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Julz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Julz Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 10:40pm
 Thank You Steve for responding it was the middle of the night when I posted from Pennsylvania.  I didnít expect anyone then to respond.  Also I had to work all day. 

Wow that is a lot of types of Triple Negative!  When do they test to figure out what kind it would be?  Very interesting Iím a CNA.

I had a X-ray of my neck that found calcifications in my left carotid artery.  I went for a neck US & the tech found a nodule on each side of my thyroid. They were about 1 cm each.  The Dr called with my results & I had to tell him.  It was just a note at the bottom of the report as incidental thyroid nodules found.  He  ordered a Thyroid US as I reminded him of my Sister-in-Laws was found by accident by a chest X-ray & she had also had BC before the Thyroid CA.  I had the Thyroid US & they only said the left side needed biopsied.  Just watch the right side. I pointed out to the surgeon doing the biopsy that the right side was taller than wider like my BC cyst was & when he looked over all the films he decided to biopsy both nodules.  The left side was an adenoma & the right side was papillary cancer 1.2 cm.  The tumor was attached to my esophagus & wrapped around my laryngeal nerve. As soon as I knew I had nodules my symptoms made sense.  Low in my throat soreness for over a month. Really bad sweating.  I thought I was going through menopause.  I love to sing as Iím first soprano.  I was loosing my voice & couldnít hit the high notes & my voice would crack. Everything came out including my parathyroid.  I had radiation iodine as they had to leave a little cancer in so I could swallow & talk. 

I go for my yearly Thyroid US to make sure that that cancer is staying gone.  So I have a lot on my plate & taking it one day at a time!  But Iím one who likes to know about things that could be going on & be up to date.  

Thanks again.

Partial Mastectomy & CNB 5/22/2012, DX 5/30/2012 DCISMI, 2.8cm, Tumor stage T1, Grade 2-3/3, 0/2 nodes, ER-/PR-/HER2? not enough invasive tissue to test. 33 rounds whole breast radiation.
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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: Oct 05 2020 at 10:58pm
Hi Grace,

Welcome to our wonderful TNBC family.

I think you should try to make sure you are seeing a Breast Medical Oncologist who is an expert in TNBC. It is a complicated, difficult, disease and many physicians are not as familiar/knowledgeable as they should be.

The other thing that I think is important is to see a Certified Genetic Counselor and have a discussion about genetic/ molecular testing. Perhaps you have done that already?

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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Grace View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grace Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2020 at 1:33pm
Thank you Steve,

I have only seen my general surgeon who is sending me to a local oncologist for a pet scan, and to discuss treatment. I haven't met with him yet so I don't know what he is thinking course of action would be just yet, probably know more once we get the pet scan back.  I tried calling every major cancer hospital in Florida to see if they accepted my BCBS PPO plan, and none of them do. I'm so discouraged as everything I try to do seems to hit a roadblock of some sort. I have a 1.7-2 cm lump that was excised, and he said he will have to go back and redo margins and do lymph node tests. But wanted to do pet scan first since I have some back pain. I'm trying to stay positive, but this is the hardest thing Ive ever faced, and I feel there is not a sense of urgency around here :( 
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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: Oct 06 2020 at 2:11pm
Dear Grace,

I suggest you send me a PM and I will send you my phone number and we can talk by phone or please send me an email at steve@sagepatientadvocates.org and I can send you my phone number and we can talk. I am surprised that you have a PPO plan but no one will accept it. 

Let's talk please. I am free now if you want to get the process started. I am not a medical professional and will not give you medical advice but I can make a suggestion regarding a Breast Medical Oncologist. That physician should also be able to schedule a scan for you, if s/he feels it is appropriate.

In my unprofessional opinion your care should be managed by a Breast Medical Oncologist who is familiar with TNBC not a general surgeon.

warmly,

Steve

p.s. will be unavailable, after 12:10 pm PST that's 3:10 pm for you until 8 p.m. your time tonight.

p.p.s. there will be no charges from SAGE Patient Advocates or myself, personally.


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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Julz View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Julz Quote  Post ReplyReply Direct Link To This Post Posted: Oct 13 2020 at 12:00am
Hi ALL!  
Well I had the biopsy on the 6th & it took a little over an hour.  I wish I could say it was easy.  I had a Vaso episode & got nauseated.  They missed the tumor the first set of cores they took so the went in again. I stopped counting at 16+ cores.  The day after the biopsy when I took the big bandage off my skin had blistered where the bandaid glue was.  Skin came off weeped & hurt really bad. I see the surgeons Nurse Practitioner on Wednesday for my follow up.  Below is my Pathology report. 
The pathology revealed
 Left breast, upper outer quadrant (MRI-guided core biopsy with mini-cork clip placement):
Nodule of fat necrosis (2.6 mm) with associated acute and chronic inflammation, foamy macrophages and giant cells. Background benign breast tissue.
The result is benign and concordant with the imaging findings.
Color/description: Yellow-tan soft tissue cores
Aggregate measurement: 3.5 x 2.0 x 0.5 cm
This is all benign thankfully.  
Partial Mastectomy & CNB 5/22/2012, DX 5/30/2012 DCISMI, 2.8cm, Tumor stage T1, Grade 2-3/3, 0/2 nodes, ER-/PR-/HER2? not enough invasive tissue to test. 33 rounds whole breast radiation.
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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 13 2020 at 8:20am
Julz,

Congratulations on the benign test results.  I'm so sorry it took so many tries to get the sample. 

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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