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Rayna15 View Drop Down
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    Posted: Oct 24 2016 at 8:49pm
Hello. I am new to this forum. My name is Rayna and I was diagnosed with Triple Negative Infiltrative Ductile Carcinoma Stage 3 Grade 3 (and BRCA1 mutation positive) in April. I am 33 years old. I had 2 tumors in my right breast and some lymph node involvement. One tumor was about the size of a golf ball. It just popped up. Very fast growth rate. My oncologist wanted to do chemo first. I had A/C first and then Taxol. I ended up allergic to Taxol and was hospitalized with pneumonitis after 4 of 12 rounds. After that, my oncologist ordered another MRI because she couldn't feel anything there. To both of our surprise, it looked clear. So we decided to skip out on more chemo and go straight to surgery.
Since there is such a risk of recurrence, I opted for a bilateral mastectomy with reconstruction. I had the surgery last month. It all went well and I showed pathological full response to the chemo. I have tissue expanders and am in the process of expansion.
However, since there was lymph node involvement, I was highly recommended to have radiation therapy so I am being expanded quickly as I have to be fully expanded before radiation. I know there is a controversy as to whether or not radiation is necessary in women with a pathological full response. I don't want to pass on it if it will help, but also don't want to go through it if I don't need it. My other option is to join a research study to determine the answer to that very question where a computer randomly assigns me radiation or no radiation. I am so confused. Has anyone else had a similar situation? What did you do and are you happy with your decision?
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123Donna View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2016 at 9:07pm
Hi Rayna,

So glad you felt comfortable enough to post and share your story and experience.  My only concern regarding the research study is if you truly think you should have radiation, then if you get assigned to the no radiation arm, you won't benefit from the treatment.  

Here are a couple of links, with a new study pointing to the benefits of radiation.  Can you get another opinion regarding radiation?  I sought out 3 when I had my recurrence - they basically told me the same thing which helped me move forward with treatment.

New guidelines on radiation therapy for breast cancer



Triple-Negative Breast Cancer Associated With Higher Risk of Local Recurrence

ScienceDaily (Oct. 31, 2012) â€” Research from The Cancer Institute of New Jersey (CINJ) shows that women with triple-negative breast cancer and no more than three positive lymph nodes following a mastectomy have a higher risk of local recurrence than similar women whose disease is not classified as triple-negative. The work will be presented as an abstract during the 54th Annual Scientific Meeting of the American Society for Radiation Oncology (ASTRO) in Boston this week. The Cancer Institute of New Jersey is a Center of Excellence of the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School (RWJMS)


To read the entire article:

http://www.sciencedaily.com/releases/2012/10/121031141721.htm


Summary:

"By further defining the risk of local recurrence in women with triple negative breast cancer, clinicians can better determine whether radiation treatment should be part of post-mastectomy therapy," noted the lead author of the research, Atif J. Khan, MD, a radiation oncologist at The Cancer Institute of New Jersey and an assistant professor of radiation oncology at RWJMS.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Rayna15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rayna15 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2016 at 10:55pm
Thank you so much for responding so quickly! The links you provided were very informative. I had 5 nodes that showed "treatment response" from the chemo, but no sign of any left over cancer cells. I think its a good idea to look into a second opinion. Thanks again! If anyone has any other information or experience, I would appreciate any input.
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