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@kimogi57

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.

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Replies to "I was diagnosed with ILC about 1 1/2 months ago. 6 days ago I had the..."

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