Grade 1 but Her2+

KathyL

Hi girls.  Just thought I'd share my experiences.  I was dx at age 36 in 8/07.  I had lumpectomy, then mastectomy (for DCIS in borders), with reconstruction with implants.  I started TCH x4 in Jan. 08 via port, and finished in March.  I'm currently doing herceptin every 3 weeks until Jan. '09, and finishing up my reconstruction.  It's been a long road, esp. since I was told originally no chemo.  I had a second opinion which led me to do it (they found multifocal IDC on that staining, originally they'd just found one area 4mm-- yup millimeters).  My docs thought it best to do everything now since I am young and had an aggressive BC (grade 3, ER-/PR-, HER2+++).

CindyB

Ahhh, so grade 1 and Her2+ is rare, but not so rare as we might think! Seems others are having aggressive treatment as well.  I just didn't want to have any regrets, especially on the odd chance that cells could have broken loose even with no nodes involved.  I'm 44 and if eligible, will have the genetic testing.  If positive, like you Kathy, those things will be history!  I can imagine that was a hard decision to make all at once.

Swimangel - I'm afraid I don't know what navelbine is.  But I do have a port and am glad that I do.  It just makes things easier.  I did have an echo before herceptin, but didn't think to ask the numbers other than to know that the cardiologist found all was normal.  I'll have a second one in about a month.  More than anything, I hope that I can finish a full course of herceptin.

Take care!

KathyL

CindyB:  I had the genetic testing done, and was BRCA1 and BRCA2 negative.

CindyB

Kathy,

So your physician must have thought that even without the genetic component, with your age and Her2+++, the risk of recurrence was quite high?  None of us wants to go through this again!

KathyL

Well, high enough that the benefits of chemo outweighed the risks.  But my age and HER2 status were absolutely the "worrisome" components in the decision. 

mimi1030

Christiana,

My mom is Her2 3+ also, she is also Grade 1.  The oncologist ask for it to be retested, but sure as it was it came back the same, Grade 1 Her2+++.

There are a lot of women with Her2+++, alot of them are on the mets board which is where I usually post.  However, even though my mom was Her2+++, stage 1....Herceptin was not available to early stagers which is what she was back in 2004.  Now of course she gets Herceptin because she now has mets.  And it is doing a great job.

They say the Her2 3+ respond better to Herceptin that those with a lesser degree of Her2, like 2+.

Hugs.

Michelle

Dejaboo

How does one know How many ++ they are.

I just got my Pathology on paper today. 

Here is what it says:

HER2 amplification Positive (8.13 HER2/CEP17 ratio FISH)

HER2 gene copies (17.56 mean, per tumor nucleus)

Chromosome 17 centromere  copies  (2.16 mean, per tumor nucleus)

KathyL

Dejaboo:  That's a good questions.  I thought that if you were 3+ it was "positive".  My path report said 3+, I never had FISH testing b/c it was so high there was no doubt it was positive.  I'll be curious to see what others post about this.

CindyB

I asked this question of my oncologist today and she said that they really don't understand the implications if one has a higher ratio of Her2 - 3+.  Basically, 3+ implies the ratio is higher than 3, but clinically there isn't any meaning attached to having a higher ratio - like mine being 12.9.

bunk

Hi all, I was diagnosed at age 30 in 2004 with stage 1 (2mm) no node involvement Her ne u 2 +++ and er+ they didn't have enough tissue to test progesterone or oncotype me. I had a lumpectomy and rads and I am on Tamox. So who knows!

KathyL

Hi Bunk!  Congrats in NED since 2004.  That's good to hear.

bunk

Thank you. It seems so long ago but I am still scared to death it will come back. I recently had the gene test which was negative ... If it were positive I could blame it on the gene.

Looks like we had kind of similar diagnoses. Just wait, you will be 3 1/2 years out in no time!

bunk

DUH.

This whole time I thought you were talking about stage not grade!

I was grade 2, stage 1.

bluejay1

Cindy in Fargo,



Your tumor sounds like mine. I am 95% set on chemo. I was told I am in a gray area, and have the option of just getting tamox, but the chemo is the only way * so far * that they know of to administer herceptin.



