyone whose oncologist(s) recommend them try them and, if side effects are negligible and/or the drugs easily tolerated, stay on them for the extra security they can provide, depending upon the type of cancer one is dealing with.

For those taking aromatase inhibitors, please remember that estrogen helps feeds bone renewal, so these drugs require paying close attention to any effects on bones. A recent DEXA scan would be wise to have as a basis for monitoring any changes to bone density after from taking atomatase inhibitors so they can be addressed.

If you had the OncotypeDX test and the report from Oncotype listed your result as 4% 'risk of recurrence (loco-regional) within 9 years', that's a very low risk. Assuming, using the statistic accepted by oncologists, that aromatase inhibitors 'may' (that verb is important) reduce your risk of recurrence by less than 50%, the drugs would theoretically reduce your risk from recurrence risk from 4% to about 2.4%.

Put it another way. If you do NOT take the drugs, you have a 96% chance that the cancer will NOT recur 'within 9 years.' And the drugs 'may' only improve that to about 97.6%.

I know three women with similar OncotypeDX scores who declined anti-hormone therapy with the agreement of their oncologists. They are all over 65 years of age and tried the drugs, had side effects that, they felt, were quality of life issues for only a small increase in risk of recurrence.

These are personal decisions. But one way to carve out a path forward would be to get a second opinion from a different oncologist. You can also always try the drugs and might have no side effects or discomfort of any consequence.

I tried anastrozole and had side effects that were a problem. But I also had the OncotypeDX that gave me a very low risk of recurrence as well so stopped taking the drug as the risk/reward ratio wasn't persuasive. I did so though after consulting with two oncologists, both of whom concurred.

It is your body and your life and doctors can advise but they don't live with the consequences. And they frequently don't agree with each other either. So I hope you find the decision that gives you the most peace of mind...