Community Member
2 years agoHello. I’m wondering if anyone on here is ER+/PR- and what your treatment plan has been.
Accepted Answer
Treatment plans for ER+/PR- breast cancer typically focus on hormone therapy since the cancer responds to estrogen, and many community members have shared their experiences with medications like tamoxifen or aromatase inhibitors along with other treatments their oncologists recommended. Connecting with others who have similar receptor status can provide valuable insights and support as you navigate your treatment journey.
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Community Member
6 months agoHi Anna - thanks for your question: The NCCN guidelines state that if an individual has a breast cancer that is 1%-100% ER positive, they are candidates for endocrine therapy. There is limited information regarding single hormone receptor positive subtypes pertaining to PR negative status guiding treatment decisions. For more detailed treatment options you can authorize your Medical Records via the treatment tab -> Records and our NP team will then request on your behalf. Do also feel free to reach out to our NP team via the “AskO4M” action on the bottom of the Home Screen.
Community Member
6 months agoNothing but anastrozole
Community Member
6 months agoHi Anna - I'm also ER+/PR-. I've had 2 oncologists who didn't even bring it up. When I asked, both said since I'm ER+, it doesn't change the treatment. From reading, though, it seems it's higher risk, at least for the first 5 years, but after that, the recurrence rates are similar to ER+/PR+. PR- also tend to have higher oncotype scores, but not always. Maybe you already knew all of this? If so, sorry to repeat the info. I chose a double mastectomy, partly for symmetry. I did 6 cycles of TC, radiation, anastrozole. I also did a 3 year trial for the drug ribociclib (Kisquali). My Breast Cancer Index score came back recommending an aromatase inhibitor for 10 years, but there's just no way. I've lost so much bone density since starting the anastrozole. Still, I now know anything I can do over 5 years will be good. I'm going to try for 6-7... and then maybe there will be some great treatments or even a cure on the horizon! What was your treatment plan?
Community Member
6 months agoStage 1A grade 2 onco score 30 estrogen + no lymph nodes took out 5. I am 77 Have wegners, but been quiet for 10 years off of meds for it. Have diabetes not on insulin Severe arthritis psoriatic and osteoarthritis in bad shape. Osteoporosis. Lump found in November 22,I broke arm had distal displaced humerus fracture took a 12 inch plate to put together. A little background, so the first biopsy not done till April, so it was growing In me for 5 months The radiologist said no. The chemo medical says I won't make it through the chemo. So the only treatment is the anastrozole so much more bone pain. I change clothes 3 to 4 x a day, never mind the hair loss it's so bad. Radiologist said if I don't anastrozole, I have over 50 percent chance it's coming back. 20 percent without chemo and 5 with chemo. Surgeon said I need to look at the 80 percent survival, not 20, coming back. I know there is oral chemo they give it for Wegners What would you do? Everyday I think the cancer is back. Medical oncologist says the anastrozole will get the runaways then why is there chemo HELP HELP HELP
Community Member
6 months agoLisa, I also did a double mastectomy, 4 rounds of TC and radiation (I had DCIS at the margins and LVI). My oncologist have been on the same page as your, they have just treated me as HR+. I have pushed for the Kisquali treatment but my oncologist refuses. What was your onco score. Did you have any positive lymph nodes??
Community Member
6 months agoKathy H. I can not answer the question for you. I am a young 70. Most people think I am in my late 50s. It gets amusing sometimes. That being said, cancer treatment is hard. I work out a lot, so my deca scan is that of a young person. Talk to your Dr about the hot flashes and osteoporosis. I am stage 4. The cancer spread to my lungs 7.5 years after my initial diagnosis. I reviewed my most recent scan with my Dr, and I was told by the oncologist on Wednesday that my cancer is gone. Only some small scare remains. I take an aromatase inhibitor and Ibrance. I have never had chemo therapy. I have been told that at my age, it would do more damage than help. It is a drug of last choice for ER/PR+ HER2-. Perhaps you could get a second opinion through another local cancer hospital or look at the Outcomes4Me second opinion program
Community Member
6 months agoMe! I’m in the early stages of treatment though since I was just diagnosed last month. So far I’ve had a lumpectomy and sentinel node biopsy and am waiting for the oncotype score as lymph nodes were clear. I do understand being PR- will probably cause the score to be higher and my cancer was grade 3, so I’m expecting it to indicate I will need chemo.
