does every her+++ patient get recurrences?

I'm 9 months out from my diagnosis and am wondering whether (almost) everyone with a Her2+++ tumor will recurr. My tumor was small, 0,6 cm, grade 3, clear nodes and margins, no angiovascular invasion, ER and PR +, so it seems quite favorable. But reading this list has gotten me worried. Any thoughts on this? Did the woman on this list have more unfavourable tumors to begin with?

I am currently trying to decide whether I will start Zoladex and Arimidex to help prevent a recurrence.

Thanks for your input

Jacqueline

Jacquelin
My diagnosis was almost yours exactly, except my tumor was 0.7 and I was ER PR neg. I had all clean nodes, and then 2 recurrences in 2 years. My advice would be take whatever you can to prevent a recurrence...Tamoxifen, Arimidex whatever might be enough. No one knows who will or will not recur...I was one who shouldn't have and did. If I had to do it over, I would have insisted on more prevention.
Hugs
Sheila

I saw you replied to my post on the 30 year study. If you look at that, 70% of the her2 patients recurred over 25 years, but NONE of them got chemo back then! So, NO, not every her2+ person recurs, it just has a an overall worse prognosis. But even with that, it's not THAT much worse. In fact, that article says that if you're node negative, there wasn't much of a difference. I lose much more sleep over my large # of nodes being positive than I do over her2+.

That being said, if I was an earlier stage, I'd still do whatever I could to prevent a recurrance. Sometimes I get unnerved that I'm not doing more than someone with a less aggressive cancer is doing. But the truth is that there's not much more I can be doing....except sitting, waiting, and praying.

Hope that helps!

This is one of those questions that make me wish that all bc patients would find some way to create and be part of a huge bc database that tracks us all from dx until we die of whatever cause, because I think it would provide so many answers to the questions that take too long to answer with just clinical trials. Clinical trials are very limiting in comparison to what could be learned with that kind of database.

I don't have the answer to your question, Jacqueline. HER2+++, p53, and c-myc status may make the difference for all of us. But since we are not all tested for those and there doesn't seem to be any definite consistent tracking of us all long-term, it is harder to know the answer.

A.A.

I agree completely. I have often thought that a database would reveal much information.

love
lindaw

Just another thought - wondered how it could be set up . You could ask a range of questions /background information/history but the database would need to be able to add questions over time as other factors were revealed/thought of , etc. It would be so interesting and most possibly helpful.

love
lindaw

The database is a great idea....I've wondered why they don't have a lot more statistics on all of us with this disease. I was surprised how they ask you some questions in the beginning on your history and then that's all and even those weren't very thorough. Do some of the larger hospitals and clinics keep their own database where the results aren't published?

WHere i go everything is entered into the computer right in the office but it seems like its entered and nothing comes of it. I would think it would be looked at by some of the researchers somehow as it is a large Clinic.

I agree with AlaskaAngel about some of the "healers". and am also worried about recurrence with 2.7 cm, grade 2 er pos, neg nodes. think i am her2 ++ but have to ask if had FISH done.