ladies I need some advice

Hi ladies,
this is my first time posting and I just need some advice. I am scheduled for chemo this Friday and very confused. I have seen three oncs all have differing opinions and I am forced to go with one as that is what is covered by my insurance. Here is the jist...
I am 35 with a grade 2, SBR score 6, er<5% pr- , her2+++by IHS, 7mm, negative nodes and vascular/lymphatic invasion. I also did not have any cell necrosis or perineural invasion. Sounds pretty good to me ecept everyone is freaking out on me.

The first onc suggested ACx4 or FEC but did not offer stats on either and at the time I did not know any better. She also said that hercepting "would almost certainly not be paid for by insurance."

The second said ACx4 ofr FEC and said that FEC was 59% and AC 47%. I asked her which one she would do and she got mad and said that it wasn't a fair question.

The third said ACx4 +T and herceptin. I liked the sound of that, but my insurance will not pay for him.

This is where I need advice..... Which regmine is better for her2 tumors? Is herceptin only effective in combo with chemo or can I have it after FEC and if so how does it affect its effectiveness. I have hear that herceptin is 50% effective when it is given in combo with chemotherepy. Everyone seems to be having AC.

The second is the way her2 was tested. I have heard that IHS is not very accurate. The second onc said that there was a 10% chance that I would turn out negative on as FISH test. There seems to be a strong corrolation of grade 3 and a high mitotic count with her2. I am a grade 2 and have alow mitotic count, 2/10HPF. I have taught high school biology for 4 years and have a good understanding of what a high power field is and how many human cells can be seen in it...it's about 100. That means they could only see two dividing in each field. Dare I hope? The test would probably cost me money out of pocket.

If you have taken the time to read this I thank you. Any help anyone can give would be greatly appreciated.

By the way does anyone know if you test estrogen + at all (1-4%) is that considered estrogen + or is it consided negative?

hi Prayer--
I didn't completely understand all the abbreviations you used, but I would love to help you. Call me if you'd like -- home 920-727-9433, cell 920-427-9300--then I can give you my opinion, for what it's worth. I'm in Wisconsin, so up until 10pm, central time, evenings or cell phone between 7 am and 10 pm, central time.

Don't give up if you think your insurance company won't pay. I wrote an 80-page report, spiral bound, copied to 12 people, both within and outside of my health plan, to convince them that I needed to go to an out-of-plan provider for my radiation treatments. I got my way, and furthermore, the HMO is now sending other women to this provider. So it does pay to present your case--be sure you have the data to support it :-)

If you don't have the time to call me, please go to the resources section of this website and read up on everything. If you are her2+, Herceptin is a literal life-saver.

Good luck!
Val

Hi Prayer,

It seem that adriamycin is a really aggressive drug for Her2+++ tumors. So the ACx4 and Tx4 with Herceptin is probably the best. You mentioned in your tumor pathology that you are node negative but you do have vascular/lymphatic invasion. Is that correct? If so, as my doc put it, "even if you are node negative, we still worry when you have vascular/lymphatic invasion". I would absolutly have your tumor tested again with the FISH test to make sure you are indeed, Her2+++.

thanks for your replies. Actually there was not vascular/lymphatic invasion. I was lucky. The problem is that I am only being offered AC+T by the onc that my insurance won't pay for. I have thought about fighting it with the insurance co but I am 11 weeks past surgery and I have heard that they want you to have treatment within 6 weeks. I am late due to a implant infection that I was fighting. I eventually lost the implant just to make things worse. If I fight the insurance co I will have to wait at least another 3 weeks for treatment. See what I mean. This decision is so hard.

Hello Prayer,

At what point would your insurance be willing to pay for Herceptin for anyone? Would they pay for you to get Herceptin if you pay out of pocket for the FISH and turn out to be strongly positive?

Was your test done in a major central lab that does the test frequently and routinely, and not by a small lab that only does a few now and then?

Herceptin is very expensive and shouldn't be given to anyone who is not genuinely HER2 positive because it can sometimes cause damage to the heart.

As Karen said, Adriamycin is favored for use for HER2's. You should be tested by FISH so you have enough information to make a good decision about which chemo to have.

AlaskaAngel

Prayer
First you need to understand that Breast CA is a systemic disease no matter what kind. At 35 you are probably ER +. YOUR BIOPSY REPORT SHOULD TELL YOU YOUR ER/PR status either + or -.
A/C did not work for me at all. I continued to progress with fluid in my lungs . I was DXed with HER2+++ BY THE IHC test and never was tested by FISH. It proved to an accurate test in my case. At this point we have very little tehnology to detest mini-mmicro-bc cells circulating in our afflicted body. If your Onc will give you the protocol with Herceptin/Taxol sfor 6 mos to a yr. a
ACCORDING TO THE RESULTS OF THE CLINICAL TRIALS FOR EARLY STAGE bc, TAKING Herceptin and another chemo for 6 mos to a year can prove to be an advantage by lowering the risk of recurrence.

There is evidence also that Adriamycin and Herceptin should not be taken together as it msy cause heart damage, Hercetin has a very low risk of any side evffects. I have had a good quality of life for 6 yrs on herceptin tx's as recommended for a stage 4 survivor to maintain my NED status. (no evidence of desease)

Hope this info helps. Do some research on Asco '05 Conference.

Hugs, Christine

The advice her about Adriamycin and Herceptin may be confusing. My understanding is that Adriamycin IS generally considered to be better for treating patients who are HER2+++, but simply not given at the same time as the Herceptin. Herceptin is given with a taxane, or else alone.

Prayer
My opinion for what it's worth. Start with the A/C now. You'll have 4 treatments probably every 2 weeks, followed by 4 of Taxol. That would buy you some time to " haggle " with the ins. co.( aren't they fun ??) about paying for your herceptin. I don't think your oco should have told you that they probably wouldn't pay - you just don't know with some of them. Mine are as tight as they come and I've had several confrontations with them over the years, but they are paying for my herceptin for at least a year maybe longer.
I've read that if you are indeed her2 positive, that based on that very encouraging clinical trial completed in April, that you should be probably receivimg Herceptin. Did I missread your message in stating that your tumor was 7mm ??? If so, with no node involvement, sounds like you should do well.
Sometimes it gets very confusing with more than a few opinions- then they usually leave the pateint to make the decision.
RE; asking your oco what she would do and her reply !!! Mine said it was a tough question but she would have done the same -- starting herceptin treatments.
Good luck-- you'll do fine
Carol

Hi Prayer:

Your case sounds extremely similar to mine-
I completed my dose dense AC + T (4 rounds of AC every 2 weeks and then 4 rounds of T every 2 weeks). I could not find anyone to give me Herceptin. Once the ASCO conference was complete, I then was able to receive Herceptin. I had to go to another oncologist for the Herceptin because the one that gave me chemo kept telling me that my ins would not pay. I did not believe him without any paper evidence from my insurance company. Turns out my ins does pay!
If your onc is within your insurance network and since herceptin is FDA approved, more than likely it will pay.
Get on the phone and talk to your carrier- most of them will inform you on the phone whether or not you are covered. Herceptin is no longer "experimental". It is FDA approved. Most insurances look at whether the drug is FDA approved for payment regardless of your Stage.
Otherwise find a doc who will give it to you and is still be in your network...
What kind of insurance do you have? Mine is BC/BS of Fla.

Maria