newbie

My wife just had a lumpectomy. 1.4 centimeters. Nodes were negative. Tumor was HER pos 3+. Oncologist wants to do the standard chemo treatment. No Herceptin because of possible side effects. Dr. stated that the side effect risk is greater than the risk of reacurrence of the cancer. I don't know. Have any of you been there and done that?
Thanks.
Addendum:
My wife will be taking A/C chemo and radiation. She had clear margins. What I meant by "been there and done that" was, has anyone NOT done Herceptin with a HER 3+ pos. and did just the standard chemo and radiation and had long term success? I know from reading your stories that you all have "been there and done that" in one way or another. Thank you for this message board.
P.S.My wife tells me that her oncologist does not want to use Herceptin as a prophylactic at this point. If there ever comes a time when there is reoccurence, then she would use it. Has anyone used Herceptin as a prophylactic?

Hi Martin,

If it's not already clear from the answers given so far, there is a huge international effort right now being made to determine whether herceptin is useful in preventing recurrences. Lots of evidence suggests yes. In the U.S. those clinical trials are mostly giving herceptin along with chemo, and then continuing for a year after. The huge international HERA trial (Canada, Europe, Australia) gives herceptin after surgery, chemo, rads--for a year or two years (or not at all if the woman is randomized to that arm of the trial). And, lots of oncologists are now giving herceptin out of a trial. But anecdotal evidence suggests that only happens when the woman is officially at "high risk" of recurrence (more than 10 positive nodes, for instance) or herself pushes her oncologist to prescribe it.

That said, the side effects of herceptin are fairly minimal/rare. There was concern, early on its development, about heart toxicity. Recent evidence suggests that something likt 5% of women on herceptin have some heart problems, just about all of it reversible. But with careful monitoring (through MUGA or ECHO) it's easy to tell how/if herceptin is affecting the heart.

Good luck!
Jeff

Hi Martin. I don't post here often, but find this site to be a wealth of information. Please give your wife our best wishes and let her know she will get through this.

I was diagnosed in October 2002 at age 45 with 2.5 cm tumor, 1 positive node, HER2+, and PR/ER+. Due to my being Her2+ my oncologist urged me to enter the trial for early stage breast cancer patients with HER2+. He had to be really push me as I felt that it would be a long road to travel and I don't tolerate medications very well. But after agonizing over the decision, I felt that I needed to give it everything I've got up front to try and prevent any recurrences.

With that said, I had the lumpectomy and entered into the trial and was ramdomized to ARM C. This included 4 AC, 12 weekly Taxol, 36 radiation treatments while then starting on weekly Herceptin for 52 treatments. Also on Tamoxifen
I am now on treatment 35 of Herceptin and doing well. There are quite a few women at this site who are participating in this trial. If you go back to postings of January 24, you will see my posting on this subject and the responses from those who are participating. The results from these women and others thus far are very positive.

Also, if you haven't done so already, go to www.cancer.gov and click on clinical trials and herceptin. This will give you some background info on Herceptin. The full results of the trial are expected in 2006.

I am very grateful to have been chosen to participate in the trial and being given the opportunity to take Herceptin!

I hope this helps.

Glad that so many are suggesting Herceptin. Side effects are so very rare. Seems that any reduction or fear of reduction in heart function can be addressed with CoQ10. If there is any way that your wife can get Herceptin I would highly recommended it. I have no side effects and look forward to my infusion every three weeks.

