Herceptin without chemo

Hello, thank you for starting this thread, Eileenohio. I've already had a lumpectomy (with clear margins) and intra-operative radiation therapy on Feb. 29th, and the radiation oncologist says it's borderline whether I'll need regular rt. Oddly, I'm not very afraid of the cancer. I believe that with treatment I'll beat it. But I'm terrified of chemo. I don't meet with the medical oncologist until Tuesday. The surgeon said I could have Herceptin without regular chemo, but what I've read elsewhere indicates otherwise. It's nice to know that at least some people, like Nana2three, are getting H alone.

How do you find an oncologist willing to administer Herceptin without the rest of the chemotherapy?

I was diagnosed in February with Triple positive IDC.  My Med/Onc is part of a large University System and I was offered the Hercpetin only.  The standard of care for all Hers+ BC is TCH or other chemo agents + Herceptin.  I turned down the Herceptin since my MammaPrint came back low risk and I was then offered Taxol + Herceptin.  After turning that down, I was offered just Herceptin (plus Tamoxifen).  I've worked in Heathcare for almost 20 years and after doing extensive research on early stage/low grade Her2+ BC, I decided I would not do chemo, unless my distal recurrance scores were unfavorable.  There is more information forthcoming about the additional genomic testing and the impending data on low risk Her2+ BC.  Stay informed and always know there are options.  From the beginning I took the emotion out of this and only reacted to facts and data.  Best of luck to all.

I have HER2+. I had successful lumpectomy 3 weeks ago. Now, I have to decide: Herceptin only or Herceptin + chemo. Your post was four years ago. Can you give us an update on your results?

Hi, SassyWell. I truly hope you're still actively on this blog. I am desperate to avoid chemo and go strictly on Herceptin for a number of reasons. All my life I have never taken Western medicine, only Chinese herbal medicine. So now, in the U.S. whenever I try Western medicine, my body reacts terribly, and chemo is bound to hit me a lot harder. Meanwhile, I feel my diagnosis (very small early stage HER2+ tumor) and excellent progress so far (100% successful lumpectomy) qualifies me for Herceptin only, even though my oncologists (two so far) don't agree. Can you give me an update on your Herceptin-only results? Can you tell me the name of the university you mentioned that supports that approach? I'd be forever grateful.

Shijiezang,

At the time I was diagnosed in 2002, the trials for Herceptin were in progress although I knew nothing about them, and when I asked to participate in clinical trials my onc did not tell me about the one I would have been qualified to participate in, nor did he mention anything about them to me. So I've never had Herceptin, and I very reluctantly did chemo for stage 1 ER+/PR+ HER2+++ 1.9 cm bc with negative nodes. Had I known about Herceptin (and the "ethical basis" for including chemotherapy with the Herceptin) I certainly would have chosen to do it w/o chemo. The net is that because I had CAFx6, there is no certainty as to whether or not the chemo was of benefit to me.

However, a very reliable person I know personally whose tumor was similar to mine chose not to do chemo and went to an independent oncologist, who supported her request for Herceptin only. She also did 3 years of an AI before stopping that, and is now 9 years out w/o recurrence.

Because the original clinical trials were done with chemo, some insurance companies started out requiring both. To me this is the unfortunate result of the bias involved with clinical trials when it comes to very early stage bc. Some point to the limited success that was achieved when Herceptin was given alone to metastatic HER2+ bc patients, but that position assumes without proof that patients who have no known tumor burden would be likely to have the same results as those who clearly have a demonstrated far greater tumor burden. I don't buy that lack of proof.

A.A.

I had chemo + Herceptin. I finished chemo almost nine months ago and will finish Herceptin in two weeks. I just want to reassure you, ShijieZhang, that even if chemo is unpleasant for you, someday it will be a distant memory and you'll have the peace of mind knowing you did everything possible to fight this cancer. It really isn't bad for many people. I had taxol only, but I have a friend who is going through AC+T right now and she's doing great. You can get through this! The reason your doctors want you to do chemo is to give you the best possible outcome.

I have a similar dilemma to ShijieZhang.  I have an unusual combination of grade 1 (mitotic grade 1) tumor that is highly ER/PR positive but also HER2+, 2.4 by FISH.    From what I have read, I don't feel that chemo will be very effective for me but the 3 oncologists I saw did not deviate from the standard treatments of either Taxol/Herceptin or TCH.    I was really hoping for Herceptin only or Herceptin with a lighter chemo like Navelbine.   But I am not certain enough to insist on my own regimen. 

My treating MO did recently order an Oncotype DX test for me but the result won't come in for another 10 days or so.   I am not sure what the results will be or if I can make a decision on a low recurrence score if I am still HER2+.  I am coming up on 8 weeks from surgery, so I went ahead and scheduled Taxol/Herceptin to start next Friday.   My MO did say I can stop chemo treatments if I have problems and/or my Onco score is low. 

ShijieZhang - Perhaps you can ask for an Oncotype DX test, which is not normally done for HER2+ cases.  But  my insurance approved it because my tumor size was 1 cm or less.  So if yours is small, it wouldn't hurt to get more information about your BC.

Hi Nibaum:

Just to clarify, the fact that HER2-positive patients are not formally eligible for the Oncotype test for invasive disease likely reflects that the test is not sufficiently validated in HER2-positive patients, and hence may lack prognostic or predictive value in HER2-positive patients. That is my layperson's view.

Consistently, consensus guidelines from the NCCN (Version 1.2016) as of this date, do not include the use of the Oncotype test for HER2-positive patients, but only for certain hormone-receptor positive, HER2-negative patients.

However, I am a layperson with no medical training. I may be unaware of specialized information. Therefore, this information should be confirmed with a medical oncologist, to ensure receipt of accurate, current, case-specific expert medical advice from qualified medical oncologists regarding such testing in any particular case.

If a HER2-positive person has received such testing, they should inquire with their medical oncologist specifically whether current guidelines provide for the use of the Oncotype test in their specific case or not, request an explanation of the quality and scope of validation of the Oncotype test in HER2-positive patients in general and in respect of HER2-positive tumors the size of their tumor, and whether any such evidence that is available is sufficiently robust to rely on for decision-making purposes in their particular case.

BarredOwl