Recent diagnosis in recurrent bc with Her2+

I am new to these boards and would like to ask a question since so many of you seem so knowledgeable. I recently had a mastectomy due to a recurrent infiltrating ductal carcinoma , 0.7 cm with dcis, Grade 2, no nodal involvement, er+ 85% and Her+++. Seven years ago I had a 0.8 cm idc that was er + and Her - with no lymph node involvement. I had a lumpectomey, rads and took Fareston for 5 years. This latest recurrence is a new primary tumor and not related to the first one. After this latest diagnosis and much discussion with my onc, he says that my best course of treatment is for me to take Tamoxifen for 5 years (I am still premenopausal at 52 years old) which he thinks will put me into menopause and then he will switch me to an AI. When we discussed chemo and Herceptin he stated that the model he uses to compare recurrence rates for someone with my status indicates that the hormonal therapy will provide as good a benefit as doing chemo and that the risks of giving the chemo just to get the Herceptin outweigh the benefit. I got an article off of this site that discussed the possibility that Tamoxifen therapy may be adverse to women who are her+ which I gave to my onc. He did some research and said that while the information is intriguing, there isn't enough data to support my not getting Tamox. I do not feel uncomfortable with my treatment plan but would just like to get some opinions from those of you who might wish weigh in on the matter.
Thanks very much for a very informative site.

Petesmom

I don't have the documentation for this right now, but I believe in my research I came across information that Tamoxifen was not very effective for ER+ women.

Anybody else have something more concrete on this?

Hi- All I can add is that my doctor took me off tamoxifen four years ago after being on it for one year. He switched me to arimedex because he said there were less side effects and I beleive one of them had to do with the heart. God Bless- Cathy

It is frustrating not to be able to look inside ourselves and watch the physical process that goes on, because it is so puzzling and uncertain and yet it goes on right here with us all the time.

I don't know what to think either about the choice you are considering, since of course even Herceptin doesn't work for everyone. I did drop off tamoxifen after my internist discussed the tamoxifen/HER2 issue with my oncologist, who recommended I switch to Arimidex.

I wonder in hindsight how long it takes for the tamoxifen/HER2 mechanism to "go to town" so to speak. I was on tamoxifen for over a year and quit last summer and am still NED. Well, at least as far as we ever know, I am.

There is still the question, though, whether you might want to simply add Herceptin as well to simple maintenance tamoxifen.

A.A.

[StephN]

Hi and welcome.
Since this is a new primary, are they staging this as if you have never had BC before?
Since the pathology for the new tumor is so different from the other one, I would feel that an aggressive approach would be best, but being node neg, the doc may not feel that way. You have had a recurrance and it is a more aggressive type, so really consider getting Herceptin at a minimum, and I don't understand your onc's comment that you have to "take chemo just to get the Herceptin."

There are lots of women who are getting Herceptin, who are NOT stage IV, and not getting chemo. Your med onc just has to find a way to get it prescribed so that your insurance will cover it. If he won't, try getting a second opinion and maybe you will find a doc who is willing and does not have to be prodded into giving you a drug that is protective in your case.

You are so close to the time when menopause should occur, maybe it is a good idea to take something to hurry that along, then you have some different options. (Being hormone neg and already menopausal when my BC was discovered, I do not have the specific drugs in mind.)

You've gotten some great advise, but I would like to add mine. Your doctor can give you Lupron to put you into menopause. Femara and some of the newer drugs are working so much better than Tamoxifen. I was on Tamoxifen for four 1/2 years and continued to have my period. That means my body continued to make estrogen - whether that caused the relapse, I don't know, but I am sure it wasn't very helpful. As Steph stated, you can get Herceptin without chemo, although I am pretty sure Herceptin in conjunction with one of the Taxenes seems to be doing a pretty good job. I would highly recommend a second opinion. Your doctor should not be offended and if he is, then it IS time to get a new doctor. Right now the most important thing is YOU and YOUR treatment, not someone's ego. God luck and God bless...

..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

Stage IV Inflammatory BC 1/00
MRM 24nod/5+ Her2+
Adriomycin Cytoxin Taxol Tamoxifen
Rads 32x
Stage IV Mets to lung/liver/nodes 10/04
video-assisted thoracoscopy (VATS) surgery w/pleurodesis
Herceptin Taxatiere Carboplaten Femera Lupron
4/26/05 NED

I would have to agree that Lupron injections to shut down your ovaries and Herceptin for the Her2 positive factor seems to be the best bet. Get more than 1 opinion....and then sort out your options.
Hugs
Sheila

To all of you who replied to my question, many thanks. I am making an appointment to discuss my treatment plan further with my oncologist and will seek a second opinion if he does not want to pursue looking into this further. Since this recurrence, I have suspected that my estrogen status has been a real factor is all of this. I did take a tamox derivative for 5 years and the cancer recurred the year I stopped the meds. That medication did not put me into menopause which my onc thought would be the case. I had an FSH level done a month ago and wasn't anywhere close to being near menopause Anyway, thanks very much to all of you for taking the time to reply. I am going to further explore the possibility of getting the Herceptin but my gut tells me that my estrogen status is the major culprit here. Thanks again and blessings to all of you.

Petesmom