Welcome New Members - new to group

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Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=10115
Printed Date: Mar 26 2026 at 11:30pm
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Topic: new to group

Posted By: PADanaG
Subject: new to group
Date Posted: Jul 13 2012 at 10:27pm

Hello,
My name is Dana, I am 43 yrs old. I was Dx'd in April of 2011 with Stage 3A TNBC. I underwent 4 rounds of A/C and 3 rounds of Taxol. I was not able to get the 4th round because of an infection on my head. In October I had a double mastectomy and was told I had PCR. Then I had 28 radiation treatments. All of my follow ups have been good. I was feeling really good too. Then on the morning of 6/14 I was having some troubles, by early afternoon I fell and was not able to get up, I was taken by ambulance to the ER and from there was transported to Jefferson U. Hospital by helicopter. they found a mass in the right perietal lobe with a large amount of swelling around it. It was actually the swelling causing the problems and they were able to control the symptoms with steroids. I then had surgery to remove the tumor and on the 18th will be getting a gamma knife treatment. As of right now there was only 1 met. and they do not see disease any where else. I still have to get a PET scan tomorrow and a bone scan but the CT scans and chest Xray were all clear. Blood work is also all good.

Now my dilemma is what is next?? My onco doc is suggesting more chemo. the radiation doc at Jefferson has "strongly recommended I get another opinion before taking more chemo" since other than the one spot that has been removed I am NED. He suggested i try to get into Sloan Kettering or Johns Hopkins, they are the closest to where I live in PA. I have done some research on my own and have found I meet the parameters for long term survival having only 1 met, being young and pre menopausal (even after chemo!) and having NED in the rest of body. The hope is this little bugger got up to my brain before the chemo got to it and hid there but didn't spread.

All i know for sure is I want to stay with my family, I have a husband and 5 children who need me. My youngest is only 2 1/2! Any advice, anyone out there with a similar scenario or know someone with it??

Before they found the brain met I had this feeling like I wasn't done fighting even though my follow ups were all coming back good, I just had a sixth sense or something, now I feel better, like this is what they needed to find.

Replies:

Posted By: 123Donna
Date Posted: Jul 14 2012 at 12:23am

Dana,

Sometimes that sixth sense is right on target. Welcome and glad you shared your story with us. It sounds like you may be limited to this one met and hopefully the gamma knife will do the job. I like the recommendation of getting another opinion. Both Sloan Kettering and John Hopkins are excellent.

Dr. Tiffany Traina is a TNBC expert at Memorial Sloan Kettering Cancer Center in NYC.

http://www.mskcc.org/cancer-care/doctor/tiffany-traina - http://www.mskcc.org/cancer-care/doctor/tiffany-traina

Please keep us posted on how you're doing and what you decide.

By the way, have you had your Vitamin D levels tested? Most of us diagnosed have extremely low levels of Vitamin D.

http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page31.html?KW=Vitamin+D3 - http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page31.html?KW=Vitamin+D3

http://www.vitamindcouncil.org/health-conditions/cancer/ - http://www.vitamindcouncil.org/health-conditions/cancer/

Donna

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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

Posted By: SagePatientAdvocates
Date Posted: Jul 14 2012 at 12:39pm

Dear Dana,

Welcome to our family and sorry you had need to find us.

Donna mentioned Dr. Traina at Sloan-Kettering and I would like to also suggest Dr. Tanya Prowell at Johns Hopkins.

http://www.hopkinsmedicine.org/doctors/results/directory/profile/0012228/tanya-prowell?dbase=main&setsize=10&spec_disease=Breast - http://www.hopkinsmedicine.org/doctors/results/directory/profile/0012228/tanya-prowell?dbase=main&setsize=10&spec_disease=Breast

In addition to working at Hopkins Dr. Prowell has a position at the FDA and is very familiar with all clinical trials for breast cancer. Currently, there are no FDA approved drugs for breast cancer that has metastasized to the brain.

I may be able to help you get appointments with either of them or both.

I will send you my contact information if you would like to talk.

good luck to you.

warmly,

Steve

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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