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Lobular Invasive HER2NEU positive
I have completed 35 rounds of radiation after being diagnosed on Aug. 3, 2012 with ILC, ductal in situ and lobular in situ.
I just found out yesterday that ILC that is Triple Positive is very rare. Which is depressing. After a battery of more sophisticated tests, my team determined that chemo and herceptin risks outweighed the benefits based on the size of my tumor--less than 1 cm--and the FISH, oncotype and mammaprint. Any other Triple Positive ILC ladies out there? I've found three so far in the US and Australia. |
Re: Lobular Invasive HER2NEU positive
Hi;
I'm triple positive but not ILC. I have always considered it to be a good thing as there are many treatment options out there for us. However, I would not be comfortable at any size tumor not receiving chemo or herceptin. All the very best, Cathy |
Re: Lobular Invasive HER2NEU positive
I'm triple pos but with IDC but would agree with Cathys comments re the herceptin at least!
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Re: Lobular Invasive HER2NEU positive
I am triple positive but not ILC. I wonder (like Cathy) why this would necessary be a bad thing with many avenues of treatment. I do not understand the decision to avoid chemo/Herceptin with HER2 at this point in time. I would get more opinions.
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Re: Lobular Invasive HER2NEU positive
Welcome to the site. Have no advise except, Please know that you are in my prayers. Gods blessings to you and your family.
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Re: Lobular Invasive HER2NEU positive
I guess I should be more specific. I believe that her2+ bc likes to travel. When I first saw my oncologist he thought that I didn't need chemo. My tumor was 3 cm and I was very uncomfortable with this but was in the middle of trying to express this when he found the second tumor in my supraclavicular node upon physical examination...so all changed then in any case. However, I was node negative and asked to be tested for her2 as it was not standard at that time...positive. My point is that my cancer spread in an unusual way and I credit being her2+ to that. I would seek the most aggressive treatment for your cancer as this is your best opportunity to get a cure. Chemo to me is actually easier than radiation and herception is a breeze....lol. Of course I am kidding but you get the picture. You will survive and hopefully for the very, very long term.
My best regards, Cathy |
Re: Lobular Invasive HER2NEU positive
I am (was!!!)
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Re: Lobular Invasive HER2NEU positive
Hi Kim,
I know someone here in Maryland who was diagnosed with Stage 2b ILC. That was 4 years ago. She's doing just fine. She actually had ILC as well as IDC in her right breast. She had a single mastectomy, did chemo, herceptin but no radiation. She is still on Tamoxifen. If you want I can pass along her name and number. She was a volunteer at Y-Me.org which was a 24 hour call center for women going through treatment. I was paired up with her and she was a great support for me.I know she would be delighted to help you if you needed support and could answer your questions. let me know. |
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