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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2018 at 10:11am
Dear Deb,

Welcome to our wonderful, supportive family.

I am glad you wrote and have a suggestion. Please contact the hospital where you were treated and see if they have a Supportive Care unit. They should be able to make a referral to a professional who can give you some psycho/social support to help you with what you are dealing with. Ideally, someone who is an expert in cancer and the anxiety it can cause.

Please seek some professional help. There is no 'easy' here, from my experience but a good therapist should help.

with warmest wishes for as good a Thanksgiving for you as possible.

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 Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Nov 22 2018 at 11:29am
Dear Deb, I had some emotional unravelling after chemo - panic attacks, depression, some obsessive/compulsive behavior very uncharacteristic of me. It was the fallout of my body and psyche being assaulted over a period of a year with chemo, multiple surgeries, and fears about dying. I found a great therapist who helped me through it. Steve's suggestion is right on the mark. Please do reach out as he suggests, and I think you will find a caring person who can help.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Judi Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2019 at 8:20pm
Hi everyone, my name is Judi and I am a newbie here.  I was diagnosed last September with THBC. I started chemo right away. the first round of AC went well, never got sick just tired and no appetite.  By the second treatment my hair fell out by the handful, so I had my head shaved.  Didn't know that your hair kept you so warm, about froze till I found ski caps to wear, 
Then I was 1/2 through the 2nd type of chemo Taxal (?) when I got chemical inducted pneumonia, hospitalize for 2 weeks,  I was pretty much over the pneumonia when I had to go the ER for 18 hours as it came back. I am doing better, but still on oxygen most of the day. I need to rebuild my energy level.
I know all though I have had set backs, that I have had it far less than most, and for that I feel both grateful and sad for the others.
Hopefully I can have surgery soon to get this beast out of me forever.  My prayers and best wishes to all of you
Judi
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dharville65 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2019 at 11:15am

Hi All!  My name is Deanna and I was diagnosed in September with TNBC.  My BRCA is negative for mutations.  I am waiting to have surgery depending on insurance approval.  They have denied a bilateral mastectomy and will only do the affected breast.  I am in the middle of a battle with them right now for approval and a peer to peer will take place Monday, My surgery is supposed to be Tuesday.

Will follow surgery with chemo.

IDC grade 3 Stage 1b, 15mm lump.

My emotions run wild all the time.  I'm ready to get treatment started and the insurance company to approve the double mastectomy.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2019 at 11:26am
Hi Deanna,

I'm so sorry you are dealing with insurance issues.  It's not right, but many of us have had to battle them.  What is their justification of denying the bilateral mastectomy?  I was stage 1 and had no problem with insurance approving a bilateral mastectomy.  Hope you get the results you want and your surgeon is fighting the battle for you.

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 MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2019 at 9:38am
Hi,  Sorry to hear that your insurance isn't on board with the double mastectomy.  Did your Dr. suggest that this is what you should do?  I'm surprised that if this is what you desire to do that they wouldn't allow it.   I do not have the BRCA gene, I had tnbc Stage 3c with 3 underarm lymph nodes as well as my chest wall lymph nodes with cancer.  My Dr. told me that a lumpectomy was the way to go.  I had chemo first and then the lumpectomy.  I am now 7 years from diagnosis and doing great.  This is a very personal decision and you should be able to have the double mastectomy if you want.  When you get this diagnosis you should not be under this stress on top of it all.  Good luck.  
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dharville65 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2019 at 4:33pm
Doctor is fighting for me too.  They said they did not have all the information.   I know that did.  An ER doctor made the decision.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dharville65 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2019 at 4:35pm
Yes, doctor recommended it.  I was on board to get the bilateral mastectomy from the beginning.   I'm BRCA negative as well.  I'm fighting for my right to choose the treatment I want.   Thank you for support and your story.  Your story gives me hope.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote llkehm Quote  Post ReplyReply Direct Link To This Post Posted: Oct 31 2019 at 2:21pm
I am new to the forum and am writing on behalf of a 72 y/o friend treated with lumpectomy, chemo and radiation for HER-2 neg grade 3 invasive ductal cancer. Insurance refused to pay for an annual CT of chest, abdomen, pelvis because she exhibited no new signs/symptoms of breast cancer-this based on the Medicare National Coverage Determination. Is this standard ? Is it worth appealing?