My most likely therapy is a new one: a single chemo - taxol, in dose dense form, once a week for 12 weeks, with herceptin every 3 weeks? maybe it was herceptin every week - can't recall right now. I actually consulted three oncologists and will probably consult a 4th (if the secretary will ever answer the phone) before I decide for sure.



I am in NYC and so am near Sloan Kettering, a pretty major cancer center, and a researcher there told me about the study of dose-dense Taxol alone, combined with Herceptin, for stage I node-neg. These results are very new, and can be found on the web. This researcher also said they hope to begin 'herceptin alone' studies soon. I expressed my friendly annoyance that they have not figured this out yet!



The only things I am really afraid of with chemo are : chemo brain, menopause and neuropathy, and of course that rare chance of getting heart failure from herceptin. Since I am 43, my oncologist said I have a 50/50 % chance of being sent into menopause with this treatment. I have a 40 yr old friend who got taxotere and had no neuropathy at all, got her periods back after a year after finishing chemo, and said that she felt 'chemo brain' was just severe fatigue from chemo, and it did not last. However, everyone is different.



& Like others, I am hesitant about chemo at all, because it is not even a sure thing that people like me have any stray cancer cells and 1.1 cm is pretty small. I know, I know, it's the %$#! rogue her2 issue. And that is indeed pushing me toward the chemo path. But a 5% improvement does not seem like a lot regardless.



I just wanted to see how you are doing on your treatment - and anyone else who may be taking taxol or herceptin - and anyone who refused the herceptin for Her2.



I would also like to take a quick spot poll:



Who with hormone+ has undertaken intensive aerobic exercise as part of their treatment?



Anyone who is est/prog+ should strongly consider getting into an aerobic training program immediately, because there are studies that suggest sedentary and/or overweight women have a much higher recurrence. The reason is thought to be that those issues raise your hormone levels, possibly even with Tamox. There is a link between aerobic exercise and reduction of circulating estrogen.



And last I heard, the worst side effects of careful aerobic exercise are: heavy breathing, drastically better sleep, reduced or no PMS, reduced hot flashes, weight loss, bone strength, stress reduction, mood disorder reduction, muscle building, lower cholesterol and increased endurance.

CindyB

BlueJay,

Yes, our tumors resemble one another!  We decided to do 4 infusions of taxotere and carboplatin every three weeks.  We originally talked about 6 infusions, but the oncologist decided that 4 was sufficient and we will get "more bang for our buck" from herceptin and the ER/PR+ treatments.  So, I am 75% done with chemo.  I have herceptin every week during chemo and every three weeks for the next year after chemo.

Certainly with node negative cancer, the likelihood is that there were not cancer cells taking hold elsewhere, but since no one can say for certain, I opted to be aggressive.  I'm only 44 and plan on being around a long time.  I didn't want to have regrets a few years done the road.  The treatments have been pretty brutal on me, but nothing that won't dissipate when we're done.

I wish you well.  Let me know what you decide!

Cindy

mary6204

Bluejay, I just want to comment on your "careful aerobic exercise" list.  I agree completely with everything except the hot flashes.  I am 7 years into menopause which started at 47 and I workout approximately 5 or more times a week.  If exercise really did reduce hot flashes I might have shot myself if I didn't exercise.  I don't think anybody had more hot flashes than I used to have, they just slowed down last fall.  But I will add that my oncologist says in the years he's been treating cancer patients he truly feels  those who exercise get through chemo considerable better, especially in the pain area like reactions to Neulasta shots.  I have no trouble at all with the shots.  Mary

csloc5

Hi ladies, I was diagnosed this March. Since than I have had a left breast mastecomy and now I am undergoing chemo and herception treatment. I am having 4 1/2 months of Taxotere /Carboplastin

& Herceptin and than Herception once month until May 2009. My tumor was 2.3 cm and I am HER2+ 5.4(fish), node neg. My Oncologist said that my outcome looks good on paper. I am trying to be strong, but deep down I want to freak out. I am 31 years old with 5 young kids. The other day I tried to wake myself up. This all feels like a dream. I just want it all to go away. I just don't know how to deal with this mentally. I came here so I could remind myself that I am not alone. I just would like to hear from any of you that would like to talk. I really need the support.  

csloc5

Hi,

I am a little confused on the difference on grade and stage. Could someone explain?

