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Newly Diagnosed Support

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AllisonW35 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AllisonW35 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 06 2013 at 8:40pm
Alyca, I was diagnosed last November, about a month before turning 35. 1.8 cm, stage 1, grade 3, no lymph involvement. I am currently undergoing ACT chemo. So, the things I wish I had thought of back when I first received the diagnosis: you can get a second opinion on your pathology and with any mammograms, MRIs, etc, from MD Anderson or some other big cancer hospital if you want. You can also get second treatment opinions, which include having chemo before surgery, sometimes by having the physicians teleconference. Pre-surgery chemo wasn't an option for me because we didn't know the tumor was cancerous until it was removed. Grade 3 does mean aggressive but it also means that it usually responds well to chemo. My oncologist says I have at least an 85% chance of it not recurring since I am having chemo.
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Whatablessing2002 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Whatablessing2002 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2021 at 2:38am
Hello everyone 
My name is Maria and I was newly diagnosed with triple negative breast cancer  in December. My treatment plan for adenocarcinoma is 1st chemo 2nd surgery 3rd radiation. My doctors are saying that I may be able to save my left breast.  It is my hopes that I can but I'm not sure being BC runs in my family. I have so far had 2 rounds of chemo  I have an amazing support team but I would like to connect with others that are on this journey at the present or ones that have traveled and experienced the things or processes already. 
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2021 at 10:40am
Dear Maria,

Welcome to our TNBC Family,

You have come to the right place for support. The women here are exceptionally knowledgeable and caring. 

Have you had genetic testing? How old are you, please? I am asking because you mentioned that "BC runs in my family."

You also mention that you live in North Carolina. There are two excellent Breast Medical Oncologists who are in North Carolina and who may, if you are interested, try to find out what type of TNBC you have. There seem to be 6 or 7 different types. And it may be useful to find out which subtype you have. 

I am a patient advocate and have helped many hundreds of women on this site who have/had TNBC over the last 12 years. I am not a doctor and will not give you medical advice but I may be able to be helpful to you. If you would like to talk please send me a PM and I will send you my phone number. 

If you would prefer please write me at info@sagepatientadvocates.org 

There are no charges and I would be happy to talk with you.

Good luck with your journey. Also, my daughter was diagnosed with TNBC when she was 
36 years old, in 2004 and August will be 17 years that she is cancer-free. So please try your best to have a positive outlook. And again, welcome.

warmly,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Whatablessing2002 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Whatablessing2002 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2021 at 2:28pm
Thank you so much for that warm  and encouraging invitation.  I just recently had genetic testing  and I just turned 46 in December. I am from  Lumberton NC which is in Robeson County. 
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alyca View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote alyca Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2021 at 6:39pm
Hello!  Sounds like you have a great plan in place. I would wonder about getting BRCA tested--at your young age, and having a family history of breast cancer, that seems like a real possibility.

I had BRCA testing, which came back positive for a BRCA 1 mutation.  At the time, I knew of only 1 family member with breast cancer (an aunt, diagnosed at age 45).  I now know that there are TWO BRCA mutations in my family-one from my mom's side and one from my dad's.  We are a one in a million kind of family.  My older sister has a BRCA1 mutation and had prophylactic removal of her breasts and ovaries; my younger sister has a BRCA2 mutation and still has her breasts/ovaries.  I had my ovaries removed about 5 years after my cancer (waited so I could have 2 IVF assisted pregnancies).

Once I had BRCA testing come back positive, my doctors strongly recommended having bilateral mastectomies, which I did.  Definitely the right choice for me.
Diagnosed 3/1/13 with Stage2 TNBC with a BRCA1 mutation; B mastectomies/tissue expanders 3/25/13;5 months dose dense AC-T chemo;last dose 9/11/13. Breast implants 10/17/2013; Nipple creation 2/28/14
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jan 27 2021 at 8:38pm
Dear Alyca,

Thanks for sharing. Wishing you and your siblings the best of luck.

Alyca, as difficult as the BRCA mutation has been for you and your family it could have been worse.

I have helped 3 women over the last 17 years who inherited both a BRCA1 and BRCA2 
from their parents and they, all, had many health issues. If parents each have the same BRCA allele a Certified Genetic Counselor might advise them to not have a family because if the fetus carries both mutations it will not survive.

In my unprofessional opinion, anyone with a BRCA1 or BRCA2 mutation who has breast cancer might consider seeing a Breast Medical Oncologist who is BRCA savvy. There are several BRCA Clinics in the United States. One is the Basser Center in Philadelphia (part of the Univ. of Pennsylvania), one is at UCSF in San Francisco and another is just starting at
Cedars-Sinai in Los Angeles. In addition, many of the top cancer centers in the U.S. have at least one Breast Medical Oncologist who is knowledgeable about BRCA.

My daughter is now 16 years NED (No Evidence of Disease) and inherited the BRCA mutation from me. She had TNBC at age 36 and had bi-lateral mastectomies and gynecologic surgery. I pray that she will not have a recurrence. She paid a heavy price,
physically and psychologically having the surgeries but at least she is here and healthy.

There are a number of researchers working to come up with a 'fix' for the BRCA mutation. That would be truly marvelous. 

The other unsolved mystery is why 70% of BRCA+ women, have TNBC when they have breast cancer. The converse is not true. 70% of women with TNBC do not have the BRCA mutation. But is there some connection between BRCA and TNBC that could help us understand both BRCA and TNBC?

with my love to all here,

Steve




I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MelissaG Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2021 at 4:10pm
Hi there,

My mom was recently diagnosed with TNBC and I'm trying to be the best advocate for her that I can. I worry she will hop on the internet and fall into a rabbit hole of fear, so I'm hoping I can be as supportive and educated as possible.

She was diagnosed about 2 weeks ago with well to moderate differential, invasive mammary carcinoma with mixed ductal and lobular features and the tumor is 6 millimeters (so .6 centimeters). After discussion with her surgical oncologist, she is moving forward with a lumpectomy and during that surgery they will check the lymph nodes to see if it has spread. I guess from there it will determine if chemo is necessary, but they are not recommending it before the lumpectomy. Regardless of chemo, she will need 15 rounds of radiation. About 10 or so years ago, she was tested for the BRCA gene and it came back negative, however she is now going to do additional genetic testing.

I guess why I'm here is to find out others experiences. I'd love to be able to share stories of strength and survival. We'll know more in the next few weeks (her lumpectomy is scheduled for March 4), but am curious to hear what path others have gone down.

Thank you all in advance for your support and for this forum.
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2021 at 9:03pm
Hi Melissa,

Your mother is lucky to have you to advocate for her.  A good support system is so important and really helps while going through treatment.  You said your mom was tested years ago for the BRCA gene.  Now they are finding many more genes associated with breast and ovarian cancers besides the BRCA gene.  Additional genetic testing is so important.  It appears they caught it early and hope all goes well with her surgery next week.  Keep us posted.

Donna
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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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 24 2021 at 10:40pm
Dear Melissa,

I totally agree with Donna that your mother is lucky to have you advocate for her.

Has your mother seen a breast medical oncologist who is TNBC savvy in addition to a breast surgical oncologist? 

And has she seen a breast radiation oncologist or is the breast surgical oncologist managing her care?

Happy to talk to you privately, if you wish...You can send me a PM and I can send you a Zoom invite or you can write to me at info@sagepatientadvocates.org 

I am not a medical professional and will not give you medical advice. And there are no charges. 

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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