Rare? Her2+, ER+, PR+

[fitztwins]

I am triple +++ too! IDC. Never had I heard the term rare. Agressive, but not rare. Like everyone said, we have a lot of hope with the new targeted therapies (tamoxifen, femara, Herceptin, tykerb, etc...)

by the way..I did 4 a/x, 4 Taxol dose dense...12 months of Herceptin. I did surgery before hand. Left mast & reconstruction.

[MJo]

Add me to the list of triple positives. Your sister Julia has lots of company. MJO

[CLTann]

Hi,

Also triple +. My lesion was small. Only mastec. No Chemo, no radiation. On arimidex since 09/06. Less then 1 cm., clean margin. So we have a long list of triples in this group, with different degrees of lesion.

Ann

[Jackie]

I am triple positive also. My chemo was AC 4 tx & Taxotere 4 tx + Herceptin for 1 year.

[Esther]

I had been under the impression that triple positives were rare also, but I asked Dr. Pegram about it at UCLA and he indicated that it was not that rare.

I'm a triple positive also.

[Cathya]

Hi;

Me too....I'm another triple positive.

Cathy

[chartermom02]

Triple +++ here too; strongly positive both ER/PR; Her 2+++.

[Bev]

Hi Kaye, triple pos too. I was struck at how similiar your menstrual Hx is to mine. I was on the 3 week plan, then found the lump when I hadn't had a period for 6 weeks. I was 45 at the time, so it may just go with the territory. Good luck. Bev

Hello,

I am new to this site. My mom was just diagnosed a few months back with HER2 +++ breast cancer.

Could someone please explain what "ER+, PR+" means?

Thanks very much!

[panicked911]

I am also a triple positive- my understanding that while being a triple positive is not as "rare" as once thought to be - being "strongly" triple positive is what is rare.
I am being treated at a major New York cancer center - I am 1 of only 2 patients who are strongly triple positive.
Hope this helps
Susanne

[fitztwins]

er, stands for estrogen, Pr progestrogen.

I must be rare, cause I am strongly triple pos. I think I am an over achiever.

J

[Kaye]

Hi Bev--just saw your post re. dx at time your period changed from every 3 wks to every 6 wks. What kind of bc were you dx'd with?
I got my period at age 10 yrs 11 mos. I skipped one month and then was regular throughout. I had 3 kids and got my period back within one month after delivery despite nursing each exclusively.
When I decided to have a hysterectomy--because of bad family bc hx--it was almost like adding insult to injury because I never had any major problems with my periods.
Also--I did have something else for awhile--high testosterone levels. I had/have problem with hirsutism (facial hair growth). At one time I wondered if I might have PCOS--polycystic ovaries--but never had any fertility problems. I am wondering if what was going on was, perhaps, an off-shoot or different variation.
I did have genetic testing, as I think I mentioned, but tested negative for all the 'known' genes. They are not all known, and with our family history wonder if we have our 'own' gene?

[saleboat]

Susanne--

I think we're being treated at the same NYC cancer center-- so I must be the other strongly triple positive patient. I didn't know I was in such rarefied company!

I just had my last Herceptin yesterday-- it was fun to high five the nurses on the way out.

Jen

[astrid]

I am also triple +++ and yes it is rare. Only roughly 15% are +++. As said before this is a good prognosis because they know how to treat all three. Your sister having chemo first or surgery first is a matter of shrinking the tumor so a better cosmetic result can be performed with the lumpectomy. Her 4.5CM tumor is large and chemo can shrink it. I know a woman who had a 7CM tumor that was shrunk to .5CM before surgery.



I was also treated with 6 rounds of high dose Taxol, followed by radiation and followed by a year of Herceptin. I did not do Taxol and Herceptin together as I participated in a clinical study for Taxol as a stand alone chemo drug versus AC as stand alone.



I am also doing Tamoxifen and am concerned about the controversy surrounding Tamoxifen and HER2+ women; however I am still pre menopausal. So Tamoxifen is the standard protocal. I am waiting until OCT (have a 2 week trip to French Polynesian planned in September and do not want to feel bad and currently I feel great) to have my estrogen levels checked again to see if I can switch to an AI or join a clinical study that has ovarian suppression + Tamoxifen or ovarian suppression + AI. This study is for pre menopausal women only and right now I am in chemo pause.

[tammymarie1971]

Her2 & ER+..I don't know about PR..can't seem to get any answers on that one.

I love how informative this site is...recently I went to a breast cancer support meeting..to discuss dragon boating..anyway I was surprised at how many of them did not know about their own her2 status or er status!!! I was so bothered by that fact...anyway I do believe knowledge is power!!!
I was dx'd in '01, at 30yrs old, they did not do her2 testing then as far as I know,
I can't help but think that maybe I would of been spared these recurrences if I could of gotten herceptin then, I also only know about estrogen status.
I only found out about the her2 status at my liver mets biopsy. Mar'04 - Tamoxifen did not stop this recurrence.

