Rare? Her2+, ER+, PR+
 

My sister (Julia) is Her2+, ER+, PR+. Her second opinion doctor says this is rare. She is being treated with Herceptin and Taxol, which both docs recommend. However, doctors disagree beyond the first 12 weeks of treatment. One says to have the surgery, followed "ac" and radiation. The other says to start TAC for another 12 weeks, then surgery, then radiation. Anyone following either of these treatments and are you +, +, + and do you consider it rare?

Other info: Tumor was 4.5 centimeters in June. Just one month later it was 7 centimeters. She's not been tested for Bracha but our Mom had the same type of cancer (lobular) so we are thinking genetic?.

Would appreciate any info.

Elizabeth

I, too, am ER+,PR+. Her2+. Invasive lobular, small tumor, 7mm. Bilateral mastectomy June 05. A/C, followed by year of herceptin (will be done in Oct. 06) and 5 yers of Arimidex. THis board is a great place for support and information! Keep asking questions!

triple pos
 

Another triple pos here and invasive lobular as well. For me it was surgery first ...bilat mast 6/04 ..... then A/C, taxotere, rads. Arimidex started Jan 05 and to continue for 5 years. Late herceptin for a year started 2/06. Do know of others that did the chemo first in an attempt to reduce the size of the mass pre op. Question the docs about their plans and then make her decision.
Bless you for helping your sister thru a complex time.
Hugs, Bonnie

also a triple positive. I had several surgeries, still not clean margins - in chest wall - so had chemo (taxol with herceptin) then another surgery then radiation and now on Herceptin and Femare (an aromatase inhibitor for the ER+).
By the way, it seems that as long as you are taking one (either herceptin or an AI) you must take the other or the other will shoot up. Someone posted an article about this on the site.
yes, I agree that triples seem to be more unusual. Aren't we lucky!
sarah

Another +++ here....I think you will find tons of people here that share the same "rare" diagnosis. Although my type of bc is different (and even rarer) the +++ decide much of the initial treatment. I did have surgery and radiation, but I believe that should be decided by the size of the tumor and if and how many lymph nodes are involved. Your sister should ask for copies of all pathology and test reports. Start a file. It's very good to have especially if she is going between doctors.

I am triple too. Started back in 2000 A/C 2 rounds then surgery then 2 more A/C. Then radiation. Then TamoxifanThen first bone met in neck surgery and radiation 2001. Lets see then taxol/herceptin/zometa beginning in March 2002 for 6 months, stem cell transplant fall 2002. Then back on chemo July 2003, taxol, herceptin,Zometa, aromasin for 14 months then changed out taxol for navelbine for three months, then changed out navelbine for taxotere 13 months got 3 months with no chemo due to side effects getting toxic now doing Gemzar. Doctor just got me some Tykerb should be here in two weeks.

I'm also triple +++. My onc didn't mention that it was rare.

Also triple positive. I believe it is not as rare as first thought to be. I had a small tumor, but a lot of necrosis, so had a left mast, 5 of 14 positive nodes. A/C, Taxol/Herceptin, continuing on Herceptin into my second year now. Had 33 rads, started Arimidex 11/05 to continue indefinately.

Triple positive gives you more treatment options with hormonal drugs.

Sassy
________
TiTiCa live

Hi another triple +++. Diagnosed in March, Had left masectomy, Just finished my 5th round of chemo, waiting of my last one. Then 25 rads. Tamoxifen & Herceptin aftewards, not sure how much yet. I have ductal.

And me! -Thought I'd read somewhere that about 10% or HER2 are triple positive.

triple +++
 

I am also triple+. I have read that it is rare but more treatable. I had a lumpectomy first, then surrounding tissue and sentinol node removed. I had 16 lymph nodes removed. 8 were +. I also had a guided liver biopsy inside a CT. After all that I was officially diagnosed stage IV. After all my surgeries I had 6 cycles of Herceptin/Taxotere/Carboplatin every three weeks. Followed by 33 radiation tx. After radiation I continued Herceptin and went on Femara. I was only 36 years old at the time (2004) so I also had my ovaries removed so I could havethe Femara. I tried Lupron first but went with the oopherectomy. I have been on Herceptin for about 2 years and was told I will be on a three year minimum and take it from there. I hope this could be of some help. Sally

Hi
 

Although I am only double positive (Her2 and ER, PR neg), 44% of Her2 + women are triple positive. It is a misnomer that Her2+ is associated with only hormone negative situations.

Kind regards

Becky

I'm triple positive too!

Not rare. Well, let's see..... HER2+ is about 25-30% of all bc? About half of HER2+ bc is ERPR+, which is a little lower ratio to ERPR- than in non HER2+ bc, so perhaps the oncologist meant that it's a little less likely to ERPR+ than with HER2- bc? But still hardly rare. Math is not my strong point. Do you figure that to be about 12.5 to 15% of all bc being HER2+, ERPR+?

