does everyone with her2 wind up with mets?

[Unregistered]

I have been reading a lot on this board and I have to say I am a little freaked out. Does everyone with Her2 wind up with mets? Can I expect this is what is going to happen if I do not take herceptin. It is not being offered to me as I had a tumor well under 1 cm.

[Rozebud]

No, absolutely not. You do have a slightly higher chance of recurrance, maybe 10% more. However, if you can get herceptin, I'd contiue to push for it.

[Unregistered]

Thanks Rose,
I guess I just need to hear someone say that. God knows you can't get a straight answer out of the doctors.

[Sheila]

not everyone ends up with mets, but I would take the Herceptin if you can....my tumor was 0.7, no + nodes, and I got mets....

hugs
Sheila

[Unregistered]

Sheila, Would you mind telling us what treatments you had before your recurrance?

[Unregistered]

None, other than a mastectomy....they felt 3 years ago that with a small tumor and neg nodes that was enough. Herceptin was not available then for stage 1.....1 1/2 years later I qualified with a recurrence, & steage IV to get Herceptin.....how things change!

Hugs
Sheila

[Unregistered]

Sheila do you think if you had had chemo or herceptin you wouldn't have gotten mets? Did you have any vacsular invasion? I know a hard question to answer.

[pattyz]

There is no treatment protocal to date that can guarentee no recurrance/mets down the road from original diagnosis.

[Sheila]

I will never know.....I had no vascular invasion....Herceptin is so easy to take....wish I had it earlier.

hugs
Sheila

[Esther]

Unfortunately there are no guarantees when it comes to mets. I had a bilateral with recons. Did a full course of chemo, A/C, & Taxol. I was stage 1, no nodes positive.

2 years after my initial BC diagnosis, I had extensive liver mets diagnosed.

[Unregistered]

I would like to say that even though I understand that no one is a statistic, we must take some comfort in the fact that there has been data kept on recurrence at different stages. The most current data indicates that approximately 90-95% of stage 1 patients have not had a recurrence 10 years after initial diagnosis, and this is from fairly old studies, certainly none are possible from the past five years with new treatments and protocols. And certainly any of us could fall into that small % that do have recurrence, and my heart breaks for those who have already had that experience, and trembles at the thought for myself. I am so happy every time I meet a 10 or 15 year survivor, and there are many. I thank God for the new treatments available now and for those on the horizon, and for the brave women who have participated in the clinical trials that have and are making them possible.
Dr. Sledge, at the ASCO conference in May said it this way: " We are reaching the "end game" for breast cancer". These are encouraging words from someone that counts.

[StephN]

"Dr. Sledge, at the ASCO conference in May said it this way: " We are reaching the "end game" for breast cancer".

From the above post.
Sure would love to know what in bloody hell he means by that.
Other docs tell us that even with ALL the research going on in many different directions, we don't know what causes this disease and why some get it and others not. As well has how to keep it from coming back and killing patients.

Please elaborate for my edification and to scare the little cancer cells dog-paddling around in my body.

[Unregistered]

Steph, I am sorry. I have been thinking alot lately that there is too much discussion on this board by those of us that are earlier stage patients. Now I know this for sure. So many of you know the realities of this disease so much more, and I am truly sorry. I have made a decision to really limit my visits here from now on. This message board has been a wealth of information to me and is so professionally cared for. I have benefited from many posts by you yourself. But to no fault of anyone's but my own, it has been the source of most of my "freak outs" too. And I feel I have no business posting on it again. I never re-registered after the new board, and I will keep my identity private, but I just wanted to say I was sorry and explain. Just FYI though, that comment by Dr. Sledge was made at the end of the video clip that is online of his presentation about Herceptin in early stage breast cancer. When he used the term "end game" he was referring to Herceptin and other targeted therapies on the horizon.
God Bless you.

[StephN]

Please do not take my occasionally sardonic attitude personally. Perhaps I come through as a little jaded at times, but did not mean to put you off with my reply. Your effort to contribute is appreciated.

You answered exactly as I wanted to know: Where did the quote come from, what context, and to what was he referring. Thanks! I am always up for "end game" talk if I can know more about it. There are often tantalizing hints from researchers and we just have to wait it out for the published results and any new therapy that comes as a result.

Since I had not had time to visit that video clip I did not have that hopeful reference. And HOPE is one thing that draws us all to this board. Without questions and input from all of us, no matter what stage our disease, it could get a little stale and uninteresting here.

I must confess that I was not in a very good mood when I reviewed the message board yesterday morning. A little hummingboard had just bonked itself into oblivion on my dining room window that I have a feeder near. It must have seen the feeder as a reflection. The mate was at the feeder and then flew off when I opened the French door to see what I had heard. We have tons of birds here and I know the hummingbirds as they will visit me when I sit on the patio making their little clicking sounds to let me know they are around before I hear their wings or see them.

Take what you need from this site - but remember that we have to make sure that we live with the knowledge that "we have cancer - cancer does not have us." Then we can go forward in some comfort and peace, even though it may take a little time.
You do have God on your side and all of our warmest best wishes. ;)

[Unregistered]

Amen to that!

[Unregistered]

I regretfully agree.