I found out yesterday I am HER2+. Now, I thought this was a bad thing as it meant the cancer was more agressive and more likely to recur. However, my oncologist made out it that it was a good thing as the combination of chemo and Herceptin had better results - and at worse that the targeted treatment of Herceptin just “cancels out” the additional aggression and just takes you back to the same prognosis as if you were HER2-.
Is he just putting a spin on this? Everything I’ve read doesn’t seem quite so positive…
Thank you!
HIYA SANDY TOES
my best friend was her2 positive 6 years ago and had wle ,chemo,rads and herseptin. she is absolutely great now [touch wood]
I think at this point the literature read in isolation dosent reflect that it hasnt been out long enough to see the positives we will see in 10 years time as they havent had herseptin on the go long enough yet for good data
trust in your oncologist and only listen to the positive stories -that what Im doing now[hormone receptive]
Diane x
Hi Sandytoes,
I am also her2+. Yes it is right that it is a more aggressive cancer but since herceptin has been available it has made so much difference for many. It is hard to tell where it is being given currently to those with primary bc. But for those of us with secondaries - for me it has been a life saving drug. I was first diagnosed in 1990 before her2 was known about and it was only in 2004 (dx with 2ndaries in 2002) that all chemos were failing and they checked tissue from a mastectomy in 1999 and found I was her2+. My cancer has kept stable since then. My only word of caution would be that for a few her2+ patients herceptin has not worked but there are quite a number of new drugs in the pipeline that are being trialled alongside herceptin.
Dawn
xx
Hi
I would also trust your oncologist as much of the data on the Internet is before Herceptin and therefore out of date.I am also Her2 and in a couple of weeks time will be having my last Herceptin.Have had 17 cycles so far and have echos done regularly to check it’s not affecting my heart but apart from that and a few very minor side effects I have had no problems.
Tracy
x
I agree with your consultant. The evidence suggests that having herceptin makes your tumour the same as if it weren’t her2 pos.
Good luck with your treatment xx
You may also find that your onc won’t give you stats, because the data the stats are based on comes from before Herceptin was available to HERs+ ladies. He won’t tell me mine because he says they’re meaningless, but has said the same to me as yours did to you, that Herceptin cancels out the additional aggression of HER2+ tumours. So I just have to hope he’s right and not trying to pull the wool over my eyes. Thing is, availablility on a large scale is still pretty new, so he really does have a point.
Good luck.
CM
x
I am Her2 my onc has offered me my % prognosis for 10 year survival but he feels that the figures are inconclusive as the data includes HER2 patients before Herceptin was availbable to primary bc patients.He has also advised me that Herceptin makes the prognosis similar to the ER cancers and the numbers are continuing improve as more data becomes available. Herceptin only became available for primary bc in 2006 ( I think) so as you can see the 10 year figures are skued as they include patients who didn’t benefit from Herceptin treatment.
On this basis I have chosen not to know my " prognosis"
I hope this makes sense quite hard to put in words my onc explained it much better!!!.
T
Thanks everyone.
So far I’ve opted against knowing my prognosis. Mainly because I’m scared!! (Big lump, node involvement, HER2+ and under 40 which apparently affects prognosis too). And also because no matter what the prognosis you still have to try all of the options. Someone with a 90% prognosis will still have to go through their specific treatment and face the fight and hope that they’re not in the 10%! Just as if my prognosis were 30% I’d still need to throw myself heart and soul into the treatment and hope I’m in the 30%. You are either going to get better or you’re not. And we’re going to fight a bloody good fight and lots of us are going to see this horrible disease off!
That’s the message I was given. Herceptin is supposed to really get at any C cells and improve cure rates. I was told it was a positive and a negative to be HER 2+.
Luckily for most, it seems to cause the least probs of any of the treatmments.
take care
what with statistics anyway you could be 90% for a cure and then fall in the 10% so it doesnt really matter.
Im her2 and so far all treatment has worked well for me.
The Herra report on Herceptin is due out this month.
Hi Hatty
What is the Herra report?
thanks
T
There was a study called HERA (can’t remember what it stands for) that was looking at 12 months vs 24 months of Herceptin. Think that was the purpose of the study, but could be wrong, I’ve read so many things on BC over the past few months things get muddled inside my hairless head.
I think you could probably find it if you look on Cancer Research UK’s website, they have a fairly comprehensive section on various research studies that are being done.
I think its the hera report that is going to say how effective herceptin has been over the last 5 years.