thanks so much, Linda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Nov 02 2019 at 12:46am
Welcome Linda! It's true, no body scanning is usually done unless she has something unusual going on. With TNBC and lumpectomy they usually do mammograms every 6 months for at least two years. If she has dense breasts or lots of scar tissue from surgery or necrosis from radiation she could get a breast MRI once a year - mammogram once a year, MRI once a year, staggered every six months. If she does have any new weird body pain that persists for more than a week she could get some kind of scan. A year ago I got sciatica in my lower back. It was horrible and it didn't go away after a few weeks. My oncologist ordered a bone scan.Luckily it was all clear, further MRI showed it was just a screwed up couple of discs (surgery in February gave me much relief). I gotta say, I was right at my 2 year post treatment  mark and it was awesome to have that full body bone scan come up clear. I wish there was a test they could do for our peace of mind if nothing else. But with them costing like $5000, that's not gonna happen. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote WEIMMOM Quote  Post ReplyReply Direct Link To This Post Posted: Nov 06 2019 at 7:39pm
 Hi:  I have recently been diagnosed with stage 1, grade 3 TNBC.  I was fortunate to discover a 1.5cm lump just 4 months after a mammogram.  I had tests done, biopsy and mastectomy on right breast within 3 weeks of finding the lump.  I became septic 12 days post operative.  I have kidney disease (FSGS) and nephrotic syndrome, Rheumatoid arthritis as well as MGUS.  I see on most posts and articles that Chemo is recommended, however, my kidneys are already compromised.  I am also extremely anemic at 72.  Any one else ventured this road with the existing complications I have?  I just turned 63 (day of my results).  Through all this, no one checked my left breast and I kept pushing for an ultra-sound.  Finally my family doctor arranged one and today, I just received the results that I have an elliptical circumscribed solid hypoechoic nodule measuring 4 x 2 x 5 mm with mildly dilated retroareola ducts which there was no indication previously.  Since this cancer is quite aggressive and I have heard that there is a 30-40% risk of it occurring in the other breast, I am concerned.  Any suggestions?  Thanks and my best to all of you who are on this journey!  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dorothee Quote  Post ReplyReply Direct Link To This Post Posted: Nov 07 2019 at 10:44am
Hi everybody,

First I apologized about my english but I'm French so it's not easy for me

I'm Dorothée, i'm 45 years old. In June, I have diagnosed stage 4 grade 4. at the beginning, it was difficult to accept because i'm not so old, i'm marathoner, I ran all the time and suddenly i can't run a mile. Nobody in my family have never had a breast cancer... But i have no choice and i decided to face the disease. I would like to have informations and I want to know the treatments you have, in France I created my association and I fight to have immunotherapy. is it to use in the USA?
thks you
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mountain View Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2020 at 8:22am
What type of breast cancer did you a have?   Where are you located and where is this Herbalist located?  What did he give you take?  Very interesting..thanks
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Apr 03 2020 at 9:25am
Originally posted by dorothee dorothee wrote:

Hi everybody,

First I apologized about my english but I'm French so it's not easy for me

I'm Dorothée, i'm 45 years old. In June, I have diagnosed stage 4 grade 4. at the beginning, it was difficult to accept because i'm not so old, i'm marathoner, I ran all the time and suddenly i can't run a mile. Nobody in my family have never had a breast cancer... But i have no choice and i decided to face the disease. I would like to have informations and I want to know the treatments you have, in France I created my association and I fight to have immunotherapy. is it to use in the USA?
thks you


Bonjour Dorothée

I am not French but I have lived in France for about 14 years.  IN 2017 I was diagnosed with TNBC.  So briefly, I will describe my treatment to you.....  To help you decide whether my answer is helpful to you, I live in the Dordogne in Nouvel Acquitaine.

The medical protocol for me was as follow:
mammographie
biopsie
surgery
chimio (chemo x 6) a month after surgery
radiothérapie (33 séances) a month after the end of chemo
check ups by surgeon, oncologue and radiothérapeute once a year each, so every 4 months at the hospital
yearly mamo and écho

If you need more information do not hesitate to ask

bon courage!

PS Wrote in French to help the poster but I am sure we are all familiar with the terms used!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Eva  A Quote  Post ReplyReply Direct Link To This Post Posted: Jul 01 2020 at 11:46am
Hi Everyone.

