Breast Cancer Support Group

Hello, everyone,

I have not written in this forum before, I'm usually in the Fibromyalgia forum. However, on May 8th I was diagnosed with Invasive Lobular Carcinoma. I found the tumor a few weeks before my appt. and was very surprised, especially at the size of it. However, since then I have had a mammogram, biopsy and surgery to remove the tumor that turned out to be 3cm. Now I am almost ready to go into radiation treatment followed by Tamoxifen. Unfortunately, I had a test done called an Oncotype DX that would tell me what the chances are of a recurrence. The test came back with a score of 22 which puts me in the grey area. Now I have to make a decision, do I followup with chemo or not.

Has anyone else been presented with this decision? I am very uneasy trying to decide whether I do the chemo or not. Any input would be very much appreciated.

Thanks,

Anita

welcome to the group im carolyn the gl of the group and my advice would be to seek a counsellor ive had to make a similar decision it wasnt easy i have inflammitory bc

Hi Anita,

Last year in April I had the same situation. My tumor was 1.9 cm with no lymph spread. I had a lumpectomy and my oncotype came back a little higher than yours - 23 I think putting me directly in the middle of the grey area. It is a very hard decision to make. Personally I chose chemo. Then had radiation and am on aromatease inhibitor. I had the least amount of chemo, which was 4 sessions, every three weeks. I used coldcaps to save my hair, which worked well, and I am back to my life and energy, and hair. Perhaps consult with a few of your other doctors to get their medical opinions. I did, and that helped my decision. Good luck to you.

Ollibobs,

Thank you for the information, but what is a coldcap? I did not realize there were any options but to loose the hair, even the doctor told me that. Now I am going to look into coldcaps.

I will be starting the radiation the week of the 25th and the chemo after we come back from Hawaii, which will have it's down falls during the holidays but I had to make a choice. Thanks again for your input, I really do appreciate it.

Sincerely,

Anita

You can research Penguin Cold caps. They are somewhat of an ordeal but if you follow the instructions, and the company will guide you well, you can keep enough hair that most people won;t notice. Your oncology center will have to give you some leeway as you'll need more time there for the cold cap process but worth asking.

I am newly diagnosed. Invasive ductal having surgery 21st

In reference to oncotype dx. Where can I find the scale

Positve, neg, and grey area?