HER2 3+

geewhiz · October 2011

Yep, that is the study my onc referenced. Thank you!! Those odds are still not as good as I would like...but they sure as heck beat the alternative. The Korean study done in 2008 did not mention herceptin...I bet that is why the 28% survival.

geewhiz · October 2011

Oh wow, those stats are still off the Korean Study numbers without herceptin.

Just goes to show you, there are lots of poorly designed studies. Can't believe everything you read.

orange1 · October 2011

Generally, ressults from different studies cannot be compared becasue unless you read the details you wouldn't know about what could be important differences, such as in inclusion criteria or treatment. For example one study may have required the tumors to be a certain size and the other not, or one may have required all grade 3 tumors - the other not, or they might have used different decision criteria for determining what exactly counts as positive for Her 2. They may have used different chemothrapy regimens, etc.

geewhiz · October 2011

Yes, good point. The study I saw mentioned using STAGES, whereas many others segregate populations by lymph node status and numbers involved.

Lilyn · October 2011

Hi Dimidani saw your post and wondered why do they say that small tumours have much more chance of recurring than large tumours. Usually with a very small tumour there are no affected lymph nodes but I guess with Her2 positive it doesnt matter. Six times more to have a recurrence with small tumours and three times more with large tumours seems really strange. Does anyone here know why that would be. Thanks ladies you guys are all such wonderful support.

kathleen1966 · October 2011

I found an older article/study stating that stage III women had a much worst prognosis than stage I and II in regards to Her2+. But this study was done BEFORE the use of Herceptin. The date was 2008. I don't think stage should be a factor now that we have Herceptin. It will either work or it won't. It could just as easily NOT work on a small stage I tumor with no nodes and this could then recur or not recur as a result of the success of the Herceptin as much as it could easily WORK or not work for a stage III tumor with positive nodes. Her2+ cancers are aggressive. That is why soo many women with small node negative tumors had recurrences of their cancers before Herceptin. Herceptin really has changed the playing field in this regard. But it doesn't work for everyone. It is working for a great deal of women though....

orange1 · October 2011

Hi Lilyn,

When they say small tumors have 6x chance of recurrance and large tumors have 3x chance of recurrence they mean small Her2+ tumors have a 6x chance of recurrence vs. small Her2- tumors. Large Her 2+ tumors have a 3x chance of recurrence vs large Her2- tumors. Not small Her2+ vs large Her2+ tumors.

The reason the risk increase (6x) for Her2+ (vs Her2-) is so great, is because normally the risk of small Her2- tumors recurring is small, but as we all know it is much increased due to Her gene. For large tumors - there is significant risk of recurrence, even for Her 2-, that's why the risk doesn't go up that much, the risk is already there to some extent.

Lilyn · October 2011

Thank you so much for your comments. I am so happy there are so many wise women here.

Thanks for explaining that so well Orange1 Lois

fightingforhope · November 2011

This is a great thread- thanks all for the resouce. My mom is ER-/PR- HER2 3+, and the 3+ part is really freaking me out. It frightens me to think that the cancer is aggressive and recurring; does anyone have any stories of hope or success they can share? It feels like I've gotten bad news for a week straight now, and it's more disheartening than I ever could have imagined.

BlairK · November 2011

Dear nicole4 - My wife had a BMX on October 14th. At that point the only diagnosis was bilateral DCIS with suspected microinvasion in the right breast. We got the final pathology report on October 27th. The right breast is HER2 positive with a 5.0 per the FISH test so even higher. It is also ER positive and PR negative. According to our oncologist, HER2 positive and ER/PR negative is worse. He is recommending Taxotere - Cytoxan - Herceptin x 4 every three weeks and then Herceptin for a year and Arimidex one pill a day for 5 years. To answer your primary question about gettting treatment quickly, the oncologist wanted to start treatment within two weeks but the Breast Surgeon said that 6 weeks after surgery is necessary so my wife can heal up fully from the BMX. The medical oncologist said that is OK so my wife has the first treatment on 11/29. The oncologist did say that any further delay beyond that would make him uncomfortable. My wife is using this time to get a second opinion and plans to take the second opinion back to the first oncologist. We will use the first oncologist because he is highly regarded and only 15 minutes from our home for visits and treatments. The second oncologist is also highly regarded and a medical school professor. She requested my wife to bring all the pathology slides. If you are HER2 positive you will need chemo and herceptin. If you ask me some questions I can respond back. I hope all this helps you and good luck for a complete recovery.