Martin,
My BC was much more advavced that your wife's, Stage IIIB, but I now feel Herceptin even at that stage would have prevented or delayed recurrence, at which point I could have then added chemo to regain NED. With that said, I salute your wife for her early dx, and welcome to the group...you can count on lots of advice and support here, we're not shy about either!
Lolly

Martin wrote: "My wife just had a lumpectomy. 1.4 centimeters. Nodes were negative. Tumor was HER pos 3+. Oncologist wants to do the standard chemo treatment. No Herceptin because of possible side effects"

A little more info may be helpful.
Did they just check the Sentinal Node during the lumpectomy and go no further with node dissection?
Your medical plan may impose restrictions that the oncologist has to respect in recommending treatment. (Usually the case.)
Is there a trial with herceptin given after the chemo and rads available where you are?
If so, I would opt for that. (If your wife is going to take Adriamycin, like I did, the docs do not like to give Herceptin at the same time due to a double whammy on the heart - reason they give it after.)
ALso, the docs have to go by some stats regarding treatment - with no positive nodes, this may put her in a different category.
You can try to get another opinion - and have breast MRI or a PET scan to make sure there is not more tiny tumor someplace else. During the path work on my lumpectomy tissue they found another small tumor within the margins. That is why the breast MRIs and PET scan were ordered.
So much to consider, but we hope to give you some perspective from the "other side."

Dear Martin, my sister had a 1.2 cm tumor, clear margins, no nodes. She was given a/c and radiation. They did not know she was her2+ until after her cancer came back in her liver and lungs after one year. I would strongly recommend you get a second or third opinion and if you can she a breast cancer specialist. My sister did and it saved her life! She is now on herceptin alone and doing great! Welcome to the board and you will be in our thoughts!! love jennifer in colorado

Martin,

As you can see you have come to the right place for advice. You will get varying opinions which is nice to see all the different points of view - which in the end is what feels right for you. With no node involvement, I can see why your oncologist is hesitant to give Herceptin at this point in treatment - that is an opinion 99.9% of oncologists would share under these circumstances. Although it is true that recurrence generally will occur in the bones or organs and not the breast, by having radiation treatment to kill any remaining cells in the breast she will greatly reduce the odds of a recurrence in that area, and it is important she has this. Generally, the pathway to the cancer cells spreading is through the lymph nodes because it is then circulating throughout your body. This is what chemo is for to help kill off any buggers running around. So again, the oncologist is providing her with another preventative measure by giving her chemo (even though there are no positive lymph nodes). This is a very appropriate plan of treatment that I would venture to say most oncologists would prescribe. It still has not been proven out with the clinical trials that by adding Herceptin early on will prevent or delay recurrence longer than the average time period (when it does happen - there are those out there who haven't had a recurrence and were not treated with Herceptin so go figure). Answers to other unknown factors will be even further out such as how does taking Herceptin early on (in a case like you wife's) affect its use later on in the event of a recurrence. Having said all that, I was diagnosed with stage IIIa cancer, 7 cm of DCIS, 1.2 cm and 1.3 cm invasive ductal carcinoma tumors, and 15 of 19 positive nodes, er/pr- and her2+(3). Had mastectomy, 4 rounds A/C, 4 rounds of Taxol, 28 days of radiation. Recurrence to liver 18 months after diagnosis (fairly average time with lots of positive nodes). Am currently on weekly chemo and herceptin and scan shows liver mets are little lines (and assumed to be gone). Will continue my treatments with chemo until such time we are comfortable with weeky herceptin as maintenance. I am telling you this for two reasons: I entered the clinical trial to add herceptin on original diagnosis and was randomized in the group NOT to receive it (and was very disappointed at the time). Now that it has recurred I am receiving herceptin (with chemo) and doing wonderfully well. The treatments do not make me sick, I work full-time and enjoy a perfectly normal, otherwise healthy life. Herceptin has proven to work best with cases that are Her2+++, and in my case, that is fact. I expect to be living a long and healthy life. After going through all this (and keep in mind my case was much more aggressive than your wife's) I would not be at all apprehensive with undergoing what is suggested and waiting later for the Herceptin. I also want you to know I still would not have gone outside for Herceptin early on. Although I was very disappointed in not getting the Herceptin through the clinical trial, I was secure in knowing it would be here if I needed it. Just, of course, my view. Best of luck to your wife - I am confident she will do just fine.
Kitty