Is there anyone that had estrogen positive cancer, without use of AI?

I was diagnosed with estrogen + breast cancer in 2015, had lumpectomy, chemotherapy & radiation. Just recently I have been diagnosed with breast cancer metastasis in my bones and not sure where else. I am hoping it is early on and medication can slow or control growth and prevent spread. Not sure yet what my treatment plan will be. Will find out more 8/16.

Yes, I am on exemestane.

Hi! Sure hope your recent appt went well and that you have a plan! I am on Letrozole since Feb for ILC. My onco waits a full year before a diagnostic mammo and with my dense breasts hoping she will add an MRI - may I ask how your metastasis was discovered? Early detection is all we have and I do hope liquid biopsies become more available to us. Good luck xoxox

Hi! Sure hope your recent appt went well and that you have a plan! I am on Letrozole since Feb for ILC. My onco waits a full year before a diagnostic mammo and with my dense breasts hoping she will add an MRI - may I ask how your metastasis was discovered? Early detection is all we have and I do hope liquid biopsies become more available to us. Good luck xoxox

I was diagnosed with ILC about 1 1/2 months ago. 6 days ago I had the tumor removed and 4 lymph nodes. The surgeon told my husband all looked clean. I have no idea what will happen next. I wait for the tumor board to decide. During an appointment I was told I would have mamogram followup 1 year and MRI the next. This concerns me because I either read or was told that ILC is hard to diagnose with a mamogram. Mine was diagnosed when calcification/distortions were seen on the right breast and an MRI was ordered. During the MRI, they saw the distortions on the left breast which was confirmed to be cancer with another test--a Mamogram w/contrast. I'm worried about only having mamograms since I was told they normally only see larger ILC tumors. I'm going to ask for the Oncotype test. I feel it will make my journey less stressful. 2 years ago I was diagnosed with a very rare ocular malignant melanoma. (If you ever hear anyone say they are seeing flashes of light they need to be seen by a retina specialist) prior to surgery I was offered a molecular genetic test which gave me an indication of it's chance of spreading. And also helped with followup decisions. I was a 1a out of 1-2. Meaning I was fortunate enough to have a 2-10% chance of metastasis vs a 2 which is a 70%. I now have yearly tests (CT, Pet or something similar) vs 3-6 months for someone with a score of 2. If the Oncotype test can give me the same mental peace/relief or the chance to have more testing if necessary, I want it.

I seldom am able to comment, but your case almost parallels mine . Since 2018 have had 2 lumpectomies in same breast. Did nothing the first time, but added 15 radiation and Tamoxifen treatments the second time in 2021.
Now (by July 2023 ) pain and tests verified metastases to the bones ( upper spine).
Oncologist stopped Tamoxifen and prescribed aromatase inhibitor(letroxole),which I hesitate to take due to its bone thinning effect (age 81). Will see him in a month at which time he will add herceptin and possibly bone augmenting drug, the latter I also am not happy about. Will discuss this all with him in a month from now.
Hope to share our treatment types and results.💕

Hi there , I thought for Estrogen positive post menopausal women don’t use Tamaxofin but only The aromatase Inhibitors . Due to the estrogen no longer being produced by ovaries. did they say why they put you on tamaxofin in 2021 when you where post menopausal? I was recently diagnosed . Am age 50 post menopause and even my second and third opinion doctors say I would be on Aromatse inhibitor as not a candidate for Tamoxifen. I will be getting a mastectomy in the right breast .

Hi-thanks for your reply. Aromatase inhibitors we’re suggested in 2021, but due to my already osteopenia and age and possible side effects listed of AIs it was my not so wise choice to take Tamoxifen. Did feel it directly affected the estrogen receptor of the tumor.
Now realize not all side effects listed will occur and are to be weighed against the beneficial effect of the drug.
I now started the AI and will follow my oncologist’s other suggestions at our next meeting. Am following a heathy vegetarian diet too.
50 is very young and besides doing thorough research and having a trusted and knowledgeable oncologist , we can only do what is best for our individual cases.
Wishing you all the very best and future communication 💕

Hi!I hope your are recovering well! The oncotype test will be helpful and you will have results fairly soon to help guide your next step. I was fortunate to be able to skip chemo and instead go right to radiation - 19 treatments with last three being "boosts" as one of my margins wasn't great. I started on Letrozole in Feb (57 yrs old) and hanging in. I share your concern with mammo and have heard about contract enhanced mammo so hoping we can get access to this scan as well as MRI. I'm hoping I don't have to beg at my October appt with my oncologist at Dana Farber and will keep everyone updated. Please do the same and I'm so happy to hear you have had not had reoccurrence of your ocular melanoma. I too have had melanoma but in situ in a mole. My family has high risk of melanoma and am followed every 6 months. Stay in touch xoxo

I have exactly what you have. I tried tamoxifen and had awful side effects. I have osteoporosis so not eligible for AIs unless I take a bone protecting med also like Zometa. My Oncotype score was 14 which is considered low. If I take hormone therapy I have 4% chance of recurrence after 10 years. If I don’t take hormone therapy I have 8% chance of recurrence. I have decided to do life style changes instead of taking medication because the risk of recurrence is still pretty low. I know several women who have chosen this route also. My surgery was 9/21/2021. Radiation was completed 12/14/2021. Having breast cancer is a crap shot. There is no guarantee that one won’t have a recurrence. I pray everyday I won’t.