ER-/PR- HER2 staging poll

[astrid]

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

[chrisy]

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]

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]

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]

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]

What about those who are weakly ER positive? Which I am....

Dianne

[KDR]

And I am weakly positive PR.

[kiwigirl]

I'm weakly er positive but was told if its is under 5% then it does not count as being er positive.

[DianneS]

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]

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]

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]

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]

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]

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.]

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]

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]

Aw, this silly computer! I am the 'unregistered guest'. I typed in my name and thought i was registered...sorry Debbie.

Dianne

[Lien]

I was stage 1, ER+, PR+, Her2+
Am I the only one?

Jacqueline

[atdec05]

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]

You can recur in the same or contralateral breast. That's not considered metastatic. So to answer your question: Yes.

Jacqueline

[Ursula]

How do you define weakly positive, where is the borderline in general? My receptors were ER 15% and PR 15,5% and still didn't receive any antiestrogen treatment. As far as I know, existence of PR-receptors means good for the prognosis, but what is enough? No-one can predict. I had Stage IIIB but I'm still dancing with NED!

[DianneS]

Ursula,

I cut and pasted this from another thread here:

A copy from another post of mine applies here too as a positive note:

These are quotes from the esteemed E. Perez, MD:

''Unlike ER-positive breast cancer, in which events are strung out over the course of 10 to 15 years, in HER2-positive breast cancer most of the events occur in the first five years and a lot of them occur in the first couple of years. That is part of the reason why, in each of these studies, we saw a dramatic benefit early on, even in the first year (Perez 2005b; Piccart-Gebhart 2005; Romond 2005)"

I guess Perez is basing her comments on retrospective studies which go back after the event and analyze data. According to Perez, survival after five years for her2+, er-, pr- is a milestone, not a guaranteed cure, but a certainly a positive milestone.

Of course, we'll get the full story , and perhaps a more accurate picture, of natural history from prospective studies like the HERA where data is analyzed as it is made.


Dianne

[caya]

DianneS

I am in Toronto, Ontario and I got my ER/PR in % - ER 90%, PR 50%. This was 4 years ago.

all the best
caya

[norkdo]

astrid...which resort did u take your photo in? It looks like a good place for me to fantasize about going to, the day after I finish all my treatment!
nora

[TracyD]

Hi All, I think I can answer Nancy L's question about how you can be originally diagnosed at Stage 1 and later be diagnosed at Stage 3. Based on three biopsies I was originally diagnosed as Stage 1mic. However, after lumpectomy was diagnosed as Stage III with 5 out of 6 lymph nodes positive (done via sentinel node biopsy). Currently doing chemo first, then bi-lateral masectomy, followed by radiation.

[conomyself]

Hi Astrid, sorry I didn't see the ER-/PR-. I voted, but I am triple positive -- maybe you can remove my vote? I selected the 5th option, diagnosed at stage 4.

Rachael

[Andrea Barnett Budin]

Hi. Though I metastasized 2-4 yrs after orig dx -- actually 3 yrs -- I think it's important to add that I did not have benefit of Herceptin in 1995 (H being in clinical trials and not even testing for the HER2 gene was done then).

In August of 1998, I asked to be tested (H still in clinical trials) BUT -- fast tracked by the FDA September 28 of 1998 -- for metastatic bc. I FINALLY LUCKED OUT...

Love and Light,
Andi

[Claudia]

Hi, I am new here
I am now stage 4 ER-/PR- HER2+ and was originally diagnosed at a lower stage

[Pat94]

Nancy L, I was originally Stage 1 (& 0). A year later I had a local recurrence and was classified as Stage 3. Originally no lymph node involvement. Because of the number of positive nodes I am 3C. No distant mets at this time. The fact the recurrence was local and not distant allowed for the Stage 3 classification instead of Stage 4.

[Dakini52]

ER-/PR- HER2+. Original diagnosis stage IIB. Local recurrence in 2010. Currently NED. On Herceptin since recurrence.

[JessicaV]

Hi Elaine M, my oncologist gave a talk recently in which she said she had done a study (BCRC 107) Does BC cell change when it recurs as a metastasess, looking at ER+/-, PgR+/-, and HER2+/- factors in the primary tumor compared with metasates. Theyfound there is concordance in 99% of cancers. She said there is some confusion in that people with HER2+ were sometimes originally told they were HER2postive on a score of 1 or 2, or that they were ER+ when they were too low to really be positive. And then new primaries or concurrent primaries may be different cancers and may have diff ER+/-, PgR+/-, and HER2+/- . So this should not be such a big issue overall.
Cheers
Jessica

[Dakini52]

I had a local recurrence to my chest wall in 2010 and was treated with Herceptin surgery and radiation. I was originally Stage IIb and my recurrence didn't affect that original staging.

This link might be helpful: http://ww5.komen.org/BreastCancer/MetastaticBreastCancerIntroduction.html

[broccoli]

Hi Debbie, was the recurrence detected by a mammogram or by another type of scan?

Just curious.

Thanks! Laura

[Dakini52]

The recurrence was diagnosed during a CT scan which I was having every 6 months. I had no symptoms and my bloodwork was normal.

[moma sheila 1962]

Hello. So glad for this site. I need to see what others are feeling and dealing with. I was diagnosed in March of this year. I have her2 positive, in 1 lymph node stage 3 bc of my tumor size. It has spread to my lower back as well. I'm on herceptin every 3 weeks, on arimidex daily, xgeva every 4 weeks, along with calcium tabs 2x a day. My blood work is now in normal range. It was better the 2nd time around than the 1st. My tumor has shrank in 6 months from 8cm to 2x2 cm. My oncologist sees no need for any surgery. He plans in keeping up what we're doing now since its working so well. I'd appreciate any input. Thanks. God bless you all.

[libby2647111]

No, I was diagnosed with this same thing in December 2018