When do most recurrences for HER2 happen
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Lago,
Re: risk not going down as quickly for triple positive as it does for HR-....did you hear that from your onc, read it in an article/study - or read it on the boards?
The reason I ask is that I have never seen data that suggests this. I have seen one member post it a couple times, but she never sites a source, even when asked. So I am anxious to see the data if it actually exists.
Thanks
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I just questioned a panel of highly regarded Oncologists at a respected Teaching Hospital about this very question. And the answer from all of them was an unequivocal it is the same for er+ and er- if you are Her2 positive gal and had a year of Herceptin. They state it most strongly applies to highly aggressive Her2, grade 3 tumors. The ER becomes much less significant after 3 years for highly Her2 gals. I asked for the research and apparently they will forward me different analysis that points to this assumption. They also state that many of their colleagues all over the country have been discussing this since the most recent San Antonio Conference that Dr. Slamon presented at.
I made a call to an Oncologist at UCLA last week who I work with and he also stated that this is the theory for grade 3, high ONCOTYPE Her 2 tumors but that until Standard of Care is updated from studies that can't make that recommendation but see's it being as such in the next 5 years.
As a triple positive who has scoured the data on Aggressive grade 3 tumors I am becoming more in line with this type of thinking.
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Check the tread about Tamox and Her2 on this site, it also suggests that many young women are also hearing this same idea from their Onc's and one such Onc at Sloan Kettering is discussing this theory as well.
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I think you misunderstood. I said "I'm not sure the risk goes down" Not "I have read"
I was also comparing ER/PR- HER2+ with ER/PR- HER2+ ad being the same if herceptin was effective. If you are hormone positive I'm not sure you can make the same comparison.
Just opinion and logic not fact based on any study.
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Thanks Lago. I wasn't trying to grill you, just trying to find out if I had missed a study.
Thanks mmm5 - your oncs always seem to have the latest news (even before publication), so I am always interested in what they are telling you.
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You know what, I think it is all a crap shoot. I never know what to believe and I DO NOT want to encourage anyone to change treatment that their ONCS prescribe. In the end we get a lot of opinions and thats what they are "opinions", we then have to decide based on our intuition what is best for us and whose opinion we most trust!
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Wow, this has been such a wealth of information. Thanks all.
V
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How about the risk of reoccurrence while on herceptin?
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saralmom
Hi. Well lets see if I can help a bit, Tamox is given to premenapausal then they go to Al such as Arimidex (my drug). I started off with Tamox but was still showing high tumor markers so they removed my ovaries and switched me to Arimidex which has lowered those markers down to a normal range. I read 2 studies that Tamox was not as well recieved with us her2 babies, but AL's were drugs of choice. Do not fear most studies are exactly only that and no one knows for sure which is the better drug, each of our bodies react differently to different drugs so your Dr will determine which is best for you. You can if you feel it necesary get your path report for your her2+ numbers but really this only determines how sure they are that you are her2+ and if you had the FISH test it is usually the best one, my opinion, daughter works in pathology, the numbers are just scarey little guys we should leave up the the Dr's we pay big bucks to. Now tumor marker numbers I do insist on, some Dr.'s do not give these numbers out but listen I have had too many friends who have had recurrances and found out because of tumor markers. 40 is in the normal range anything above that and they keep an eye on you, but as always there are those of us who carry higher numbers all the time, sorry to confuse you. Relax and breathe it is all in God's hands.
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Do they always test for tumor markers? For some reason I didn't think they tested me for that.
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Lago - It depends on the onc.
The stats show that there is no significant difference in survival for women who are checked for markers and for those who are not.
My onc, for example does not believe in checking markers. He believes it causes unnecessary stress and unnecessary invasive tests which won't contribute to survival.
He will agree to test me if I ask him to, he just doesn't recommend it.
I feel quite comfortable with that.
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3daywalker well stated. When I see the onco again in April I don't want a % just the words "good prognosis" will do. I obssessed about stages, grades, etc since July. Now I want to breathe. I'll start arimidex as probably around that time, he's already told me. When this party began the BS told me I was mildly HER2+ and maybe not even enough to get Herceptin. The oncologist said "you either are or you aren't." I'm on the Herceptin train. libray lil0
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Hi 3daywalker,
Could you give the name of the studies you read about tamoxifen and Her2+. I am always interested in the question of tamox vs AI for Her2+ cancer.
I have seen studies that show Her2+ dont do as well on tamox as Her2-, but that is to be expected because historically, her2+ didn't do as well in general as Her-. But I have never seen a study that directly compared Her2+ on tamox vs. Her2+ on AI. I would really like to see such as study if it exists.
If you don't have a study name - publication/date, or author - I may be able to find it.
Thanks so much.
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Just had my four year since chemo (3 since end of herceptin) doctor's visit and I am still NED.
I was told my risk of recurrence starts to drop steeply now.
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Congratulations Sassa!!! That's is great news!0
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Sassa Wow… that's awesome!0
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Love hearing that Sassa!
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Congratulations Sassa!!! Here is to many, many more years NED!
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Great news, Sassa!
What type of follow-up does your onc do for you?
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Awesome, Sassa!!!
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lago.... love ur happy dance video.
ray
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Okay ladies, so is there a definitive answer to when the clock starts ticking on your risk of recurrence? I finished Herceptin December 2nd 2010. I finished chemo March 31, 2010. I was diagnosed August 09. Had my mastectomy October 09.
When they say your risk is highest within 4 years, from what are they counting? To me, it makes the most sense that they would start counting from the day herceptin is finished. If that's the case, I'm entering the danger zone. If it's from when chemo is finished, I'm 1/3 of the way through the danger zone. If it's from the date of dx, then I'm almost 2 years out and only have 2 more years to worry.
) I'm not really worrying that much but would like to know. Thank you ladies!
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I see my onco is April and I'm going to pin him on this. He hates to give numbers and I don't want a percentage, etc. Just info. libraylil0
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lil - My onc doesn't give numbers either. I realize he is actually very quiet. Maybe it comes from dealing with cancer for 25 years.0
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Mine doesn't give percentages eiither - he says "herceptin is too new to know." But, I'm not asking for a guarantee or a promise, just odds. I know it can come back in 20 years or tomorrow. However, there has to be some protocol they use - when do they start counting from? Each woman in this thread has said something different!
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When I first met my oncologist and he told me about Herceptin he left out the aggressive factor etc of HER2, but he explained the Herceptin trials to me. He told me this is something a Dr. sees once in his lifetime if he is lucky. We are all so lucky this is available to use. If you get a chance to pick up the book about HER2 and Dr. Slamon used online order and read it. A lot of it you'll skip over. I wish I'd kept my copy, but passed it on to the chemo nurses. Now that I know a little more I'd like to reread it. libraylil
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I read the book.
I don't understand your post - a doctor sees what "once in a lifetime?"
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I think libraylil is saying that a doctor sees the drug he/she has created perform miracles once in a lifetime (Herceptin). 0
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Right Kathleen, at least that's what I thought. Actually, I thought he meant that for him personally to see this advance in BC treatment was wonderful because before Herceptin our prognosis would not have been so great.
libraylil
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lirarylil
My onc said just about the same thing in so many words. He said Herceptin is the most powerful and significant thing they have seen in the oncology world in the past 10 years. I thought that comment to be pretty amazing. Now I know why he was almost giddy when I tested positive for Her2neu. Yahoo for Herceptin and Dr. Slamon.
Be well everyone
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