Thanks!

sue4unj

Hi girls,

I haven't been on the boards for quite a while and when I started reading this thread, I thought I would throw in my experience.  I was dx in 11/05 with Stage 1, Grade 2, clear margins, no lympth node involvement, however, I am neu2+++.  My FISH test came back questionable.  My oncologist strongly recommended that I have the oncotype dx, which I did.  The results were that I was in the highest % for spread and reocurrance.  I had a lumpectomy,  4 A/C, 12 Taxol, 1 year of herceptin, 38 zaps of rads and now I'm on Aromosin for 5 years.  I'm not sure if this is helpful  . . .                                                           

Sue 

AlaskaAngel

The problem is that none of us can tell what in particular actually works for each of us. For example, I am NED 6+ years out after having CAF x 6, rads, and a brief run of tamoxifen. That means that at least up to now, none of the following things made the "difference" for me at all in keeping me NED, and I am not at the low end of Stage I risk but at the high end based on tumor size and grade:

Herceptin/trastuzumab (never had any)

Taxane (never had any)

Dose dense (didn't have dose dense and in fact my treatments ended up being 4 weeks apart because I refused blood stimulating products and had to wait longer for my counts to improve between treatments)

Aromatase Inhibitor (never had any)

I'm not saying that these treatments do not work for some, I'm only saying that they definitely may not be making any difference at all for many people, even though there is a tendency to believe they are making a difference.

-AlaskaAngel

KathyL

csloc5:  I check in here every once in a while.  Just saw your post today and wanted to respond.  First of all, from one mom going through this to another--- happy Mother's day!  And the same to all the other moms out there battling BC.

Next, grade vs. stage: grade is how much like a normal cell the cancer cells look when seen under a microscope ("differentiated"), and how quickly they are reproducing.  One means it's pretty close to looking normal and has slow growth, 3 means not really at all looking normal and growing quickly("highly undifferentiated").  From the BCO website: "Grade" of cancer cell growth: Patterns of cell growth are rated on a scale from 1 to 3 (also referred to as low, medium, and high instead of 1, 2 or 3). Calm, well-organized growth with few cells reproducing is considered grade 1. Disorganized, irregular growth patterns in which many cells are in the process of making new cells is called grade 3...

You can do a search on the topic, just type in "cell grading" or just "grading" for more info.  Many her2 BC are grade 3, but not all.

Stage has to do with the size of the BC and whether it involves the nodes or not.  You can also get info here on that.  Type in "staging".  Stages range from 0 (in situ or "precancer") to 4.

Lastly, your comment about mental support...  You are so not alone, though I completely understand the overwhelming feelings you probably are having.  This website has been a huge support for me even though I have a wonderfully supportive husband and family/friends.  No one quite "gets it" better than other BC patients going through whatever you are going through at the time.  Check out links/threads related to whatever surgery or tx you're doing.  There's also a nice area for young women, and one for moms.  I am 37 (dx last year at age 36) and have a 2 and 5 year old.  Anytime you want to chat, feel free to PM me.  I think in some ways going through BC is even harder when you have small children involved.  So far, I've weathered dx, about 4 surgeries and reconstruction, 4 rounds of chemo, and continuing herceptin.  Talking to the wonderful woman here at BCO has been a HUGE help through it all.  You WILL make it through all this, and will probably come out the other side an even stronger woman than before.  You CAN do this!

mimi1030

Can you ladies talk about the Her2, grade 1? My mom is this and I have tried researching about this and I get nothing.  Maybe I am not looking properly.  But, I know this is rare but what does that mean, is it good to be grade 1 Her2 or bad?  What does that combination mean as far as prognosis? My mom is stage 4, initially stage 1 so we are kind of tired of being in that small margin group of 2% when something happens.  What does this mean?

Thanks for your input,

Michelle

swimangel72

I feel like I'm the only person who's on this treatment schedule:

every two weeks I get an infusion of Herceptin combined with Navelbine - this will last four months - then I'll continue on Herceptin for a year, coupled with Arimidex pills for 5 years. My oncologist says Navelbine is strong - but it won't exacerbate the heart problems caused by Herceptin. Also I won't lose my hair.