Community Member
6 months agoKathy what was you er % and were you hers2 neg
Community Member
6 months agoEr 92 percent her negative pr negatuve
Community Member
6 months agoI was ER + 80%, PR + but only 1%. They say that is still considered positive. HER2 -. I had 4 rounds of TC chemo. No radiation. DMX. Clear nodes. Is anyone this low PR + and is it really considered +?
Community Member
6 months agoMelissa yes. I am 2%. I have responded super well to Aromatase inhibitors.
Community Member
6 months ago@glenda d. How many years out are you?
Community Member
6 months ago7 month and I am no Evidence of Active disease. NEAD. this is after a distant recurrence. My original diagnosis was 2015.
Community Member
6 months agoI am two years NEAD. I want to see 40 more years at least!!
Community Member
6 months agoMelissa, I made a mistake. I am pr positive also. The 92 percent estrogen, but there was a lower one like 43 percent I got 2nd opinion, loved new Dr. She said too late for chemo 5 mo out and should have tried. She could have reduced dosage done first chemo in hospital to monitor to be I am OK. New Dr. said that I needed radiation and sent a referral to my oncologist on sep19 as of today no response they even called. So at 10 am today, I called the new Dr's office by 130, and they called to say it was done. They are so great. So, hopefully, I will get treatment. Nobody wants it, but I don't want cancer either So darn sad I have to fight for this 😢
Community Member
6 months agoKathy H, why too late for chemo
Community Member
6 months agoI’ve been Single Hormone positive (ER+ PR- HER2-) since finishing chemo in July 2022 after Lumpectomy in December 2021. In November 2021, I was ER+ PR+ HER2 - with only one tumor that grew from 2.4cm in October to 4.8cm by December 2021. Further tests showed my Oncotype score being 59.. I was Stage 2 Grade 3 Invasive Ductal Carcinoma. Beginning in August 2022, they said I had Chemoresistant IDC, Recurrent ER+ PR - HER2 - Stage 2 Grade 3 multi focal cancer. They continued to do procedures refusing to do surgery to remove what became 2 tumors in a month. By February 2023, the cancer had multiplied so much and grown in sizes that it was invading my chest wall and abutting my skin. I am now Stage 4, Micrometastatic Grade 3 Single hormone positive, Chemoresistant IDC. I had a mastectomy in May 2023 followed by Radiation which I completed in August 2023. We are waiting for test results to see where I am at now. Hopefully this info helps some how. Take care 💕🌸🥰 ~ Mayumi
Community Member
6 months agoAnyway had 6 mo mamo and ultrasound. They say there is a 1.1 cm cyst want another ultrasound in 6 mo birads 3 I dont like they are watching would prefer biopsy. On 3rd treatment with radiation.
Community Member
6 months agoAlso ER+ Pr- and her- onco 30% Recommend 4 txs Chem. Then radiation then the 5yr pill.. Had surgery was removed . They called it inv ductal with mucusious. Start chemo soon.. Hoping the saying" what doesn't kill you makes you stronger"is true! Very nervous about it all...
Community Member
6 months ago@Mayumi B. Have you gotten your test results in yet? I am trying to follow your treatment... It seems a lot to go through! Your are in my thoughts and prayers.
Community Member
2 months agoTreatment plans for ER+/PR- breast cancer typically focus on hormone therapy since the cancer responds to estrogen, and many community members have shared their experiences with medications like tamoxifen or aromatase inhibitors along with other treatments their oncologists recommended. Connecting with others who have similar receptor status can provide valuable insights and support as you navigate your treatment journey.
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