Estrogen/Progestrone medication & DCIS Stage 0 Grade 3 diagnosis

She didn’t want to have to worry about anything showing up in the future. Her daughter was in school in London and she didn’t want to deal with radiation or drugs. She did have reconstruction but she said it was not pleasant. Lumpectomy with radiation is supposed to be as effective as a mastectomy…unless it shows up in the other side.

No! I refuse. My friend was on tamoxifen 20 yrs ago and she regrets it now. She has osteoporosis and kidney issues. I’m 63…not worth the quality of life sacrifice.

I read that Tamoxifen causes bone loss in premenopausal women but slows down bone loss in postmenopausal women. It's not as effective as AIs.

Yes, Tami does help those who are POST meno with bone health. Thats a pro, the cons are clots, hot flashes, endometrial cancer, stroke. I am noy keen on taking it.

Hello, I was dx 4/29/2024 with Grade 3, HR+, DCIS as well. Remember, we do not have to be in a rush with this diagnosis. Take your time and research. Yesterday was my very first appointment with any kind of specialist or doctor since my biopsy results/diagnosis. I did NOT like her. She is a breast surgeon who tried to sell me and used scare tactics. She did not even want to talk about nutrition or fasting or other alternative ways to help with the diagnosis. All she wanted to know was hat type surgery I wanted. I don't WANT ANY surgery! However, with the DCIS being high grade, I know that is gong to be the route to take ALONG WITH lifestyle changes. I need to lose the 30 pounds I gained in the last 14 months after starting hormone therapy. Exercising at least 30 minutes a day. Cutting out sugar and processed foods. Those things will make my prognosis much better and lessen my chance of reoccurrence. Estrogen does not cause cancer. I am unable to help with the Mammo w/contrast. An MRI can lead you down a rabbit hole as it will show up every little thing. If you opt for mastectomy, no need in my opinion as you are removing the breasts(s) anyway.
I have my appointment at Mayo in 2 weeks. Breathe, research, then make an educated decision.

My diagnosis after needle biopsy is Atypical Ductal hyperplasia with foci approaching low grade DCIS. My radiologist recommended excisional biopsy. It turned out both IDC and DCIS grade 2. The reason he recommended surgery was that needle biopsy only examines a small piece of the cyst. My guess is even with grade 2, DCIS can break out of the ducts to be invasive. Fortunately, my oncotype is low, so no chemo. My aunt had DCIS and she went through surgery, radiation, and Tamoxifen (She had her uterus removed a long time ago, so no uterine cancer risk). She is almost 10 years out. The surgery decision is personal. You decide what you are comfortable with. Do not let doctor pressure you into doing something you are uncomfortable with. For me, I don't want to look back and say what I should have, could have done to prevent recurrence. I went through lumpectomy, sentinel lymphnode biopsy, radiation, and now am taking exemestane. Sentinel lymphnode biopsy is the worst.

It’s always good to hear you have a slow growing DCIS! That does give you time. The grading system still gives a range - and we all may not have the same expected prognosis. Mine at grade 2 had a higher miotic rate (cell splitting, growth). I started at 1.6 cm at the biopsy. Had I waited until the pathology lesion was 2 cm the treatment would change and be more involved.

My breast surgeon discussed surgery with me. Each specialist has what they do best. An oncologist can discuss the what and when of treatment, risks, options, adjuvant therapy, etc. The cancer center I went to offered me a visit with a dietician and also had available info on alternative medicine. I visited with a recreational therapist to discuss activity levels. The more I learned about cancer treatments the more respect I had for each specialty - as the research keeps giving us new options. It’s a dizzying amount of data, new protocols, genetics, and immunotherapy.

The MRIs I’ve had actually helped confirm I needed less treatment, not more. The original mammogram showed 2 suspected lesions. The MRI confirmed one.
I also had minimal calcifications in the DCIS making it more difficult to see with a mammogram, so I worry when I’m only offered a mammogram.
At 18 months post surgery, an enlarged axillary lymph node that they had been tracking was determined by the MRI to be stable and have non-cancerous features.

My brother was a general surgeon - we used to joke that if you talk to a pharmacist they want to give you a drug to solve your problem, if you see a psychiatrist they want to see if it’s all in your head (mental), if you see a chiropractor straightening your spine will take care of it, and if you see a surgeon they want to cut it out!!

Hope your appointment in two weeks can answer more of your questions and help find what will work best for you!

Thank you so much I have the same thoughts.

. I did have a 2nd mammogram with contrast and my take away was nothing new showed up. That is good news. I too do not want surgery of any kind but I'm actually more afraid of the radiation and medication that comes afterwards.

Sometimes I think dealing with my fear has been the hardest part! It helped me to remember that I had efficacy in terms of treatment. For example, my radiologist told me I could take a 4 day "vacation" any time I needed it from radiation. I had 15 treatments and was fine--no skin problems or burning, and some mild fatigue that resolved. As to medication, I'm guessing you mean one that inhibits estrogen. I've been on letrozole for about 18 months without any problems. As you probably know, there are different kinds, and you can work with your oncologist. I'd told myself I'd do nothing that was unendurable and ended up--knock wood--having an ok time. May things go smoothly for you!

You may have some choices that have less radiation, less medication.
I had only 5 days of radiation, total. For some DCIS it could be enough. Some people are taking lower dose meds, every other day, or taking med holidays. Still not the answer we’re all looking for, but at least options.