By the time you break all bc down just by HER2 and hormonal status (not to mention the many other details of pathology), most individual categories are probably not a lot bigger than 15%. I guess HER2-/ERPR+ is the most common - about half of all? Like I said, please check my math.

Debbie L.

I am also Her2/neu 3+++, Er & Pr +.

Chelee

Elizabeth,
I did regular mammograms, self examined my breasts more than once a month, and had my yearly physical in December of 04. On 3/5/05 when I was putting on my bra the lump caught on it. I saw my doctor on 3/7, had a mammogram on 3/8, needle biopsy done 3/9. Dx'd HER2+++, ER+++, PR+. This is a good indicator of just how aggressive HER2 breast cancer is. on 4/13/05 I had a lumpectomy(tumor was 1.5cm, high grade, invasive ductal carcinoma. Margins were not clear so further surgery done on 4/25/06.) I then had AC x4, rads x 30, and just finished my years worth of Herceptin(every 3 weeks). Also since I am post menopausal I am on Arimidex for 5 years. From the number of us on this site I find it hard to believe that triple positive is all that rare. However I am glad I am triple positive because there are more treatment options available to us than to those who are ER-, or so I understand.
Hope your sister does as well as I have. She is very lucky to have you in her corner.
Marlys

Rare? Her2+, ER+, PR+
 

Hi I am actually not an unregistered guest but am having probs logging in, This is from Kaye. I was Her2+ and ER+ My PR wasn't tested or at least I wasn't told what it was. When I asked or tried to find out later--was told that since it didn't affect treatment that there was no need to identify.

I had surgery first -- at which time path. report revealed that there was alot more going on than suspected (or at least alot more going on than what biopsy report indicated).

In addition to pleomorphic invasive lobular (rare aggressive variant with supposed relatively short relapse-free survival), IBC (based on separate tumor in nipple with dermal lymphatic invasion) along with Pagetian spread, and high grade dcis with extensive comedo necrosis. I had 9 of 12 positive nodes NOT matted together; however, first CT scan report, done one week after surgery, stated that there appeared to be remaining lymph nodes that WERE matted together. That CT report also indicated that there was a 1.5 cm lesion in the liver. A subsequent tagged red blood cell study was done to attempt to identify, but report for that stated there wasn't enough resolution in the liver to identify lesions less than 2 cm. No further testing was done. And the CT scan report also stated there were enlarged retroperitoneal nodes and enlarged aortocaval node(s) that was 2.5 cm. It/they were never biopsied.

I guess the important thing is that I am still here. My treatment included bilateral mastectomy, chemo (4AC every 3 wks), radiation sandwiched in between (25 treatments--no boost was given although I tried to get one. Radiation onc. based protocol on biopsy being stage II lobular--never took into account everything else going on. At the time I was naive about all this--thought that as far as b.c.--one either had it or didn't. I had no idea there were different kinds or even what positive nodes implied. I had never heard of the word metastases, let alone had no clue what it meant.

Okay, so after surgery, chemo, and rads, I had more chemo--2 Taxol and 2 Taxotere along with weekly Herceptin given for 1 year. I then had a complete hysterectomy/oopherectomy--abdominal. Oh, and I forgot -- before that--2 mos. after last taxane began Arimidex. I was able to get that because I refused Tamoxifen. Something about it didn't sit 'right' with me. My husband thought that it might be less effective in those who were Her2+ before research was in. However, a 2nd opinion onc thought that even if that were the case, that the Herceptin might allow it to be effective. Either way--started Arimidex.