Hindsfeet · November 2011

Blair, I'm a little confused...did her final pathology report say dcis? Even with the her2+ dcis doesn't require chemo and I think a mx is all she needs. If her final pathology report status is idc with the her2 positive gene then the oncologist would recommend chemo and herpectin. I read, I could be wrong, but from what I understood even micro-invasion a mx is enough.

If I were in your shoes I would get a second opinion.

suzieq60 · November 2011

Eve - Blair's wife dx changed to 3 invasive IDC tumours, so that is why the onc recommended chemo/herceptin.

BlairK · November 2011

Dear evebarry and Susieq58 - First of all my wife had DCIS in both breasts and decided on the BMX. The final pathology report showed three foci of invasive ductal carcinoma - 3.5 mm, 1 mm and 1 mm. My wife got a second opinion last week as I am in China and Hong Kong on a business trip. The second oncologist strongly recommends against chemo and herceptin. Have you both read the NCCN guidelines - HER2 positive tumors under 5 mm are recommended to be treated only with hormone therapy if they are ER positive. This size is T1a. T1b tumors 5 mm to 10 mm recommend discussing chemo and herceptin treatment benefits and risks with the patient and strongly considering it. 1 cm and over there is no doubt - herceptin and chemo. You should go to my thread under the HER2 section. There has been very useful discussion. My wife and I will go now to get a third opinion at a major hospital in Philadelphia or New York (probably U Penn in Philadelphia). I would be happy to answer any questions from nicole4.

lago · November 2011

Just saw this post. Here's a quick reply without reading what's already been posted. I too had a very aggressive (grade 3) Her2++ larger tumor IDC. My biopsy was in June but I didn't have my surgery till August 31st (2010) by the time I had all the MRI etc tests and they could get me on the schedule! I was so freaked out but a few weeks made no difference. I'm a year out. I did the 6 rounds of chemo (didn't need Rads) and almost finished with reconstruction (need tattoos). I feel great and look like my old self again with shorter hair.

injammy · November 2011

Hi,

My wife was recently diagnozed with IDC III when she was just 27. Her pathology reports came as ( ICH and Frozen Test) : IDC III, with no Lymphnode Involvment ( 0/16), ER+, PR+ and Her2Neu3+, Tumor Size ( 1.7 cm * 1.5 cm * 1.4 cm * 1.2 cm ). She is currently undergoing ChemoTherapy and will be going for RadioTherapy as well. Before we start the Chemo we had a discussion with our Oncologist about going for Herceptin. As per him , Since this was an early stage breast cancer with no lymphnode involvment , it would give an added advantage of only 2% if we go for Herceptin and it has serious side effects too. But I am thinking of going for a 2nd opinion about taking Herceptin.Can someone who have already undegone or experienced on this share some thoughts please.

Thanks a lot in advance.

Regards

James

SpecialK · November 2011

injammy - with a tumor of that size, IDC with Her2+ I would include Herceptin unless she has underlying cardiac issues. Herceptin is the game changer with this kind of IDC, not sure I understand the 2% advantage info. I am pretty surprised that your oncologist is prescribing chemo without Herceptin for BC with those stats. Have you gone to the Herceptin website?

suzieq60 · November 2011

James - that is absolute garbage!!! I was told there was a 23% chance of recurrence and having TCH (the H is herceptin) that it would halve that to 11% or so. The only reasoning for what he has said is that she is not HER2+ve, then his percentage would make some sense. The side effects of herceptin are negligible!!!

Sorry for sounding a bit abrupt, but I couldn't believe what I just read. Mine was 11mm x 6mm x 7mm and there was no question of me having herceptin.

Sue

LouLou40 · November 2011

Are those measurements in cm or mm?

Anonymous · November 2011

James-i echo Susie. I thought that was strange also. She is triple positive , correct?

injammy · November 2011

Thank you all for the reply. I forgot to mention the measuring unit of the tumor. It's in CM. Yes she is triple positive.

injammy · November 2011

Dear SpecialK. Thanks a lot. yes I had verified Herceptin Website. I really don't know why onco suggested the chemo with out Herceptin. Can we go for Herceptin after Chemo? Please suggest. So far she has completed 2 cycles of Chemo

suzieq60 · November 2011

James - my onc started the herceptin on the second chemo treatment, so he could discern which drug caused any reaction - there were none BTW. She should start asap. It's very strange they haven't put her on it - I would be contacting them to find out right away - very strange - are they a reputable treatment center? What chemo drugs is she having - do you know? She should probably be having taxotere and carboplatin x 6 which is what I had - used mostly for node negative patients.

