I need advice about Herceptin

My diagnosis was very similar to yours: 0.9 cm IDC. ER- PR- HER2+3.  I had a bilateral,  6 rounds of chemo and a year of herceptin. I've also got osteoporosis. I had very few side effects from the herceptin. Personally, I would insist on having the option of doing herceptin since the benefits (I think) far outweigh the risks. If you do herceptin, your heart function would be monitored closely. I'd ask for a second opinion from another oncologist. I suspect there's a lot of differences in oncologists - mine highly recommended doing chemo and herceptin, even with the small tumor.

Hope-

I have a similar diagnosis as you except that I'm hormonally negative but Her2+++ which in my case can actually mean that the tumor is more aggressive than that of being hormonally positive.  I was at stage T1mic; I had DCIS with " a focus" of less than 1mm of a microinvasion.  Sentinel node negative.  Being Her2+++ I was extremely beside myself after reading the web but after consulting with 10.....yes 10 oncologists about my treatment plan....they ALL said no chemo and no herceptin because the risks outweigh the benefits for such a small invasive component. They all recommended radiation after my  lumpectomy. The oncologists I consulted with ranged in years of experience as well as some were in private practice to a few from large cancer centers, including a consult from Dr. Eric Winer from Dana Farber in Boston

 Most of the information on the web about Her2+++ is outdated and can drive you crazy. I've been there.     I know some of the more agressive oncologists would possibly consider chemo and herceptin if the tumor was over 5-6mm or closer to 1cm and/or node postive.  I believe a member on this forum went to Sloan Kettering for Her2+++ tumor, they recommend chemo/herceptin for tumors that are over the 5-6mm as well.

As far as Herceptin alone, my doctors said the protocol is to use it with chemo and is not supposed to be used alone also we don't know how well it works without chemo.  I know some members have gotten Herceptin alone but most of the studies on Herceptin were done in conjuction with chemo. 

For my own peace of mind, I went to see a naturalpath who my breast surgeon has been sending her patients to for over 20years and who treats alot of breast cancer survivors. She has made several recommendations including diet, vitamins, life style etc.  Most importantly, having adequate levels of Vitamin D3 is important with breast cancer.  You may google to confirm and learn about the latest studies.  Wishing you the very best.

Liz

Just my 2 cents.  Given the rapid growth of Her2 positive bc, I would opt for herceptin no matter what size the original tumor.

I went from a clear mammo, to a 4 cm tumor in 6 months. The growth rate (KI67) of my tumor was 70%, and that's extremely high. My Her2 test was +++ very strong.

Just personaly, I wouldn't give her2 positive bc ANY chance to grow. 

My mother, who is 78, and hence my name here, is supposed to start her regimine of Taxol/Herceptin weekly for 12 weeks tomorrow. It will be followed with Herceptin every 3 weeks for a year. Her tumor was smallish atabout 1.2cm (I say about because she went in for a lumpectomy twice since she didn't get clear margins the first time), her nodes were clear and she is hormone negative, BUT HER2 positive. She is pretty darn helathy otherwise and I guess that is why even given her age, she is getting chemo. We are both very apprehensive about it, but I think after stumbling across this site and reading several threads, I am feeling better about her taking it. I was thinking it may not REALLY be necessary, but after hearing more about just how aggressive this HER2 can be, I think she should at least try it. She couldn't get an appointment in time for a port so will have her first treatment in her veins tomorrow. Wish us luck!!!

Wow, BrendaR, we share the same bad biology.  I thought I was the only one on here with a KI67 of 70%.

Hi Hope - I'm sorry you're going through all this, but you came to the right place for information. How large was your tumor - the oncs I spoke with all said anything larger than .5cm needs Herceptin if you're Her2+. You can get more great info at this web site: www.her2support.org

Also - there's a discussion at her2support that discusses this very issue - about how Herceptin should be given to more women who have early stage BC. Check it out here:

http://her2support.org/vbulletin/showthread.php?p=178141&posted=1#post178141

My tumor was .9cm - and was ER/PR positive as well as Her2+. Before my Fish score came back, my oncologist had my tumor sent to Oncotype DX - my score came back at 22, which he said was low enough that I wouldn't need chemo. That very day, the Fish report was fax'd to his office and he immediately changed his mind when it showed Her2+. My onc wanted to be aggressive but didn't want me to suffer unnecessary heart risks or lose my hair - so he put me on 4 months of Navelbine every two weeks with Herceptin. I'm done with the Navelbine and will continue the year with Herceptin until next April. I'm post-menopausal so I'm also on Arimidex - but I'm also talking to a gynecologic oncologist about getting a hysterectomy and oopherectomy which have their own problems, although nothing too serious right now.

My oncologist was so surprised that my Fish report showed Her2+ that he sent the tissue out to a second laboratory to get a second pathology reading - it confirmed the first. I'd recommend doing this if you haven't done so already just to be sure there weren't any mistakes in your pathology reading...............and mistakes have happened to some women! I also had two other oncologists' opinions and they all agreed with my first onc. Good luck and I hope this information helps you!

Hope-

we're all in search of long term survivors but the truth is that "most"  (not all) who post in these forums are those that are newly diagnosed and searching for answers such as you, are in active treatment, those who are not fully ready to move on yet, such as myself, those few who just simply can't let go and/or stay on to help others.  The majority who finish with treatment move on with their lives. Atleast most of the breast cancer survivors I met have done that and that's what helped them to put breast cancer behind them.  I hope that you understand my point....those who are past treatment (especially long term survivors) and are doing well usually don't post.  

I forgot to mention that a long time ago testing for her2 was not done it's only been in the last decade or so that it's been done.  If anyone know specifics please correct me.  I know of long term survivors who had a "very aggressive" form of breast cancer and are doing well but do not know about their her2 status since they did not test for that a long time ago.

Also, finding tiny tumors used to be difficult to find in especially in dense breasts, now digital mammograms has changed that, so more women are now diagnosed at an earlier stage.  

Just wanted to point out a few facts to consider. 

Wishing you the very best.

 I am 36 and I have mets on my liver, lung and abdominal lymph nodes.My oncologist says that my cancer seems to be in remission, and that I will have three more chemos and following that I will carry on with herceptin every three weeks until the cancer develops resistance to Herceptin.Is there anyone who has been on herceptin for three years or more

Hope -- I've never heard that about a <1 cm tumor not needing Herceptin.  The one thing that might give me pause about taking Herceptin if I were you is your weak heart.  Herceptin does have a risk of heart damage, though you are generally monitored closely while taking the drug.

My dx is very similar to yours.  IDC, 1.1 cm, no nodes, poor grade, ER+, Her-2+.  I did ACT dose dense, radiation, Herceptin, Tamoxifen (now Arimidex following an ooph).

The thing about Herceptin is that it cuts your risk of recurrence in half after all the other therapies.  Did you do an Oncotype?  What does your onc say about your risk of recurrence?  Is that a number you can live with?