I chanced on this while I was skimming through the internet on TNBC. 
I have already had my surgery lumpectomy and sentinel node biopsy. Currently recovering post op then I will proceed to chemo and then finally radiotherapy. I didnt know that there are different types of breast cancer until my doctor told me. So i have to explain to everyine why I need chemo to treat Stage 1 breast cancer. 
I am happy to fond this forum and I look forward to learning from the experiences of other warriors and survivors. 
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 01 2020 at 1:06pm
Hi Eva,

Welcome.  Like you, I didn't know there were other types of breast cancer when I was diagnosed.  When I told my friend I had TNBC, she said that's great, you won't have to take Tamoxifen.  Little did I realize, she was wrong saying it was good news.  You'll find lots of helpful information on this site and support from those in treatment and those who have finished treatment.

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 Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Jul 01 2020 at 2:01pm
Hello All!

I too, had no idea there was more than one type of breast cancer...I got tired of explaining why I needed so much chemo...I even had a coworker tell people, I was not even grateful to have stage one!  After I heard that and had tried to explain to this uninformed individual...I transferred my position far away from hers.  I had decided I could not fight cancer and fight her.  That being said...I stopped explaining it and just took care of me.  If people were really concerned...I would gladly explain and ask one thing in return...that they understood, cancer comes in many treatment options and to rest assured...your friend the patient..has researched a lot..because when we were first diagnosed..we asked the doctor, if it is stage one, why so much treatment! 

So, this site taught me and it helps family and friends understand our journey a bit better. Without  constantly asking...if it is early, why are you getting so much treatment!  Ugh!

Godspeed all!
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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 2:17am
Hello Everyone!

I posted many years ago here.  But because mine was unusual I just fizzled out.  I was diagnosed April 2012 with Triple Negative DCIS with micro invasive BC.  2 years after I went to John Hopkins for a new Dr. & they found a fully invasive spot of 1.5 mm after rereading my post surgicle biopsy slides.  It would not have changed my treatment of partial mastectomy & 33 rounds of RADS.  My tumor was 2.8 cm grade 3 with necrosis, Lobulization, & SNB was negative for cancer.  I was 45 at DX & with a BRCA 2 variant that was pollifavorism. 
So fast forward to today October 5th the day before my next biopsy same breast & same area as last time.  I have been watched every year with a MRI in October & a mammogram in March for the past 6 years.  They found a 3 mm spot 2 weeks ago & will have a MRI guided biopsy tomorrow.  
I had Thyroid cancer over 2 1/2 years ago also.  I’m hoping 3 rd times not the charm!  I’m scared!  What are the facts with TNBC recurrence?  
Thank You for any help!  My feelings are all over the place now!

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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Post Options Post Options   Thanks (1) Thanks(1)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 8:22am
Dear Julz,

It's 4:50 a.m. in California as I start to type this reply. I was asleep when you posted; sorry for delayed response.

A study by MD Anderson Cancer Center in Houston mentions that the first five years after diagnosis is a important milestone. If your cancer has not recurred within the first 5 years the odds are substantial that it will not recur in the next ten years.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765226/

So a question for you...you wrote "I had Thyroid cancer over 2.5 years ago also." Was 
it determined by biopsy that your thyroid cancer was primary thyroid cancer?

This Chinese study shows that thyroid cancer that metastasizes from the breast is extremely rare but it does happen-

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5870294/

I have read different studies that the chances of TNBC recurring in the first five years from date of diagnosis are 40-60%, depending on the Stage when first diagnosed and also if chemo is given on a neo-adjuvant basis and there is a poor Pathological Complete Response (PCR), recurrence may be higher.

Please don't take my word for any of the above. You need to have the conversation with
your Breast Medical Oncologist.

It is hard to answer your question re: TNBC recurrence because research in the last decade has shown that there are at least six types of TNBC so hard to determine recurrence 'facts.' 

We all wish you good luck with your 'MRI guided biopsy.'

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 Grace Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 5:40pm
Hello, my name is Grace, I'm a 46 year old who has just been diagnosed from a breast lumpectomy last Tuesday that I have Triple Negative Breast Cancer. I'm in a state of shock as the Mammograms were negative, and u/s radiologist thought is was a 1.7 cm fibroadenoma. He stated that it is a mixed ductal and lobular pathology. I'm waiting for a call from an oncologist and he said next step is to make sure margins a clear & take a lymph node for staging. Looking forward to any and all advice from you all as I start this cancer journey.
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