Is it actually better to be Her2 positive than not?

my MO told me that since Herceptin her2 survival rates are almost the same( by stage ) as her2 negative.  Now I don't know if that compares all her2 negs or those with a certain grade of tumor.  IMO there are way more her2 negs diagnosed (over 70% or something close to that) so you would see more total number of relapses but close to the same percentage

either way its great news for us her2's!

I am ER/PR-, HER2 +.  At 6 1/2 years from the end of herceptin, I am told that my chance of recurrence at this point is almost zero.  At ten years, I was told I should consider myself "cured."

grandi - Are you sure her onc said scans, and not just appointments with possibly tumor markers or blood tests?  I don't know anyone, of any stage, who has scans every three months.

just spoke to her again. She said that looking at the heart is every 3 months but the other scans, we are assuming like bone scans,etc., is every 6 months. It still doesn't make sense to me.

grandi - the echo or MUGA every three months is normal while on Herceptin, the majority of us have that.   an assortment of Bone/CT/PET every 6 months sounds off to me, and excessive radiation exposure.  I had a pre-chemo PET, a post chemo PET, then one a year later, but none since and I was stage 2B, node positive.

Sassa, I want your onc! Mine never gives an optimistic word, but I trust her skills and her2 expertise so am sticking with her. You just tell me all the good stuff your onc says and I'll believe it!

bad, I had the same thoughts reading people's tag lines on the board.  It seems like more ifthe women with recurrences are HER2 negative. Maybe it is because there are just more of those to begin with.  I do believe Blue Fox is correct.  I spoke to my BS at the last appointment and was telling her about the vaccine trial I am in targeting Her2.  I said I wish they could do something like that for triple negative women.  She told me the good thingaboutbeing trip,e negative was if you get to 5 years, you have virtually no risk of recurrence.  

Kay g, which trial are you in?

BlueFox - What do you think of triple positive with a grade 3 tumor?  I know ER+ Only is Typically a grade 1 or 2.  That makes their risk level the same for many years before it drops off.  Can the same be said for triple positive?  Does this lower our risk significantly after 3 years because of the higher grade tumor?  Or do we need to be concerned with the ER+ risk later (7-20 yrs)?

KayG,

I was referring to the ER/PR status.  I am ER/PR negative, am now far enough out from my herceptin treatment that the benefits of herceptin no longer exist for me.  Therefore, my HER2+ statusis  no longer a factor in my recurrence chances.  Instead I go by my ER/PR negative status and look at recurrence rates for ER/PR- tumors.

ER/PR negative, HER2 negative tumors (known as triple negative) and ER/PR negative, HER2 positive tumors are both very aggressive and have a tendency to reoccur within the first 1-3 years after finishing chemo.  By five years after chemo, the chance of reccurrence is very low, about 1-2%.  The risk keeps dropping and by 10 years,while never completely disappearing, is so close to zero that it would be rare for a recurrence to happen.  If one did and the tumor had the same pathology as the original diagnosis, it would be ER/PR-, HER2+.

ER/PR positive, HER2 negative tumors are using a grade 1 or 2 which means they are slow growing. So after treatment (and usually a hormone blocking drug is given for 5 years).  The hormone blocker prevents the cancer from getting the ER/PR that it need to grow and a cell may just be dormant.  After treatment ends, the ER/PR positive cell may slowly start to grow and a patient is eventually diagnosed with a recurrence. That is why after 5 years out from diagnosis, there is a slow rise in recurrence occurring 5 - 20 years after the original diagnosis. Again if the second tumor has the same pathology as the first, it will be ER/PR+, HER2+.

An ER/PR positive, HER2 positive tumor is usually more aggressive and a grade 2-3.  Treatment will involve herceptin and the hormone blocking  drugs.  About the time the effects of the herceptin are no longer working (4-5 years after treatment), the hormone blocking drug 5 year treatment period is also up.  Because the herceptin is no longer working in the body, the ER/PR+ status becomes important for reccurrence risks and they are as stated for the ER/PR positive, HERE 2 negative tumors.  If there is a recurrence and it has the same pathology as the first tumor, it will be ER/PR+, HER2+.

not sure if I explained incorrectly, but that is what my onc told me as well.  She did tell me current thinking is all hormone positive people should be on hormone therapy for ten years rather than 5.

 After 4 ac and taxotere which had a total bad reaction to.  Left me with some toenails loss ,    Neurotomy     I only got to have one treatment of herceptin when heart showed damage . Er-pr-hers2 pos  stage 111b grade 3.  IBC and Idc .    Plus the cherry on top brac 2 gene.  Have had bilateral mast and sentinel node  I pos 13 neg.   all left side .  No reconstruction for year or more because of IBC watch .  So ovaries removed In near future because of brac 2  .  I guess I don't have a very good attitude .  I'm sad when I read how great herceptin is and I can't have it.  Not unless heart recovers, then maybe .   So I  am on symptom watch and scans and blood antigen tests .    If that doesn't turn me in to a hypochondriac  I don't know what will. 

     Just found tiny lesion /meningioma on anterior middle fossa of brain.   The sudden occurrence of on and off headaches and  unbalance was just dismissed as post chemo and weakness (used to be a gym addict lifting 40 pounds of weight, planks , squats.   Oh how I miss that.  Anyway neurologist consult told me I don't need him.    So see rad onc and onc next week.  Routine blood work.    But how in the world can anyone tell me how long this growth in brain has been and if it is fast growing never had MRI  before .   He said it's b9.     Good.  Made me crazy .  Still am.   What is my prognosis     Hate the cards I was dealt.   I know this is long , but have a lot to get off my chest .  Thanks for being here  

Linda- God love you and thank you! My last chemo was today and this is the cherry on top!

What does ER+ PR- HER2+ mean? I haven't seen anyone that has that diagnosis. 

I also am PR+/ ER- and her neu.  I am trying to find more information.  I have read that tamoxifen may not be as effective and that this classification is more aggressive.  My tumor was 2.0 cm but sentinel node biopsy said no lymph node involvement.  Lack of information is in itself ....scarey.