Stage 1, HER2 positive, chances of recurrence after Herceptin?

Rubyluby · 07-28-2010, 07:16 AM

Hello ladies,

I'm halfway through my year of Herceptin - due to finish in Feb 2011. I was diagnosed in Jan 2009 with a 1.1 cm tumour, nodes clear, grade 3, ER/PR neg. After my lumpectomy I had 6 rounds of FEC chemo, then radiation and then went on the ALTTO trial where I received Tykerb (Lapatinib) on its own for 3 months. I dropped out as I wasn't happy about being on the trial arm where Herceptin was excluded altogether and went onto the standard Herceptin treatment. But it does mean I've had two different anti-HER2 drugs.

My onc says the first two years after diagnosis and surgery are the critical ones in terms of recurrence and I am 6 months away from my second cancerversary.

I'm confused as to what the risk of recurrence - local or distant - actually is for someone like me.

Does anyone know? I'd be grateful for any info anyone else can offer.

Hugs and healing to you all...

Lucy

tricia keegan · 07-29-2010, 10:43 AM

Hi Lucy, as most of us that took herceptin for early stage bc are just passing five years I think it's probably too soon to know any definate numbers on this.
If you re post your question on the her2 forum someone may know more, and you'll also see many of us have reached five years which may give you hope

Jackie07 · 07-29-2010, 08:30 PM

Lucy,

There are a couple of 'long-term survivor'/'long-time survivors' threads you can access by typing the key words using the 'Search' button on top of the Board.

With the many treament you've had, I'll say the chance for you to have 'recurrence' is quite low. My recurrence wasn't detected until four years after the initial diagnosis because everyone thought the 'shadow' on the mammogram was 'scar tissue'. (Wished someone had told me about the 'shadow' - but all I'd been told was that 'everything looked good'...)

Keep in mind that I did not receive the standard full-year of Herceptin (Altogether just 22 weeks of treatment.)

There were signs of the recurrence (weight loss, skin problems, fatigue...) I think if you listen to your body (rationally), keep all your appointments, and maintain good communication with your health care providers, there's nothing you need to fear.

Even though my recurrence wasn't found for 4 long years, mine was considered a local/regional recurrence and was treated as if it had been diagnosed the first time. So now I'm counted (at least by myself) as a 7-year survivor...

Rubyluby · 07-30-2010, 09:50 AM

Bless you, Tricia and Jackie! Thank you for responding and for giving me hope. I'll search on some of the long-term survivor threads too.

Lucy

Becky · 07-31-2010, 02:16 PM

I am almost at 6 yrs and I took Herceptin alone (after chemo was done), I guess much like you and my disease was more advanced than yours.

Keep smilin'. There is a pot of gold at the end of the rainbow. I'll tell you what I tell everyone, to be a 30 year breast cancer survivor, you first have to be a 1 year survivor then a 2 year survivor.... Unfortunately no shortcuts and you shouldn't want any because you'd miss all those fine years of living!

Sandra in GA · 08-26-2010, 01:05 PM

Lucy,
It is wonderful to reach that two year mark and be NED as I have just done. However, it does not take away all your worries. I just had a fatty tumor removed from my foot because the doctor could not aspirate it and then he said it looked "solid" from the sonogram. In the past, I would have never jumped to the conclusion that there could be something really bad~but now.....
Your tumor status and lymph node involvement were both better than mine. But, I am healthy and free of disease at this time. I was in a phase II study and received both Tykerb and Herceptin for a year. I am so grateful for this and believe that is why I am doing so well.
You will do well also. I am sending best wishes to you for a long and healthy life.
Sandra

Joanna J · 10-02-2010, 02:54 PM

I was diagnosed in Feb 2009 I was her2+ no nodes I took ayear of Herceptin ,but also had carboplatin & taxotere & 37 rounds of radiation,right now I am free of cancer, (catscan as of july 2010) I too am scared,Her2 is an agressive type of cancer,But always remember;we have God I pray to him daily,no one said it will be easy but w/o him it is lonely,Take Care & god Bless you. Joanna J

donalddonald · 10-07-2010, 06:21 AM

not want to scare you, but my wife had recurrence after one year of herceptin.
your question:
I'm confused as to what the risk of recurrence - local or distant - actually is for someone like me.
my wife had a recurrence at her lung and then later brain. now having Tykerb about two year.
just for your reference.
best wishes to you!

Joanna J · 10-07-2010, 07:31 AM

donald,So sorry to hear this abt your wife,especially w/stage I,did she chose a mastectomy or partial mast??? I understand that things like this can happen,we just never know do we?