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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 didn’t 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 I’m 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 I’m first soprano.  I was loosing my voice & couldn’t 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 I’m 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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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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Post Options Post Options   Thanks (0) Thanks(0)   Quote ellenofpaul Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2020 at 3:43pm
Thank you for the Website. I have been looking for something that will give me more information about what I am going through. I finished Chemo, 12 Taxol and 3 AC, but it did not shrink the cancer as much as I hoped it might before the surgery, soon to be scheduled.  The information on the Forum is helpful and gives me lots of tips. 
Thank you again,
Ellen
Diag: 6/5/20 - 3.4CM - Stage 2B
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Vivian View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Vivian Quote  Post ReplyReply Direct Link To This Post Posted: Nov 11 2020 at 10:37pm
Hi Ellen, welcome to to forum, and I am sorry for the reason you are here. It seems you were able to receive treatment right away, which is great! You said your tumor didn't shrink as much. Did you check it with imaging or other method? Sometimes although you still feel the lump, it could be just dead cells, or hallow tumor bed. Only pathology report after surgery can tell it for sure. Even if there is anything left, there are a lot of ways to continue getting rid of the remaining bad cells. 

As you see in my bio, I had 4 AC first. I felt the site shrinking quickly. But my doctor did not think so. So I requested ultrasound and it showed no cancer. But still my doctor said it was palpable to him. I continued with Taxol to finish the full course of chemo regimen. There is no certainty about what was the exact situation back then. 

I hope your surgery goes well. Have faith that you can fight it off! 

Vivian
Dx 12-27-2019 TN,Stg 1, Grade 3 Ultrasound 1.5cm/MRI 1.8cm, node-,BRAC-.
DD AC x 4, ultrasound cCR;
DD T x 4
Lumpectomy:5-28-2020; 0/2 nodes. pCR.
Radiation: 20x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ellenofpaul Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2020 at 4:34pm
Hi Vivian,
Thank you for the encouragement. I'm hoping that what is left is just dead cells.  I'm scheduled for surgery Monday, November 16th.  I'm hoping it goes well.  I was told I should know about the pathology report a week or two after that.  I'm not sure when radiation will be scheduled, but have the Dr. lined up for that part as well.   

Ellen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2020 at 11:40pm
Dear Ellen,

Good luck with your surgery on Monday!!!! We will all be rooting for you.

Suggest you ask your Breast Medical Oncologist or your Surgical Oncologist about full molecular/genetic testing. Two companies that do it are Foundation Medicine and Tempus. The information gathered may be important for your care.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Vivian Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2020 at 1:17am
Hi Ellen, 

Hope your surgery went well today! Take a lot of rest and drink a lot of water for the anesthesia medicine to pass. Hope all the best for the rest of your treatment!

Vivian
Dx 12-27-2019 TN,Stg 1, Grade 3 Ultrasound 1.5cm/MRI 1.8cm, node-,BRAC-.
DD AC x 4, ultrasound cCR;
DD T x 4
Lumpectomy:5-28-2020; 0/2 nodes. pCR.
Radiation: 20x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote littlelady Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2021 at 7:51am
Hello All!

I found this safe place in 2019.  Many thanks to Donna and Steve for answering my endless questions privately and helping me navigate this long process.  While actively undergoing treatment I was so emotionally overwhelmed.  I am just now able to have the courage to introduce myself to this forum.

I was diagnosed in early 2019.  My treatment ended in early 2021.  I am currently dealing with side effects from the 2 years of treatment.

I am learning to focus on and appreciate today.  I am learning to look forward and not look back.

Thank you to all that have shared their knowledge and experiences in this forum so that I do not feel alone to face what the future holds.


Edited by littlelady - May 28 2021 at 7:57am
DX 1/19, age 48, IMC-38mm, IDC-5.1mm, stage 2, grade 3, 0/2 nodes, BRCA-, AC x4 (2/19), T x3 (4/19), BMX (5/19), T x6 (6/19), T&C x3 (6/19), X (8/19 - 1/20), IMRT Rads x36, K (2/20-1/21), CT NED 6/20
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2021 at 12:31pm
Dear littlelady,

So glad you posted on the TNBC Foundation forum. I love this forum because the people here truly care and there is a gentleness about the forum that I find very appealing. I hope, in time, that you feel truly safe and supported here.

Your idea of looking forward not backward is important. I would add "please try to find the beauty in each day." I have been doing that for many decades, since my Mother passed when I was 20 (I am 77 now). Often these days my 'beauty' comes from my grandchildren, especially. There is a purity about their love and the way they express themselves.

One of my grandsons told me something in a factual way the other day that has continued to give me joy a month later. He is almost 6 years old and will be very tall according to his pediatrician. I told him "you know you are going to be taller than Grandpa some day." He proudly said "for sure, Grandpa, I will be taller than you." And then I said "but what if when you are 6'2" and maybe 17 years old, Grandpa might start growing again and you won't catch up to me?" He thought about that for about ten seconds and said to me very seriously (somehow he has now morphed into the grandfather and is talking to ma as if I were his grandson). "Grandpa, that is not going to happen because old people don't grow." And he didn't say it as a wise guy or trying to be funny. He was quite serious and of course, accurate. I cracked up and still chuckle a month later.  

