HER2 recurrence

Hi there has anyone had a recurrence of her2 breast cancer. I was diagnosed in 2005, had 1st recurrence in 2010 and am now waiting for results on biopsy for 2nd recurrence. I only finished herceptin 3 weeks ago so it hasnt worked for me. I just dont know how to cope. i feel like its the beginning of the end as the’wonder drug’ didnt work, what else is there for me?

hi sunrise 13,
i was diagnosed with ibc last sept 2010 had chemo first then mx then reconstruction, plus 3 weeks of rads been on hereptin since dec 2010, had local reccurance ct scan was clear having op next week, to remove cancer cells from my recnstuction then some more treatment, i am still on the herecptin until jan but it looks like i am staying on it so maybe the hereptin have stopped it from spreading from the breast which is what my breast nurse have said to me today. so you are not alone.

i am also her2 positive, sunrise13

Hi lollypop59,
I feel a bit encouraged by your message as I had just assumed Herceptin hadnt worked for me at all, I didnt think it may have helped prevent a spread from the breast. Maybe they will put me back on it indefinately, its a good question for me to ask when i go for my biopsy results next week. I really hope you op goes well next week. Is that to remove thecancer cells only or do they remove part or all of your reconstruction too? I had reconstruction last year after 1st recurrence, I had the diep flap from stomach so no implant. Take care and hope to hear how op goes.

hi sunrise
yes i am having my reconstuction removed next wed, i happy that i have given you some encouragement in what i said i will let you know next week i will only be in for one night. thanks

Hi sunrise-I have just recently been diagnosed with HER2 Positive and after chemo and rads will be put on herceptin for 1 yr-I was reading your post and hope you are ok.I am 46 yrs old married with one son who will be 13 on New years day. I spend all my time crying as I am so worried which I know you understand.Having a recurrance must be scary but I notice you have had this after 5 years-I would ask them avout getting herceptin indefinitely-you should as it looks like it has been working. Hope you get it sorted.Take care

Hi lollypop59, I hope your op goes well tomorrow, will be thinking of you and fingers crossed for a speedy recovery xx

Hi jaxette, thanks for your comment, I am 45 and have a 14 year old stepson. I like you spend all my time crying, it is such an horrendous time. I hope the chemo and rads goes well for you. When I was diagnosed in 2005 I met other women at a support group who were also Her2+. They had Herceptin at the same time as me and have not had recrrences so please be very hopeful,you are getting all the best treatement and chances are high that you won’t get a recurrence, I was just one of the unlucky ones. Take care

Hi-I really hope you are doing ewell-its so distressing all of this stuff is nt it?? Thank you for being so supportive as is everyone on this site. I am frightended but just have to get on with it -good luck

hi sunrise 13 i had my op just over a week ago they removed the nodules and the silicone, he said it was successfull, but have to on the 31st to see if i need more treatment, but i will most defiently staying on the herceptin, how about you sunrise have you had your results yet i hope good news for you, take care x x

Hi lollypop59,
I am so pleased to hear your op went well. Have you any more news on further treatment? My results turned out to be good, much to my surprise. The lumps are fat necrosis and are benign. I was so relieved as I really was expecting bad news. I can honestly say waiting for those results was the worst week of my life. Take care and wishing you a speedy recovery xx

Just wanted to wish you all the best of luck ladies, I am also her2+++ its a constant worry. However please remember that the best weapon you have is your positive brain power.

There are a couple more drugs currently coming on the market one of them is avastin - the other is in trial stage but looking optimistic.

Please keep your great strength xxx

When I was diagnosed Her 2 positive in 2006, the only website I could find for this was in the States. All I can say is, don’t go there because it truly frightened the life out of me. I think it was because all the posters on it gave their entire path history - my sister is in the Middle East and gets treated at an American clinic - she told me even if she has a smear test they give her a 4 page path report with the result.

hi sunrise13, please to hear you had good news my nodules were removed and quite a bit of skin but did not need anymore treatment because my onc said that i am cancer free so thats brill news for me.hope you are ok. x

Hi all, just a quick one but i wanted to share my Her2 news with you…

I had first diagnosis feb 10, had op, fec chemo, radio and a year herceptin which ended june 11.

I felt a new lump june 11 which wasnt diagnised until nov 11. I was booked in for mastectomy but had a recurrence on scar line from my 2010 mastectomy whist wating. Op cancelled and i was told i either had a new primary and recurrence or secondary spread to the other breast and skin mets!! Still dont know which one now. Wouldnt operate and hadvto start treatment straight away.

But got on a drugs trial marianne TDM1 which i believe is still recruiting. Just after 3 cycles my recurrence rash and 10 cm lump area have gone and cant be seen on ct scan. I obviously didnt respond to just herceptin but TDN1 is a wonder drug…amazing…

Heres to this drug being licenced and working for many more her2 positive ladies. X

I think I must have had my head in the sand!
I had mastectomy Oct and axillary clearance Nov and will have my 4th tax and 2nd herceptin tomorrow pm. I will see the radiologist am to discuss radiotherapy. It has never occurred to me that I may get more lumps on the scar line - oops !! Thank you for alerting me to this and I hope your treatment goes well.
Do you know how far the margins were from your tumour when it was removed and did you have many lymph node involvement?
Take care xx