Could Everyone Please Post What They Hav

Peach,

Hi Lucky -

On my initial dx, I had infiltrating ductal carcinoma (also called invasive) on my left breast and DCIS on my right.   I also was a Grade 3 for everything.

15 mos later, I had a recurrence of the invasive, mets to liver and unrelated kindey cancer.  After that I found out I'm positive for the BRCA1 mutation.  But, I've been NED for bc for 1 year and NED for kidney cancer for 3+ months!

I can imagine your frustration with having such a rare type of bc ... I felt that way being BRCA1, triple negative with mets ... but I've found others with that ... and I have to say that your posting of your specific type of bc is the first I've heard of it.   As someone else asked (and forgive me if I missed your response), is it a sub-type of one of the more common bc's?

Just want to correct some info that was posted:
BRCA1 - approx 80% triple negative
BRCA2 - approx 80% hormone receptor positive and only 20% triple neg

CalGal

I was diagnosed with atypical medullary breast cancer. I haven't heard of your type but I do wish you much success in your battle.

Edited by momtopebbles - Jun 22 2007 at 2:54pm

Hi Bunnysmama -

Here's the (long) answer to your question, "How was it determined that the liver was due to mets but the kidney was unrelated?"

- Oct 2005 - Mamm allegedly fine (6 mos later, after the "lost" mamm's are found, even I can see the 2 cm lump that the radiologist missed).

- Dec 2005 - I found a lump ... a few days later determined to be recurr bc.   I had to ASK for a CT scan (never got one on my initial dx and later denied due to the allegedly fine mamm) ... that showed uptake in the breast, liver and kidneys.  A later PET scan showed the same.  My breast surgeon initially offered a liver biopsy, but then reneged after the PET scan.

I did a ton of research and it was quickly evident that that there was no overlap in treatments for breast cancer, liver cancer and kidney cancer (just in case I had three primary cancers, which I later learned I did not, only two).  Of the three, the liver was the most serious and needed to be addressed first.  While the tumors on my liver were most likely bc mets, I needed to be sure before starting chemo ... and with the kidney cancer, it could also be kidney mets - although unlikely. 

I had two outside consultations (USC and City of Hope).  Both doctors were shocked that my HMO wasn't going to do a liver biopsy and said that it was "mandatory".  I took that back to my HMO and got the liver biopsy, the pathology of which confirmed that it was met bc.

Of course, all of this took time, getting records, getting appts and then later the liver biopsy and the results.  Believe me, I was calling as much as I could w/o being obnoxious.  In that month delay, the breast tumor grew from 2 cm to 3 cm to where it was a visible lump protruding that was extremelly unnerving and distressing  for me ... I knew the cancer was growing unchecked.  I was thrilled to start chemo on 2/1/06.

I guess the doc's went on probability re: the kidney cancer ... as it is NOT a location that bc metastisizes to ...  and believing that it was kidney cancer (of which I have NONE of the risk factors for), it tends to be slow growing, so we needed to go after the bc and bc mets to the liver first.

To complicate matters, the kidney cancer was in a very tricky, difficult location.  The normal treatment for kidney cancer is the removal of 1/2 or all of one's kidney; most of the time thru laprascopic surgery.  Due to the location near my aorta, I was not a candidate for lap and really didn't want to lose half or all of my left kidney anyways.

I ended up getting RFA (radio-frequency ablation) of the kidney cancer in March this year through my new PPO!   (Last year, the RFA finished off the chemo-reduced liver mets).

CalGal

Hi Bunnysmama -

No apologies needed ... as both my onc have said, I have a very unusual and complicated dx ...

9/04 - 2.2 cm IDC on the left; DCIS on the right
10/04 - Bi-lat lump's, SNB - all clear!
11/04-12/04 - 38x rad'tn on the invasive side

10/05 - Mamm (showed lump, but rad missed it).  When I met with my surgeon I asked to see it, but he had not seen it and said it was fine but he would look at it.  
12/05 - I found the lump, determined to be recurr bc.  I again asked to see the mamm and now it was "lost" after being in my surgeon's office.  I again asked for a CT Scan and got one ... I only figured I had more bc and really the correct thing would have been to ask for a MRI ... but I also kind of thought that I should have had a CT on my initial dx.  CT scan and then later, a PET scan both lit up in the liver and kidneys.  The kidney cancer was referred to as an "incidental find" ...   The real advantage was that both my liver mets and kidney cancer were found early, while asymptomatic.

2/06-4/06 - 6 dose dense AC.  Tumor responded immed.   After 3, it was gone, but I pushed it to 6.  Positive for BRCA1.
6/06 - Radio-frequency ablation (RFA) of liver mets.  The liver mets were the most critical part of my dx ... We had all agreed to "watch" my kidney ...
8/06-11/06 - Despite being NED for bc, I did 5 Taxotere & Carboplatin.

3/07 - RFA of my kidney.

Again, I did a ton of research and my treatment was not what was proposed by my HMO.  It would have been 4 AC, then 4 Taxol.  Plus, I had to fight to get RFA of my liver mets ... and they would have never done it for the kidney cancer.   But, due to my emplyer's annual "open enrollment" I was very fortunate to be able to change insurance, effective 1/1/07.

CalGal

Hi,  I was diagnosed with IDC Stage II, trip neg, 2.4 cm tumor, on June 12, 2007.  I had excisional biopsy on June 5, 2007 with positive margins.  I have sentinel node surgery on July 2, 2007 and they are going after clear margins, then I start chemo, then 6 weeks of rads. Because I am trip neg, the Dr's said there is no further treatment after chemo and rads., this is correct? Thank you for any responses Charlene

Hi Charlene,

Hi,

Back in 1992, when I was diagnosed with breast cancer at the age of 37, no one knew anything about triple negative breast cancer (or even taxol!).  My cancer was triple negative, invasive ductal, Stage II, Grade 3, 1.6cm and 7 positive lymph nodes.  All of my prognostic indicators but one were negative (they didn't know about HER 2 neu status then either).