Her2+ but no Herceptin offered!

harrison · 03-04-2007, 09:10 PM

Could there be any reason at all for my oncologist to not offer herceptin to me? I was DX'd in July of 06 and was ER+, PR+, and Her-2+(3+). My tumor was .08 cent. I was 39yrs old, lymph nodes were negative. I started the chemo 10-06 so Herceptin was approved then right? I have just finished radiation last week and will have an appt. w/onc three wks. from now.

Karen Weixel · 03-04-2007, 09:29 PM

Although my tumor was a bit bigger (1.3cm), I was also node negative. My onc did not want to give me herceptin because he felt my prognosis was good and the risk outweighed the benefit... it was just approved for early stage disease when I finished my chemo.

I went in front of a tumor board and to Stanford Medical Center for 2nd and 3rd opinions. Of the 4 oncs I saw, 3 of them recommended I take Herceptin. I went back to my onc ready for a fight and to change docs if necessary and he had, had a change of heart.

If I were you, I would get another opinion because you have the right to receive Herceptin if you want it.

Karen

momdeeco · 03-04-2007, 10:10 PM

My turmor was 1.1cm., node neg. Each time I had an appt. with the oncologist I would ask about Herceptin. She continued to say I was node neg. and it wasn't recommended. I went for a 2nd and third opinion, and am now receiving Herceptin. It is important that we become informed about our health care. We need to know we have choices, and choose (and pray about) what is best for us.

vickie h · 03-04-2007, 11:17 PM

Ask for the Herceptin! Get another opinion if you can, it is like gold! Good luck and hang in there> Love, Vickie

03-04-2007, 11:32 PM

National Cancer Guidelines don't recommend chemotherapy for node negative tumors smaller than 1 cm. Since the practice until now has been to give herceptin together with or after chemotherapy, your doctor may be following this guideline. My oncologist was very open to giving me herceptin without chemotherapy, although he recommended both. My tumor was 5mm and I also was node negative. I've been on herceptin now for six months.

Be forceful with your doctor if you want herceptin. Forceful works most of the time.

03-04-2007, 11:34 PM

M apologies Harrison. I missed that you have been on chemotherapy. If your doctor is willing to give you chemotherapy with an 8mm tumor, he or she should certainly be willing to give you herceptin as well.

janet/FL · 03-05-2007, 10:20 AM

I agree with Grace. They will give you the big guns that have a lot of side effects, but won't give you Herceptin? Makes no sense.
My tumor was 9 mm and I was offered Herceptin alone or with chemo. I choose Taxotere and Herceptin.
Good luck. Change docs if necessary--I had to!

CPA · 03-05-2007, 11:35 AM

Will you be receiving an AI or Tamoxifen? You should probably ask this question as well if it has not been discussed with your onc.

Hopeful · 03-05-2007, 11:51 AM

I did some reading of past Breast Cancer Update: Patterns of Care publications http://www.patternsofcare.com/issues.asp, and it seems that offerring Herceptin to patients with tumors under 1 cm. who are hormone positive has been a controversial issue among practitioners. It could be community practice where you live. This is not to say you should give up - continue to seek other opinions and insist on it if you must.

Hopeful

Adriana Mangus · 03-05-2007, 01:14 PM

At Kaiser in Southern California, patients who had finished treatment years prior to Herceptin being approved, ( and prior to testing women for this type of protein) were called back into the onc'soffice and those who tested HER+ were offered Herceptin. Maybe you do need to change your onc.

MJo · 03-05-2007, 02:45 PM

I had a 5mm tumor (1/2 centimeter) with neg. nodes. My onc recommended Heceptin. I went for a second opinion and that oncologist recommended Herceptin, and so did my Surgeon when I went for my follow up appointment after the lumpectomy. I would get another opinion if I were you, so you don't look back and say "I wish I'd done that."

suzan w · 03-05-2007, 02:58 PM

as you can see by my signature, I had a small tumor, node negative. The surgeon who did the bioipsy and the oncologist I first saw recommended a larger lumpectomy, rads, no chemo or herceptin (because it had not been approved in early stage treatment yet.) I went for a 2nd opinion and the recommendations were for the total opposite! THe surgeon strongly recommended a bilateral due to the type of cancer and my oncologist was willing to give me herceptin even before it had been approved by the FDA for early stagers. It is too bad we have to fight so hard for what is our best outcomes.

harrison · 03-05-2007, 09:46 PM

Thank you all for responding. I have a few things to add to my post after reading all of these replies. The tumor was a grade 3 if that makes any difference and I had a lumpectomy. I had two opinions from two oncs. and neither of them mentioned Herceptin. I did not think I needed chemo. Both said I did. I never even thought I was a candidate for Herceptin until I started lurking on these message boards. Do they get a letter in the mail or something that states in big bold letters HERCEPTIN IS NOW APPROVED FOR NODE NEGATIVE PATIENTS? All these decisions were being made around August when you all have said it was approved for node negatives. Can't wait to talk to my onc.

juanita · 03-07-2007, 03:29 PM

I was node negative and still received the herceptin. My onc thought that it was a good thing to do.