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-   -   ER-/PR- HER2 staging poll (https://her2support.org/vbulletin/showthread.php?t=25028)

astrid 08-17-2006 01:35 PM

ER-/PR- HER2 staging poll
 
There are three polls now. This one is for ER-/PR- HER2

chrisy 08-17-2006 01:49 PM

hi Astrid,
Thanks - much closer for me to be able to figure out how to answer!

One thing that this will show that would change if you redo this a few years from now (although after all this work, WHO would want to do that!) is I imagine you will see a number of early stagers with metastasis on these polls. With adjuvant herceptin, these should be cut in half!!! So early stagers should not be as afraid as their prognosis is much better than it was a few years ago.

Thanks again for all your efforts to design this - it's really good information.

penelope 08-18-2006 09:26 AM

Astrid thank you for taking the time to set this up. I am very confused by the poll. How can you be stage 1 and stage 0 at the same time? Also wouldn't every one that has matastisis have been a lower stage except those who were originally diagnosed as such? There for the results are hard to assess. The poll does not allow us to determine who was more likely to reoccur given the way the question was worded.

tousled1 08-30-2006 12:30 PM

Appears that the majority were initially Stage II or Stage III with node involvement. I'd be interested to see the breakdown for Stage II and Stage III.

Nancy L 11-19-2010 05:00 PM

Re: ER-/PR- HER2 staging poll
 
Category 6 is puzzling to me. If your BC returns, you are automatically stage IV. To my knowledge, it is not possible to be stage 1 for example, and later be diagnosed stage 3.

Just curious---do you plan to publish the results?

DianneS 11-19-2010 07:47 PM

Re: ER-/PR- HER2 staging poll
 
What about those who are weakly ER positive? Which I am....

Dianne

KDR 11-20-2010 06:54 AM

Re: ER-/PR- HER2 staging poll
 
And I am weakly positive PR.

kiwigirl 11-20-2010 01:07 PM

Re: ER-/PR- HER2 staging poll
 
I'm weakly er positive but was told if its is under 5% then it does not count as being er positive.

DianneS 11-21-2010 12:27 PM

Re: ER-/PR- HER2 staging poll
 
KDR and kiwigirl,

did you get herceptin from the beginning of dx?

are you taking any hormone therapy such as tamoxifen or ai's?

I am not. But I am taking stuff from my naturopath such as quercetin, idole 3 carbinol (I3C) resveratrol and a host of other supplements which are supposed to function as hormone blockers, or ai's.

dianne

kiwigirl 11-21-2010 02:32 PM

Re: ER-/PR- HER2 staging poll
 
I had herceptin from the beginning with doxirubincen (taxane) I have not been given any ai's or hormone blockers.

I take Co Q10, Omega 3, Vitamin D and baby asprin. During radiation i took resveratol.

KDR 11-21-2010 02:38 PM

Re: ER-/PR- HER2 staging poll
 
Yes, I started Herceptin with Taxol. I do not have any other therapy. I take Vitamin D, 2000 mg. daily and 50 mg. Vitamin B6 for neuropathy.

ElaineM 11-21-2010 03:43 PM

Re: ER-/PR- HER2 staging poll
 
I hate to confuse the issues, but ER,PR, and Her2 status can change over time in addition to stages. A person can start off with one set of sats and have different stats a few years later.
Not only that, but a person can be ER,PR,Her2 positive in one breast, but the other breast might be totally different, even at the same time. It happens !!!!!!!!!
Good luck with the poll.

NanaJoni 11-21-2010 04:25 PM

Re: ER-/PR- HER2 staging poll
 
Elaine - so true. I had two tumors that were only about 2 cm apart. The larger one (2cm) was triple negative and the smaller one (1.8 cm) was er-/pr-/HER2 +++. So my chemo regimen was TCH (taxotere/carboplatin/Herceptin) and I'm continuing the Herceptin for the one year.

DianneS 11-21-2010 06:43 PM

Re: ER-/PR- HER2 staging poll
 
I wonder what the prognosis is for us weakly ER+ women?

Have there been any studies?

Also, what constitutes weakly? Less than 10%?

I live in Canada and they don't do % here, at least in British Columbia.

Debbie L. 11-21-2010 07:07 PM

Re: ER-/PR- HER2 staging poll
 
Dianne, I don't know that it's specific to Canada, that ER/PR lacks accuracy. My pathology (at a community hospital in California) was ER/PR negative on a large axillary node that was done first, then 5%/1% on the occult breast tumor. It took me two years to gather the gumption and figure out how to have that rechecked. I sent my slides and blocks to Baylor (Texas) for a second pathology and once I hooked up with them, the rest was easy (and inexpensive). Maybe that's an option for you?

Debbie Laxague

Unregistered 11-21-2010 10:07 PM

Re: ER-/PR- HER2 staging poll
 
Thanks Debbie. I don't know if sending it to Texas would change anything for me. I had it checked twice here in Canada. The first time it came back ER-. The onc I had initially had it rechecked and it came back weak positive. This same onc said I needed to start hormone therapy - for a weak er+??? The 2nd onc said it would only be a 4-6% advantage. Given my side effects after I began the dang things I opted to quit.

There doesn't seem to be any agreement on what actually constitutes a weak er+; it varies depending upon where you live. Seems a bit loose.

Glad you had yours rechecked.

D

DianneS 11-21-2010 10:09 PM

Re: ER-/PR- HER2 staging poll
 
Aw, this silly computer! I am the 'unregistered guest'. I typed in my name and thought i was registered...sorry Debbie.

Dianne

Lien 11-22-2010 12:23 AM

Re: ER-/PR- HER2 staging poll
 
I was stage 1, ER+, PR+, Her2+
Am I the only one?

Jacqueline

atdec05 11-29-2010 07:48 AM

Re: ER-/PR- HER2 staging poll
 
Nancy L,

It is possible for bc to recur and not be metastatic.
I was originally stage 1b, had a local recurrence and now am stage 3b.
I don't see a place for me on the poll!

Lien 11-29-2010 08:08 AM

Re: ER-/PR- HER2 staging poll
 
You can recur in the same or contralateral breast. That's not considered metastatic. So to answer your question: Yes.

Jacqueline


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