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Lobular Breast Cancer: Let's share and support each other

Breast Cancer | Last Active: Nov 12 5:54am | Replies (395)

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@kimogi57

I am also interested in recurrence. Having a mamogram only is also my biggest fear--I read this cancer is hard to detect with a mamogram until it larger. Have you been given the Oncotype DX test? I am 66yo. had a suspecious area on my right breast in July 2022. Left breast was fine. 8/23/2022 I had an ultrasound and they could see nothing so they ordered a MRI. I am highly clostrophbic and put off the MRI until 5/2023. The MRI with and without contrast showed an area calcifications on the right breast but also showed an enhancing 5 mm mass on my left breast. June 12, 2023 I had a contrast enhanced mamogram and ultrasound which showed a 6mm enhancing mass on the left breast. On 7/10 I had a MRI guided biopsy which which ultimately led to a diagnosis of Invasive Lobular carcenoma, Nottingham grade 1-2 and ER/PR 100% positive and HER ngative. I had a lumpectomy on 8/21. Two lymph nodes were negative and my tumor margins were clear. If I remember correctly, my surgeon told me I would most likely have a mamogram in 6 months and than yearly. At the time that frightened me because I read my cancer isn't detected with a mamogram until it is larger. I see the radiologist for the first time tomorrow and the oncologist on Wednesday. I found out about the Oncotype DX test on this site so I asked the nurse that the encotype DX test be preformed weeks ago. She said something to the effect that my tumor was too small for the test. What does the size have to do with it? It is used to tell me my chances of reoccurance which mentally is helpful. So, she called about a week ago and asked if I would be interested in participating in a study (my surgeon had mentioned it to me saying the radiologist may ask me about it). Before I can participate I have to have the Encotype DX test and I have a score of less than 18--not sure what it means. Funny that now it is not too small!! I am considering the study since I can quit it at any time. The study involves patients 50-70 having no radiation for ILC patients with small tumors. You are required to take the hormone blockers for 5 years. It is phase 2 of the study. I believe they already finished patients 70 and above. My mother had 1 breast removed at 73 and the other at 77. she is now 84 and cancer free. She did not take the recommended 5 years of Tomoxifen due to the side effects. On 1/21 i was diagnosed with Ocular Malignant Melanoma. A very rare tumor behind my left eye. I had brachetherapy and am cancer free. This cancer has a high rate of metastasizing so there is a molecular genetic test that was given to me as part of a study. You get a score of a 1 or a 2. Luckily I was a 1a!!! I have a very low chance of it spreading. If it had been a 2 I would have a 70% chance of it spreading ot my liver or lungs. My testing would have been more frequent and my stress level would have been very high. That is why I want the test for this cancer. If it is high I will consider different treatment. I am sorry this is so long and i wish the best for everyone on this site.

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Replies to "I am also interested in recurrence. Having a mamogram only is also my biggest fear--I read..."

Sorry to hear that you have been through a lot. Good news about your 1a result on the occular tumor tho! That was a victory!
I did not have an Oncotype dx test either. The oncologist said because my Ki 67 test number was low at 5%. From what I am reading not all hospitals do Ki 67 tests. Not sure on that tho. Maybe you can ask your Doctor what your Ki 67 test result was. I was told if it's under 14% usually no chemo and better all around.
They told me since I had a bilateral mastectomy no mammograms or Breast MRIs now. I just will have my chest wall and underarms checked every 6 months for 5 years. If they want to do a breast MRI on you once a year and you are very claustrophobic they can give you a medication to relax you. I have heard from people that does help. Maybe that's an option for you? You probably already knew that. My Mom got claustrophobic so I know how how awful that can be. I close my eyes as soon as I get on the table of the MRI machine and never open them until I am out of the machine. That helps me.
Good to hear about your Mom being a survivor at 84! Hooray!
Sending love and healing wishes to you❤️