I'm Her2+ and Stage1. I opted for a mastectomy (with immediate Diep reconstruction) because I wanted to kill this beast quickly......but finding out I was Her2+ was a big blow to me, especially when I needed to get a chemo port, sigh.

Anyway - I wonder if anyone else's onc's have talked about Herceptin with Navelbine? I feel like I'm the only one!

KataniaStar

Hi folks, I'm new to this board.  I got my dx on 4/1 (some April Fool's Day that was!) and had a lumpectomy on 4/28.  Lump was 1.5 cm, Stage 1, Grade 3, ER-/PR-, HER2+.  Clean margin, nodes negative.

I'm still not clear about the distinctions between plain old HER2+ and HER2+++.  Can someone explain this?  Does it have to do with your FISH ratio?  Mine was 14.69 and proliferative index (Ki-67) was 20%.

My onc has proposed chemo with TCH, to begin on 6/5 for 6 cycles, continue Herceptin alone to complete one year, then rad.

I noticed bluejay1 mentioned a study of dose-dense Taxol alone, combined with Herceptin, for stage I node-neg. She said these results were very new and could be found on the web.  Could someone provide a link?

Thanks everybody, and God bless.

mimi1030

Hi Kat,

Her2+ and Her2+++ is just symbolic of Her2 positivity, the pluses can represent how much the Her2 is overexpressed also, however absolute positivity is only confirmed when you express it more than 3 times the normal.  When you see the 3 +++, it means that they highly express the Her2 and the 3 really means that althought the number is higher they just express it as 3 +, because it would be too long if they put in 20 + for those who express it that much.  My mom is Her2+++, she overexpresses it abundantly even though her number is not actually 3 it is something greater than that like yourself.  You are considered Her2+++, highly overexpressed, yours test was 14.69 but are still considered Her2+++.  That probably sounds mumbo jumbo, so hopefully someone else might fill in the details better.

My mom is on Taxol and Herceptin, she has mets however...she doesn't do the dose-dense version, she doesn't need to the regular dose has took away the cancer at a dramatic rate.  She is still on it however and will be indefinitely.

Hugs,

Michelle

bluejay1

kataniastar,



Have you decided on your chemo yet?



I cannot find the dose-dense Taxol link. However, there are at least 2 studies looking into the Taxol- only issue at Sloan Kettering. Here is one:




http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=04-042


it says:
"The use of paclitaxel to treat node-negative breast cancer is investigational. Based on previous studies, there is a strong chance that treatment with paclitaxel alone will be as good, if not better, than adjuvant therapy with CA therapy in patients with node-negative breast cancer."




& another:


http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=08-017



here is something from this site that is informative, but I don't know how old this link is:



http://www.breastcancer.org/symptoms/recur_metast/treat_metast/herceptin.jsp



Herceptin Treatment Options

Herceptin (chemical name: trastuzumab) is one of the first targeted therapies used to treat breast cancer. It specifically attacks, kills off, or stops the growth of cells that make too much of a protein called HER2/neu—and it leaves most normal cells alone. ....



You can take Herceptin alone or combine it with other chemotherapies or hormonal therapies. Studies suggest that Herceptin tends to work better when it is combined with chemotherapy such as:

Taxol (chemical name: paclitaxel),

Taxol and Paraplatin (chemical name: carboplatin), and

Navelbine (chemical name: vinorelbine).


>>So swimangel, someone else somewhere must be taking Navelbine, too!




Herceptin is being tested in combination with these chemotherapies:

Abraxane (chemical name: albumin-bound paclitaxel),

Abraxane and Gemzar (chemical name: gemcitabine),

Taxotere (chemical name: docetaxel),

CMF (cyclophosphamide, methotrexate, and fluorouracil),

Gemzar (chemical name: gemcitabine), and

Xeloda (chemical name: capecitabine).



None of these combinations include chemotherapy with Adriamycin (chemical name: doxorubicin). That's because the risk of heart damage is too high when Herceptin is given together with this kind of chemotherapy.