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unaswered questions

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Support Groups
Forum Description: Support Groups
Printed Date: Oct 21 2019 at 1:35pm
Software Version: Web Wiz Forums 12.01 -

Topic: unaswered questions
Posted By: leeellenrey
Subject: unaswered questions
Date Posted: Jan 08 2019 at 9:09am
I was diagnosed January 2017. I completed radiation in July 2017 and Chemo in May 2017. Since then I have been to all my follow up appointments with surgeon, oncologist, radiology.
Everyone says all is fine, no problems, come back in x months. There are no tests, no xrays, scans, blood work nothing but a mammogram (one side only). No matter what I ask they say it is to be expected, normal, nothing to worry about...
I don't understand I guess. My breasts ache randomly more at some times than others. They tell me it is normal, maybe scar tissue and to massage it, that it is nerves regenerating from the lumpectomy, that it is body fighting back to normalcy. 
But how do I know? they will not do a scan for 'patients peace of mind" 
I know triple negative is most aggressive and likely to return. Mine was stage 2, they said no nodes involved. But why do I feel like this? I am 65 years old. 
anyone have any answers? 

Posted By: TBUtah
Date Posted: Jan 08 2019 at 9:51am
I am scheduled for my first 3 months followup and Iím pretty sure they will just watch. In had lymph node involvement and they found a tumor after surgery and chemo. 

Iím terrified as well especially since I read that because of the radiation I received they will not be doing scans. They told me that they threw everything at my cancer.  It was a one time shot. 

Has anyone else had this experience?  Iím trying to be patient, but going out of my mind. Iím 60 years old Stage 3 Grade 3 with lymph node involvement. Chemo therapy was effective except for the new tumor. 


Posted By: 123Donna
Date Posted: Jan 09 2019 at 8:03am
It seems that most do not get scans or other tests as follow up.  My follow up was blood work, tumor marker tests, physical exam.  My onc (back in 2009) did not agree with standard protocol and said she orders a scan for her TNBC patients once a year for the first 3 years.  It was at my first yearly scan (2010) that we found my breast cancer had recurred.  I had no symptoms, blood work and tumor markers were all normal.  I've never agreed to the wait and watch approach, but this is my personal opinion.

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: crismatic64
Date Posted: Jan 09 2019 at 10:10am
I'm a newbie too. I had stage 3 breast cancer in 2007-08 at the age of 57. After chemo, surgery to remove lump, and radiation; I ended up with a 35% chance of recurrence. I remember being so lost after all was said and done. Yes, I was cured but I felt like crap for 18 months after the ordeal. When I mentioned something, I got the same scripted answer. So I feel your frustration.
In 2016 at the age of 64, I learn I have stage 4 TNBC. I take my daughter with me to dr appointments for clarity. I won't leave until I understand what is going on. Scans are so important, especially when they are reviewed by the specialist. But now I'm starting all over with a new dr. which is equally as frustrating.
Just try to remember, it takes longer to heal and your body has been through alot. But keep track of your aches and pains and let your dr. know at your next appt. Ya just never know.
Sending angels your way to help get peace of mind.


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