It seems that I have been surrounded by cancer my whole life and especially in the last 17 years since my daughter was diagnosed with TNBC at the age of 36. I have been privileged to help over 1000 people with various cancers during that time and I find that for my own well-being it has been helpful to try to find the beauty in each day. It can be a piece of music, prose, poetry, a movie, the smile of a loved one, or just the presence of a loved one. Or even a Zoom with someone new. I am truly blessed to be a patient advocate and the work fills my heart. 

My experience has been that people with TNBC may have a better quality of life if they can have a positive attitude and try to find the beauty in each day. I know it may be very difficult to do on many days but I would encourage all, here, to please try. 

Little lady you have, movingly, shared with us your two year journey to get to this point and I applaud you for making this first post. I believe that qualifies for the beauty in this day for you because you will be opening a caring world so that you will never "feel alone."

We 'get it' here and whatever you have gone through has been experienced by many and I believe you will see that over time, the folks here will show you that they care. The emotions are authentic and so are the wonderful participants here.

Welcome, little lady!!!!!

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 S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2021 at 6:26pm
Hello everyone. I’m new here today and unsure of how to navigate this forum, so please bear with me. I’m desperate for advice. I had TNBC Stage 1, Node Negative in 2016 with lumpectomy followed by 4 doses of Taxotere and Cytoxen and 36 rounds of radiation. Five months ago (Feb 2021) I was diagnosed with mets to bone, lung, and lymph. In the last few months I had 5 radiation treatments and 3 months of Taxol. My PET scan showed some improvement, but some worsened areas in my bones. Can anyone help me please? I’m terrified. I live in the Philadelphia area and don’t know who to turn to for a second opinion. Please help if you can. Thank you!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote littlelady Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2021 at 10:34pm
Hi S_pixiedust,

I am so sorry you are having to go through this.  Perhaps you can see another doctor in the Philadelphia area to get a second opinion.  Maybe Steve (Sage patient advocate) knows someone in the Philadelphia area that he could recommend.  

I hope things go well for you.  Keep fighting!


DX 1/19, age 48, IMC-38mm, IDC-5.1mm, stage 2, grade 3, 0/2 nodes, BRCA-, AC x4 (2/19), T x3 (4/19), BMX (5/19), T x6 (6/19), T&C x3 (6/19), X (8/19 - 1/20), IMRT Rads x36, K (2/20-1/21), CT NED 6/20
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 11 2021 at 10:49pm
Dear S_pixiedust,

I am sorry you have had such a tough journey.

I do know a Breast Medical Oncologist at University of Pennsylvania who is very familiar with TNBC.

Please send me an email to info@sagepatientadvocates.org and I can set-up a Zoom if you
are o.k. doing that. I would prefer that to a phone call but up to you.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 9:29am
Thank you so much for your kindness. I’ve never posted on any type of forum before, so I wasn’t sure if anyone would even notice. I am very grateful for your response and Steve’s response. I hope things go well for you. We’ll both keep fighting!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 9:36am
S_pixiedust,

Please reach out to Steve.  He is one of the most caring, kind and helpful member who has helped many of us navigate medical professionals in our area and getting second opinions.  I'm so glad to be able to call Steve my friend. 

Wishing you the best as you navigate treatment decisions.  Keep fighting!

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote S_pixiedust Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 9:59am
Thank you, Donna. I’m already overwhelmed by the kindness in this group. All the best!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2021 at 10:43am
I am sorry you are going through all this. I was diagnosed 2018 with TNBC. I was trying to navigate and decide what to do. I contacted the Cancer Treatment of America in Philadelphia, I live about 2 hours from there but in the end decided not to go there since I didn't want to do standard chemo for TNBC.  In all my research over the years TN has 4 subtypes and 2 seem to respond to chemo and 2 do not. I had my tumor tested by an integrative oncologist by a company called Caris Life Science.  I was lucky enough to see my subtype of TN on that report and that I would not respond to chemo, unfortunately it was after I did  4 weeks of IPT low dose chemo.  My dr. was not upfront about the report.  There are some facebook groups for TN also.  Some are all natural and some are not.  Seems a lot of things are supposed to help weather you do traditional or natural things.  I just found this on youtube recently and he was one of the best at describing the subtypes and things that might help. See if you can pull it up or google it. https://www.youtube.com/watch?v=rYrBgnFrU40&list=PLukQsnpSdOW5oYR9pOqMZXgbOIoGTYDds ; I don't know if the link will work but try looking it up on youtube. Cancer concepts and compliments.  Dr. Belanger Natural Therapies for TN.  Hang in there and I hope you find some help. xo

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