Sue

injammy · November 2011

Dear Susie- Thanks for your reply. I would be posting the medicines which she is currently undegoing for Chemo by EOD ( Sorry, Need to verify it and update). As far as I know she is not having Taxotere and Carboplatin. Yes, She is currently undergoing treatment from one of the most reputable treatment center . I will post all the details here.

Thanks

James

suzieq60 · November 2011

James - it all sounds very strange to me. I'd be asking questions and soon. There are lots and lots of triple postiive ladies on here and we all have had herceptin if our tumours were greater than 1cm. Taxol or taxotere and carboplatin are the usual chemo drugs we have had plus herceptin of course - it's the stock standard treatment.

lago · November 2011

James Just want to agree with what the others said. Herceptin works best when given with chemo and she should be getting Herceptin as standard care for her diagnosis unless she had heart issues. My tumor was much larger but I too had no node involvement. I got 1 year of herceptin (starting at the same time as chemo ).

Check here for the NCCN guidelines (pdf). You will see they recommend Hercepti: http://nccn.com/cancer-guidelines.html

Anonymous · November 2011

Agree with everyone else...and I highly recommend just taxol with the herceptin. i had few side effects.

IowaSue45 · December 2011

I too have been through it all in the last 1 1/2 years. I have read that her2 pos. horm. neg. at one time was the worst bc to have and out of all her2 only 7 % is just her2 only. I thank god dearly for giving us gals a life saver. I really don't think there is enough info. about just how good it is for us early stagers but if it does better for us than the stage 3 and 4 gal we will be around for a very long time!!! I asked my onc. just how long she thought that I may have had these nasty cancer cells growing and she told me only 4 to 6 months before I felt the 3 lumps. My bc was a little strange to all the Drs I saw because I didn't have 1 solid mass, I had 3 kind of like a chain ooo each 1cm plus an area of 5 cm specked with cancer cells. I think part of this is because of the crazy her2 grade 3 cells. I am so glad to be putting all of this behind me and moving forward. One more great story to share a gal 28 y/o on the thread where I started Aug.10 chemo was stage IV and early this summer she was declared by her onc. to be NED and she is her2 : ) Also good her2 movie to watch is Living Proof I ordered it online....great movie about how herceptin came about and what the Dr.Dennis Sullivan had to go through to get it approved. We all need to thank this man!!!

lago · December 2011

IowaSue I read the book "The making of Herceptin, a Revolutionary Treatment for Breast Cancer" by Robert Bazell. The movie is based on this book.

Towards the end of the book there is a story about this onc and how she saved this woman's life by breaking protocol and finding out if she was on the drug or not (she wasn't and managed to get Herceptin in time to save this woman's life). My jaw dropped when I found out this was my onc! I mean I knew I liked her from the start and she specialized in breast cancer/HER2+ but I had no idea she was so involved with this drug.

geewhiz · December 2011

IowaSue,

My cancer was similar to yours...3 in a row. The largest was 2, middle was 1 and the third was super small...but mine was in my nodes. The surgeon just looked at me and said there was no way to save my breast with a lumpectomy. I could have done neoadjuvant chemo and been downstaged possibly, but I just wanted it out of my body pronto. Her2 sucks!

Hindsfeet · December 2011

http://www.dslrf.org/breastcancer/content.asp?CATID=20&L2=3&L3=7&L4=0&PID=&sid=132&cid=582

HER2-Positive Tumors
My tumor tested positive for HER2. Does that mean my chance of recurrence is much greater?

Not necessarily. While it's true that some early studies found that women with HER2-positive tumors had a higher rate of recurrence, other studies haven't found that to be the case. The reason for the discrepancy seems to be that HER2 alone doesn't mean much. We have to consider a lot of other factors as well.

First, HER2 is still an enigma. It is present in most ductal carcinoma in situ (DCIS), a precancerous breast disease, but is present in only about 25 percent of all invasive breast cancers. Since DCIS usually doesn't progress to invasive cancer, HER2 may be telling the cells to grow, but not necessarily to invade other tissues-a condition for malignancy. This may mean that HER2 needs other factors to become malignant.

Second, HER2 probably doesn't act alone. Like most cellular criminals, it does the most damage in collusion with other molecular bad guys. Some studies have found that HER2 may not cause much trouble unless other proteins such as epidermal growth factor receptor are also present.

Third, the likelihood of recurrence depends on the type of treatment. Overall, the studies suggest that HER2 signals a worse prognosis primarily in women who have node-positive disease. Studies also suggest that women whose tumors are HER2-positive may do better when chemotherapy includes doxorubicin (brand name Adriamycin). The significance of HER2 in women who have node-negative disease isn't as clear because fewer have HER2-positive tumors.

HER2 3+

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