New Posts New Posts RSS Feed - What if I have been misdiagnosed as having TNBC?
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

What if I have been misdiagnosed as having TNBC?

 Post Reply Post Reply
Author
 Rating: Topic Rating: 1 Votes, Average 5.00  Topic Search Topic Search  Topic Options Topic Options
Plume View Drop Down
Senior Member
Senior Member


Joined: Jul 15 2018
Location: France
Status: Offline
Points: 113
Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Topic: What if I have been misdiagnosed as having TNBC?
    Posted: Jul 22 2019 at 10:10am
Maybe this is just wishful thinking on my part! BUT......I have recently read that TNBC can be overdiagnosed and there is a recent case in a British newspaper of a young mother who was misdiagnosed and had a double mastectomy plus the usual chemo/radio combo.

My story is this:  I was 67 when diagnosed, had a mass in my left breast which, after mammo and echo was subjected to a needle biopsy.  The biopsy was triple negative, the tumour was about 2 cm.  Had scintography, partial mastectomy, removal of 2 sentinel glands.  Lab results same as for the biopsy pre surgery.

All that was in 2017 and today, I have returned for my 2nd anniversary mammo; all normal as before.

So, am I just lucky or in fact never had TBNC in the first place?

Note:  I do not fall within the usual age range for this cancer, I have no family history of any sorts of cancers, I am Chinese (so ethnicity in the low range), cancer was diagnosed as Stage 1, no node involvement, not overweight, very active physically, didn't feel ill throughout other than from the effects of the chemo and radio.

I am NOT losing sleep over this.  If I was misdiagnosed, then so be it, not looking to sue anyone and not filled with regret over anything.  I am just putting forward this possible scenario in case anyone else out there have any sneaky suspicion about a misdiagnosis and may wish to get a second opinion.

As for me, I was frightened out of my wits and the doctors wanted to act quickly so I agreed to all of their suggestions!

Any thoughts, anyone?
Back to Top
Kellyless View Drop Down
Senior Member
Senior Member


Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1154
Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2019 at 11:42am
I read that article about that poor woman in Britain, just tragic. From the moment I read it I knew women all around the world would be having the same thoughts you are. 
First, the vast majority of TNBC patients have no obvious "risk" factors - it's 100% not their "fault". No genetic mutation, not fat, lazy, drunks, drug abusers. There's no "normal age range", although if a young women has breast cancer it's more likely to be TNBC. But it's not uncommon for elderly women to have it. I will say that again - the vast majority of TNBC diagnosed women have no known "risk factors" other than being female with breasts. in MOST women, genetic mutations are rare. 
This One Story about a tragic misdiagnosis made the international world wide news because it's so extremely rare for it to happen. In your description Plume, you say that you had not just a biopsy declared triple negative, but surgical pathology as well? That would mean a mix-up happened twice - two separate pathology workups on different tissue samples, at different times, mis-read, but for the same person. That would be extremely rare X 2? 
You ask if you were "just Lucky" to have survived? You did surgery, chemo and radiation - the majority of women that have TNBC and do that treatment are cancer free and survive - MOST women that do what you did live, never recur. I wouldn't call that lucky. What the stats on TNBC say is we are more likely to have a recurrence than patients with ER/PR + patients. The stats do not say most of us are going to recur or die from the disease, they say we are at higher risk of it. You fought the good fight, subjected yourself to all the treatments that improve your odds of survival....I'd day you fought hard and it's worked so far - I wouldn't chalk that up to "luck" . The reason we put ourselves thru all the grueling treatment is because the higher than normal recurrence chances are not recurrences in the breast, it's recurrences elsewhere, stage 4. Most of us never see stage 4.
Anyone that's been around here long at all has read the constant suggestions to get second opinions. FYI - when you get a second opinion from another cancer facility, make sure to ask for a FULL second opinion. Ask that your actual pathology be sent to the 2nd clinic or hospital to be included in the second opinion. Have their pathologists do the full workup and do a new pathology report. I did that both times. My slides and such were sent to my second opinion facility for a full read. That will give you extra peace of mind. 
Congratulations on your 2 year anniversary NED! Enjoy it, try to not dwell on the "what ifs", especially about something that would be hugely less likely than a fully treated TNBC patient surviving recurrence free for the rest of their lives.
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!
Back to Top
Plume View Drop Down
Senior Member
Senior Member


Joined: Jul 15 2018
Location: France
Status: Offline
Points: 113
Post Options Post Options   Thanks (1) Thanks(1)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2019 at 3:27pm
Kellyless, what a marvellous reply; thanks a million.

YES, I do feel enormously comforted and you are right about the lingering guilt that it was somehow my fault.

Actually, I doubt I would have asked for a second opinion.  Everything happened so quickly and I just wanted to have the cancer dealt with pronto and didn't want any messing about or any delay.

I have an excellent cancer team and the treatment protocol followed all the latest guidelines.

I have also recently had a scan of my lungs.  My longstanding asthma is usually reasonably well-controlled but the year after cancer treatment, I had nothing but one lung infection after another and a cough that pretty much permeated every aspect of my life.  It got so bad that I told my doctor I'd rather have the cancer back than the debilitating lung problems!!

The scan showed some emphysema but crucially NO cancers.  I am just about finishing with "respiratory" physio and hope to regain strength and energy.

Tomorrow, back to the surgeon and I feel up for it and not worried.  I can't thank you enough for your reply.  You know, sometimes we do in our heart of hearts know the truth of things but it takes a timely reminder from someone else to point it out.  Certainly, we all deal with TNBC in different ways and my way was to treat it as no big deal, it's just a blip and doesn't deserve too much emotional investment.  So, you see, I wanted to believe that somehow someone somewhere made a mistake and I didn't have it after all!    

Back to Top
 Post Reply Post Reply
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 12.01
Copyright ©2001-2018 Web Wiz Ltd.