Help me Understand?!?!

JWallace

Hello to All,

It's been a few months since I have been on the discussion boards.  I have a long story so if you have time please read and advise if possible.  My mother was diagnoised with Stage 3A breast cancer in October 2007.  Doctors said she was ER-, PR-, and Her2+.  She did chemo every 3 weeks where she had taxol and another drug that I can't remember.  And she did herceptin.  In April of 2008 she had a mastecomy with reconstruction surgery done together.  In June of 2008 she felt another lump in the same breast and YES it was cancerous.  She had all of the other tests done to make sure it was no where else in the body (PET scan) and she was in the clear.  It was a regional recurrence I guess you can say.  The doctors then go on to tell us it is the same cancer.  We were then advised by the same doctors to get a second opinion.  We did at Johns Hopkins and they found that the second lump was ER-,PR-, and Her2-.  But they said it was the same cancer from her previous one and that there could have been a mistake.....How could this happen??  So now she is going to do Carbo&Taxotere&Herceptin. Has this ever happened to anyone else?  Also if anyone has had this what are the side effects?  Thank you in advance for reading!!!

FloridaLady

JWallace,

I've heard a lot of ladies have issues with getting the correct Her2 status.  Your doctor must run additional test. One most used is a FISH test.  I'm Her2++ and still considered Her2 negative.  I think it was a good thing that that used Herceptin.  There is still talk that this might be good for some of us TN. My doctor has check my Her2 status with each recurrence hoping I will be Her2 since I do not respond to the normal chemos.  My ins. will not pay for it.

What I don't under stand is...If JH is saying she is triple neg now...why are the wanting to give her Herceptin again? Normal protocol for TN does not include this drug.  But Carbo and Taxotere are good TN drugs.

I hope you get some good answer on why they want Herceptin again if she TN.

Flalady

Shirlann

Oh yes, mistakes happen quite frequently.  The whole medical system has problems, and sometimes it is a mess.

But take heart, when I was diagnosed in 1997, they did not know much about Tri-Negs, so they didn't hardly mention it and I didn't have chemo, just a lumpectomy and rads.

Since TriNegs are typically unusually aggressive, it sounds like just a recurrence.  This is much better than a metastasis.  While you will all slowly go nuts, having to treat this again, your mom is no worse off now than she was at her original diagnosis, as far as her life is concerned.

Also, and I know you know this, John's Hopkins has one of the finest cancer centers IN THE WORLD.  Trust them, your local pathologist either missed the TriNeg or never tested for it.

My bunch of idiots thought I had Lymphoma.  It took them 3 months to get through a ridiculous round of tests, end to end, of course, and then they had the wrong diagnosis.  Somewhere, in that group of morons, was one person who had the sense to send my slides to White Plains, NY, where they finally found I had Medullary Breast Cancer, a small sub-type, or I would have been treated for Lymphoma..

I was so disgusted I went to UCLA, and they confirmed the Medullary, so I was good to go.

Don't ever think that every facility or every oncologist or every hospital are the same.  Vast differences.  Be very thankful that somehow, you got to the best facility for cancer in the universe.

Maddening, but true.

Gentle hugs, Shirlann