Had 1st appt w/ Oncologist need your thoughtsl

[JenniferAlice]

1)
From my biopsy tissue which contained only a 1.2 mm IDC surrounded by DCIS the pathology from the reference lab Phenopath in Seatle concluded HER2+++ on teh IDC. My local hospitals pathology lab concluded er/pr- on the IDC. I know that DCIS presents itself as HER2+++.

My surgery removed a tumor of size 1 cm IDC and My oncologist is having the HER2 and er/pr tests redone since she does not trust the results based on only a 1.2 mm IDC sample - any thoughts? Anyone heard of their status changing. What are my chances I am not HER2+++?

(It burns me that these tests weren't already redone - they will be hearing from me about how they dropped the ball which is causing me more waiting and anxiety. I will be gracious of course even though boiling inside).

2)
If my status stays as er/pr- and HER2+++ and since my tumor was 1 cm and I am node negative my Oncologist says we may have trouble getting insurance to pay for Herceptin since clinical trials were based on women with node positive or tumors > 2 cm. Anyone fought this battle?
She agrees that the European standard of care says chemo+herceptin for my case. How much does herceptin cost? Is it 3k a month? I have fought insurance before and won on things.

Thank you expert ladies for all you have written on this board. I must say that my onc appt went well. I was very knowledgable - did lots of reading on this site. She told me I knew more than most docs! I felt as if I was armed with enough info to be able to judge if she was the right onc for me and I believe she is - 35 yrs experience - wow.

Jennifer

[Marlys]

Jennifer,
Where are you located? I can't believe your onc is saying your insurance may not pay. Most of us diagnosed since May of 2005 and who are HER 2+++ have received Herceptin. I am on Medicare and Tricare For Life and they both paid. And yes it is expensive- anywhere from 3 to 5 thousand dollars depending on where you are. My tumor was 1.5cm.
Hope this works out for you.
LOve & hugs,
Marlys

[JenniferAlice]

I am in San Diego. The difference is your tumor was 1.5 cm mine was 1 cm - 1 cm is the cutoff for treatment ! So I am right on the edge of this thing - story of my life!

Thx-
Jennifer

[Becky]

I do not believe you will have any problem. There are women on this board with less than 1 cm who received chemo with Herceptin.

Have the oncologist go to bat already to request Herceptin plus chemo now so you can appeal now if necessary.

[Joe]

2 resources that may help:

1. Genentech's SPOC Program

https://www.spoconline.com/spoconline/herceptin/patient/welcome.jsp

2. Disability Rights Legal Center:

http://www.disabilityrightslegalcenter.org/about/cancerlegalresource.cfm/


Regards
Joe

[CPA]

Aside from the insurance issues, I really do not think anybody "dropped the ball".

Almost everybody has the pathology re-done after surgery to confirm the biopsy. Most likely, the lab determined your HER2 status by IHC from the biopsy specimen. I would guess that your oncologist will want the results confirmed by FISH. IHC is basically a test where special stains are used to stain the tumor cells... the pathologist looks at the cells under a microscope and ranks you from a 0-3 scale (or +++) based upon the cell appearance. FISH is a genetic test that returns a ratio relating to the number of HER2 genes present and is generally considered more accurate.

IHC is usually done first because it is quick and cheaper. FISH is more expensive and is only usually done to confirm a positive IHC.

[penelope]

You can get it. I had a 7mm and neg nodes tumor and they gave me a years worth of herceptin before it was even approved for early stage.


Insist on it.