I was pre-menopausal at time of dx. I was in 'gray' area for so many different things. I was dx'd 1 month after my 50th b'day. However, I discovered hardened area in upper chest 9 mos. earlier which I showed my ob-gyn. That appeared within days of last supposed 'normal' mammogram. He reminded me that mammo had been normal. I told him that I was confused about what I was supposed to be feeling. He wrongly wrote in my chart 'patient doesn't like to do self-checks.' He made me feel stupid for even showing him. 9 mos. later, in wee morning hours of my 50th b'day, I awoke to a severe burning pain in that breast. At first I thought it might be my heart--although wrong side, i thought referred pain. I then was reminded about something a good friend had told me--she was suspected of having a rare type of bc 6 mos prior--IBC. I then told myself to go to sleep and stop being a hypochondriac. I was so busy at work the next day I don't recall what I had been feeling, but the day after that my husband and I left for the weekend--to celebrate. My breast ached over the next week--reminding me of a mastitis infection that I had had 15+ yrs earlier when nursing my youngest child. I also thought I might be pregnant. I had been getting my periods every 3 weeks and actually skipped that time frame for the first time and went 6 weeks before getting it. 10 days after that pain, I noticed a change in my nipple. It looked different but couldn't explain how--but that triggered memory of my mother-in-law who had been dx'd with a malignant brain tumor 2 weeks after my husband and I got married almost 25 years earlier. 5 mos. after brain tumor was dx'd while in the hospital the dr. noticed that her nipple was 'inverted.' I remember it lookinhg 'different' but not inverted.
I noticed change in myserlf on a Wednesday night--the night before I was leaving at 5:00 am to go to an out-of-town conference. I made arrangements to go in first thing the following Monday morning. Through a comedy of mishaps I wound up seeing a nurse practitioner, having a mammogram, being given all my films and seeing a surgeon who did a biopsy that day. I had a dx the next day. The surgeon biopsied the hardened area in my upper breast -- almost in my chest --same area I showed my ob-gyn 9 mos. earlier at the age of 49 yrs. and 3 mos.
However. at time of my dx I was 50, and many treatment protocols appear to depend on cut-off age of being >50 or <50 at time of diagnosis. I was in the 'gray' area on that one.
I have been in treatment since my dx and believe I have been stage IV from the start. I have done and am doing alternatives and complimentary treatments. I am still on Arimidex and also betaseron (for MS). I am also on Lovastatin (cholesterol went bad after starting Arimidex). I am also on Levothyroid (became hypothyroid 5 mos. after starting Arimidex) and 10 mos. after last radiation treatment. I am also taking prophylactic Doxycyclinbe and Celebrex (400 mg/twice/day). I am also getting Zometa every 3 mos. (osteoporosis prevention--although am sure I also have bone mets not yet formally dx'd).

I forgot to mention at the time of dx my tumor markers were elevated. I also have bad family hx of breast cancer. I was same age as my mom -- 50 -- at time of dx. Her sister, a 25+ yr survivor (only one to survive more than a few yrs) was dx'd at age 45. They lost 3 first cousins to b.c plus a 4th first cousins to Hodgkins, one maternal aunt to b.c and a 2nd maternal aunt to liver cancer which we think, in retrospect was most likely metastatic b.c. Her daughter, one of above 1st cousins died at age 31 from b.c. Another first cousin died at age 28 from b.c. Her brother was one mentioned above who died of Hodgkins in his early 30's and their mom died of bc in her 40's. Then there were 2 more first cousin--a male and his sister, both of whom died in their 40's from b.c. Then there is my dad's family. His mom--my paternal grandmother died from bc in her 40's. One of my first cousins was dx'd with bc in her 50's. Her sister was dx'd with Waldenstrohms globularalnemia (sp?) in her 50's. Their dad was 'cured' from colo-rectal cancer in his 30's but developed lymphoma (non-Hodgkins) from which he died in his 70's. And my dad's other brother died from melanoma in his 60's. Interestingly, I supposedly tested negative for all the KNOWN genes.
There has been an increase in lobular bc amongst those who took hormone replacement therapy which I NEVER took (despite ob-gyn who dismissed my hardened area on my chest trying to push it on me even though I didn't have any of the symptoms for which it was usually prescribed). I refused HRT because my aunt's hematologist/oncologist said that with our family history, we shouldn't have it.
I also had 3 kids, first one at age 28 and last at age 34, all of whom I nursed exclusively for at least 6 mos each--because that was recommended amount of time to reduce risk of bc. I went on to nurse eldest for 18 mos., middle one for 13 mos, and youngest for 21 mos. It didn't work.
And because of my family history I had regular mammograms and did regular self-checks starting at age 40. I didn't want to be paranoid--and left it at that. That also didn't 'work.'

Rare? Her2+, ER+, PR+
 

Oh my GOSH! This really is an awesome Support Group. Thank you all so much. I will be armed with all of this information during my sister's next doctor visit. I cannot thank you all enough.

Okay--so I am slowly digesting this and making notes. I'll be back with more questions soon, I'm sure.

Love, hugs, and prayers for all of you.

Elizabeth

Count me in...
 

HER2+++, ER+, PR+, lumpectomy, SNB jan 2002, Stage 1, chemo, rads, tamoxifen for 1 3/4 years, then Arimidex. Hi Elizabeth!

AlaskaAngel

Raising my hand
 

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.

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

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

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

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.

Hi;

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

Cathy

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

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!

rare?
 

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

er, stands for estrogen, Pr progestrogen.

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

J

Comment re Bev's post re. Rare? Her2+ ER+ PR+
 

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?

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

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.

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


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

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!!!!!!!!

Me Too !!
 

Hi I'm also Triple positive!