I need some advice, please....

It is a long miserable story...but I was just recently diagnosed with triple negative breast cancer. I have many questions that I will try to discuss some other day...but my first is to ask what others would do in my situation. I had a lumpectomy a couple of weeks ago (and lymph nodes were reportedly negative)....but the surgeon completely missed removing the tumor. I have been told repeatedly that he is the best surgeon in town. Do I return to him for the second surgery to hopefully remove the tumor this time...or do I find another surgeon? I would really appreciate your thoughts and comments. Thanks. Xena   

Thank you so much for responding. I am feeling terribly alone and really don't know what to do. I am new at this game. The community is large enough...there are many other surgeons. I know nothing about any of them...but the original surgeon came highly recommended by numerous people. I was initially "marked" for surgery by U/S at the physician's office....which was unfortunately cleaned off by Nuclear Medicine at the hospital. Immediately before surgery...when it was noted that the mark was missing...the surgeon's NP whipped out her marker...and drew an "X"...which is where the surgery was performed. Unfortunately, the mark was in the incorrect place. When the pathology report finally came back after nine days...the surgeon stated that he didn't find the biopsy edges during the surgery.   

Xena -

That's really scary. It sounds like you suffered through a needless surgery. A suggestion: tell us where you live. I'm sure we can suggest our own surgeons if it's nearby.

Even with a small tumor and negative nodes, you should undergo chemotherapy as cancer cells can shed and travel through the blood. They don't need nodes to spread. Get yourself to an oncologist you specializes in BC. You won't find one specializing in TNBC.

You also have the right to request that your tumor sample - when you have a proper one - is viewed by a second pathologist. Make sure that you're tested for HER2 status using the FISH test. The IHC test is not good enough.

The initial dx is overwhelming, scary and isolating. I cried for days. Then I got to a point where I realized that I had to be my own best advocate. The crying stopped, I did my research, found a good oncologist that I trusted, and began chemo. Now I'm almost done and while I've come to accept the possibility of recurrence, I know that I have to resume living my life as if there's no cancer at all.

You may feel alone, but please know that you are not.

- t.

You may want to post on the Young Survival Coalition message board (www.youngsurvival.org). There are several women from Richmond and from Va. on the board & they're all very helpful and kind.

- t.

HI, I'm a brand-spanking-new newbie on this board. Just learned I am a triple-neg BC girl too, 7 mos. after diagnosis, same day I had my port removed (bad omen).    Anyway, my surgeon put a wire through my tumor with ultrasound assistance prior to surgery. That way she could find it easier. She is a breast cancer surgeon specialist in Seattle, WA. I am lucky I live close to many great cancer centers.  But if I were you I would travel as far as you need to go to seek a BC Surgeon.   

Like so many other posts I read - I had to discover on my own the significance of Triple-Negative status, tracking down my own Pathology reports on my own. Doctors never even mentioned that I was a 3-Neg or my survival odds would diminish.   I was always told after lumpectomy, chemo and radiation I would be at a nice shiny 92% survival rate.

NOW I'M A FREAKING!

Good Luck,

Teresa J.
DX 2-21-07
Lumpectomy 3-18-07
Chemo T/C x 4
Rads 36 - completed 8-31-07

Hello to the other Theresa!

Yes, TNBC is scary and yes, it's damn important to arm yourself with a ton of information.

But, my father was dx with lymphoma way over 30 years ago when he was 19. He truly had no idea that it could come back. That said, he moved on, lived his life, never gave cancer a second thought, and it never came back. In light of my dx, he called his ignorace a blessing.

I don't necessarily believe in mind over mater - seriously, if it came down to that none of us would be here - but I do think that it helps to live each day as if you're in the "shiny 92%" rate. Nobody knows how long they have, so be good to yourself, to others, and most of all be happy.

- t.

Hi Xena.  I had wire localization for my lumpectomy.  This was done with mammography.  My docs are at a NCI comprehensive cancer center and I would suggest to go to one.  Here's a link to the listing and I believe there's one in Richmond.

Hi Xena,

Hello Teresa J, I wanted to wish you a warm welcome and I'm so sorry you have had breast cancer.