Why can't I get herceptin without chemo?

Hi Blythers,

I am also triple positive like you and also stage 1.  My oncologist had me do surgery (partial mastectomy), chemo, radiation, and now I am doing herceptin and tamoxifen.  My cancer was an aggressive form (Her2 positive and grade 3), so we treated it aggressively.

Hope this helps.  There is a triple positive forum filled with experienced ladies in our situation; if you were to post this question there, you would get even more answers.

Hope this helps!

There was a woman getting Herceptin, only, at Kaiser Permanente (my health care provider).  She refused chemo, but wanted Herceptin and received it--no problem.  I guess it depends on your insurance. I had chemo first, then Herceptin alone, which is not the standard of care.  I hope you receive what you believe is best for your case.  Good luck!

I am stage 1a, and chose herceptin only. My oncologist highly advised chemo, and hormonal therapy. Because my oncologist feared I would do nothing she gave me herceptin only. Whatever the oncologist recommends pretty much is what the insurance company will do. If your doctors says they strongly recommended both ar none then perhaps your insurance will to. For example, my insurance said they only approve 2 mastectomy surgeries. I've already had two and will definately need one more to improve my new or do something to give me simetry. I called my insurance company and they said it is the surgeon who must make that call that is if I need another surgery. They will order it giving reason for it and if it's good enough they approve. So..get a surgeon who is fighting for what you want.

One of my breast cancer surgeons said there were very few oncologist she knew who had good bed side manners. I don't know if this is true or not, but I would shop around for someone who will listen to your wishes. It's your life, and you are the one who will live with it.

Blythers,

Let me put this in straight language.  You are HER2+, that makes your cancer aggressive.  HER2+ breast cancer  can also spread through the blood and not go through the lymph nodes.

You can not wait until November to change your insurance.  If you do, you a chance ( 1 in 4 or 25%) of finding out that your cancer has metastasized outside the breast.  In that case, you will face a lot rougher treatment in the hopes of possibly extending your life for a few more years.

Get into treatment now and you will probably be a long term NED (no evidence of disease) breast cancer patient.

Hi Blythers,

Until trastuzumab (Herceptin) was used, HER2 positive used to be one of the worse types of breast cancer to have. Those who not only are HER2 positive but also hormone receptor negative (like Sassa) are helped by Herceptin but not endocrine therapy, so they have a more dangerous form of breast cancer than those who are ER/PR positive. Sassa is right about her form of the cancer.

Your question is a very good one, Blythers.  Whether or not a therapy is very useful, many people tend to think the more toxic (awful) a treatment is, the more effective it is, which is not accurate, but it does make them feel like and believe they are at least using something to try to beat the disease. There is nothing wrong with that, other than it is important to understand that chemotherapy in general is given to a huge number of people with early stage breast cancer, most of whom get no benefit from it and many of whom have side effects from it.

You will hear some say that when Herceptin is given with chemo, it makes the chemo more effective. However, that is not yet certain. The reason is not yet certain is because the trials that were done with chemo and Herceptin did not include stage I breast cancer patients, and also did not test whether or not Herceptin used alone was as effective, more effective, or less effective than chemo plus Herceptin.

So it is more accurate to say instead that chemo plus Herceptin works better than chemo used alone.

Initially, it was easier to get trastuzumab without chemo, but once the trial results were used for approval by the government based on the use of chemo plus trastuzumab, insurance companies tended to go along with that. 

Again, those who are triple negative have good reason to focus on the use of chemotherapy as part of the treatment.  The stardard recommendation even for those who are not triple negative is for chemo plus trastuzumab.

I did chemotherapy myself because my oncologist was not honest with me about the value of it for triple positive patients. At the time I did treatment, trastuzumab had not yet been approved and was still in trials.  I asked specifically about participating in any clinical trials, and he failed to tell me that there was a trial for trastuzumab that I would have been eligible to participate in. At the time I did treatment, the only treatments available to me were radiation, Adriamycin/Cytoxan/5-FU, and tamoxifen. The aromatase inhibitors were not yet available to those like me who did not have mets. So I did rads, CAFx6, and some tamoxifen.

At present, there is a clinical trial being done that uses trastuzumab alone for bc patients over age 70. Hopefully that will provide better information about the use of trastuzumab alone.

You should not postpone treatment very long. If the unknowns of using trastuzumab alone for early stage triple positive bc are preferable to you, you should know that others have refused chemo and have been prescribed trastuzumab.

A.A.

I would like to point out that my post about HER2+ cancer spreading through the blood is entirely about the HER2+ component of breast cancer.  DO NOT let a naysayer tell you I am speaking from being ER/PR negative.  While that may have factored into the aggressiveness of my BC, it was the HER2+ component which caused the worry about metastasizing even though I was node negative.

THanks for the info girls! Learning more every day.

Hi westiemommy,

I'm glad you have given consideration to your options, and have found an onc who supports your decision.

It also allows you one MORE option for the future, in that those who choose chemotherapy the first time around have less reason to chose the same chemo again if they recur.

I hope you will update from time to time, in support of others who may be faced with a similar basis for their choice.

A.A.

is anyone still on this thread I'm wanted to see.how everyone is doing on herceptin only. I'm her2 positive with a 2.5mm and 1.5mm and I'm not want to do chemo and herceptin. My doctor did offer me herceptin only.

I just wanted to chime in with my treatment. I was prescribed TCHP x 6 rounds for HER2 positive IDC. Because of some concerning SE's, I was seriously considering quitting after the 3rd round. One of the options that I was given was to continue with only the Herceptin and Perjeta - so that is sometimes done.

In the end, I opted to continue with the treatment plan and only substituted Neupogen for the Neulasta I had been receiving. I figured I would be very upset with myself if the cancer came back and I had not done what was recommended (even though there's no guarantees on anything). I have one round left now.

I had asked for herceptin only from my onc at Kaiser since I was Stage 1 and was refused. Glad to hear Kaiser is allowing this for some patients.

I did not want to do the TCH regimen recommended, so I was glad to be offered a clinical trial that I got approved for through secondary insurance. The randomized trial offered Taxol + Herceptin (25% of participants) and TDM1(Kadcyla) to the other 75%. TDM1 is Herceptin with 1 molecule of Emtanzine (Chemo). I got assigned to TDM1, have done well on it and am approaching the end of my 1 year on the drug.

I wish you the best and hope that you find an oncologist that you feel comfortable with --- it makes all the difference.