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Mother Diagnosed - Stage 1 TNBC

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raNar View Drop Down
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    Posted: Sep 07 2012 at 7:33pm
I am hoping I can get some support. My mom called me yesterday and told me she had stage 1 breast cancer. Today I received a call telling me it was triple negative breast cancer. I have a serious phobia of knowing how the body functions, but I researched about this diagnoses.

I am so troubled. I am only in my second week of graduate school. While I only live an hour and a half away I feel that I am too far away from her to confront her and help her during this difficult time. I want to be there for her as she has given so much of herself into raising my twin and I. What can I do to help her, should I quit school, how long will this road be?

Please, if anyone could give me some insight on your experience with this sort of thing...
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Sep 07 2012 at 9:16pm
raNar,
I'm sorry this is happening for your family. I posted in the other spot that you did here on the forum. I will try not to repeat myself too much. Just wanted you to know that you are being noticed here. 

Sounds as if you have been a very supportive force in here life raNar. It is a scary thing to be diagnosed with, but the treatments are manageable, and we do get through it even if at times it is rough.
If mom hasn't already suggest a notebook for thoughts, questions & noted from doc appointments. 

An hour and a half it really not that far away for visits, do you and your mom have other family members or friends that will be able to be of support? There are always weekend too.
Was mom tested for the BRCA 1&2 genes? As these genes can if posirtive leave us at a higher risk for other woman cancers. Many of us ladies & men diagnosed with breast cancer turn out to be deficient in vitaminD.

You or mom can come here and bring every emotion to this forum, we all have shared a tremendous array of feelings.

Keep us posted.

Positive thoughts,
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Twin1967 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Twin1967 Quote  Post ReplyReply Direct Link To This Post Posted: Nov 08 2012 at 10:21pm
Hi my name is Connie my twin has stage 4 tnbc it has spread to media sternum ,lung, adrenal glands. Brain and liver at this point they have her on temodar . She goes to ctca which is a friendly .loving and caring facility which is called magic kingdom . The bestbinhave ever been too .is anyone here going through this exact so we can talk about everything I need to know what the upcoming events are I am her best friend as she mine  I need to know to better help herhelp her
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Dear raNar,

Welcome to our TNBC Foundation family. I am very sorry you have need to be here but we will try to help you, as best we can.

The first thing I would suggest you do is try to take a deep breath and gather your strength. There is a very good chance Mom can get through this o.k.

It is very important, in my unprofessional view (I am a volunteer patient advocate and do not give medical advice) to make sure that Mom is in the hands of a Breast Medical Oncologist who is familiar with TNBC. I am told that Dr. John Cole may be a good resource for Mom. He is at Oschner Clinic in New Orleans I believe. 


The other cancer center I would suggest is MD Anderson Cancer Center in Houston Texas. I think highly of a Dr. Ana Maria Gonzalez-Angulo and MD Anderson is ranked the number one cancer center in the U.S.


I am a great believer in second opinions and it may also be especially important to get a second opinion on Mom's pathology report to make certain the results are correct. Ask if FISH was used to determine if HER2/neu was truly negative. About 15-20% of the time the IHC results are incorrect and if so the patient misses the opportunity to take a drug called Herceptin which can help if the HER2/neu is + instead of -.

I am going to send you a PM (Private Message) with my contact information. I would be happy to talk with you.

As far as quitting school, I am going to give you what some may consider a convoluted answer. I would be guided by what your mother would like you to do and also if you do stay in school you and your twin should make as much effort as possible to be as supportive of mom as possible. 

There is a good chance Mom will go through a course of chemotherapy and if you or your twin can go with her to her infusions I think that would be important, supportive time.

wishing you and your mom the best of luck.

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 SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 09 2012 at 2:18pm
Dear Twin 1967,

Welcome to our TNBC Foundation and very, very sorry you are here under such awful circumstances for Connie and for you.

I debated and debated about answering your thread but finally decided to do so....maybe because my daughter was born in 1968 and she has a twin brother. She was diagnosed with TNBC in 2004 and she is doing well.

I think the best thing would be if we could talk on the phone. The printed word can be misunderstood. Speaking by phone is second best and meeting in person is my first choice but I doubt that will be possible. I was in Fayetteville, some months ago but do not have plans to return, anytime soon. I will be in Houston December 18th-20th with a patient (I am a volunteer patient advocate) but that is a long trip and I imagine you will want to spend your time with your sister, as you should, if you can.

Would be honored to talk to you by phone. I don't have a magic wand and I will not give you medical advice but perhaps I can be of some help to you. And there is no charge.

I am lost for words at the moment. I hate this disease.

One thought I do have is that your sister should test for the BRCA mutation. If you are identical twins and your sister is positive for this mutation you will be positive, too. We can talk about this on the phone as well.

my heart is with you both,

Steve




Edited by steve - Nov 09 2012 at 2:20pm
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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