For that recurrence I only had taxol/herceptin 6 rounds. I did have a liver resection too, I have since wondered why only 6 rounds of herceptin...Should it not have been for at least a year??? Maybe I wouln't be dealing with bone mets now??
I realize that hindsight is 20/20 and these what if's aren't going to change anything now!

Also..I have been to Mexcio twice for treatment as well, and they put me on Femera even though I am still premenopausal, they thought this would put me into menopause, because my levels were close to menopausal levels? Anyway..I still continued with my periods although they were less regular..well this last time in Mexico they put me on arimidex so we will see. I was hesitant to go on these AI's does anyone know if they are dangerous for pre-menopause??
I have been just as skeptical about Mexican clinics as anyone else...but did you know that the first report about the biological characteristics of bisphosphonates was published in 1968!!!
Some Mexican clinics started using clodronate in the late '80's. The FDA did not approve pamidronate until '94. So for 7 years cancer patients went to Mexico to get bisphosphonates for bone mets, during this time the FDA was searching and seizing clodronate coming across, illegally into the US.
I found this very interesting as well as personally comforting that reputable Mexican clinics can actually have a headstart on some treatments that eventually will be approved here!
Tammy

[astrid]

I went to a lecture in June from a local oncologist who was asked to speak at our breast cancer support group on anti-estrogen therapy for Breast cancer. He asked if there were any questions, so of course I said “Yes, I am triple positive and have recently read that the combination of ER+ and HER2+ is creating Tamoxifen resistance in those patients. I have also heard that sometimes Tamoxifen actually acts like an activator instead of an antagonist. My ONC assures me these are only animal/lab studies and not done on humans. Is this correct?”

His lecture was fascinating. He covered everyone’s questions in his explanation on Tamoxifen and the newer Aromatase Inhibitors (AI). He compared the two and explained why AIs are not effective for pre menopausal women. As, I am pre menopausal there is no standard treatment other than Tamoxifen. The reason AIs will not work for pre menopausal women is that the ovaries and the pituitary gland have feed back to each other so when an AI tries to shut the estrogen down the pituitary gland says “Hey, I need more estrogen and the ovaries respond and create more. This does not happen when the ovaries are shut down either chemically or by menopause because there is no one home to answer the pituitary gland when it demands more so it basically shuts up” AIs are not strong enough to shut down all the estrogen that the ovaries produce. They work on the other systems that create estrogen such as your skin and adrenalglands.

He then went into what is becoming a newly discovered problem and that is the cross talk between the estrogen receptor and the HER2 receptor. He confirmed that these are only animal/lab studies and not done on humans; however what they have found is that when you add the biologic therapy of Herceptin that the Herceptin blocks the cross talk because it binds to the HER2 protein and blocks it from dividing and therefore makes the Tamoxifen effective again. So while on Herceptin, I will not have to worry about Tamoxifen activating residual cancer cells. He also said that the more ER+ you are the more effective Tamoxifen is. I am 16% ER+, so my chances of reoccurrence and DFS (Disease Free Survival) are improved by approximately 16%.

[Becky]

Astrid


The 16% on your estrogen receptor does not correlate to the chance of DFS or overall survival or the chance that an antihormonal will work. It relates to how much staining for the estrogen receptor (ER) was present on the piece the pathologist tested for ER during testing. Yours stains 16%. I am 50% ER so mine stained more. The higher your ER and PR % the more you may respond to anti hormonal therapy. Therefore, someone like my mother (who is Her2 negative) should respond very well since she is 98% ER and 90% PR.

Many women on this board who are Her2+ are also strongly hormone positive like my mother as well.

Being hormone + and Her2+ is not rare in the Her2 world. About 45% - 50% of Her2+ women are also hormone positive as well which relates to your 15% figure of all bc overall (since 25% - 30% are Her2+ and half of that is about 15%).

I hope this clears up the % part of the hormone receptors. For the record, there are 3 rules of thought on being hormone negative.

1. Some experts say that if you are less than 10% ER or PR, then they consider that negative.

2. Some experts bring that number down to being less than 5% ER or PR then you are considered negative.

3. Some experts say if you can measure or stain anything at all (let's say 1%) they consider that positive.

In my research however (I am 50% ER but less than 5% PR so this topic greatly interests me), I am considered PR negative (and I have had 4 opinions from oncos on that and alot of literature stating that).

Kindest regards

Becky

[Montana]

I saw my onc today for my 4 month check up and asked about the triple positive because of our discussion here. He said it IS rare and he only has 4 or 5 patients with this combination.
He also had some bad news for those still suffering with hot flashes....he has an 85 year old women who is still getting hot flashes...........aaarrrggghhhh!!!!!!!!

[astrid]

Becky, like you said the more ER+ you are the better the hormonal therapy will work. That is why I correlate my 16% with only a 16% improvement or response to therapy. I would correlate yours as a better chance for DFS and a 50% improvement over no hormonal therapy. This is only MY uneducated estimate.

[tricia keegan]

Hi I'm also Triple positive!