Hi
I am so worried and confused. Have had WLE and Sentinal node biopsy already and today went back for my follow up. My tumour was 2.3cm as expected but my surgeon said there is lots of DCIS in the breast and none of the margins are clear. I will now need a mastectomy and reconstruction if I choose to have it at the same time. They have also found out I am HER2 positive which I don’t think is a good thing as I will need herceptin as well as the normal chemo I expected. The good thing was that nodes were clear so I suppose should count my blessings! I am so worried that the extra DCIS found coupled with the HER2 positive result will make my prognosis significantly worse. Does anyone have any advice on this as the surgeon wanted to be up beat and I am not sure I believe her when she says my prognosis is the same as before these new findings.
Hi Vivien
I’m sorry to read you’re feeling worried and confused, may I suggest you give the BCC helpline a call to talk this through. Here you are able to talk share your worries and concerns in confidence with one of our trained members of staff who will offer a ‘listen ear’ as well as support and advice if required. The number to call is free phone 0808 800 6000 and the lines are open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
I hope you find this helpful.
Kind regards
Sam
BCC Facilitator
Hi Vivien.
I think I’m in virtually the same situation as you but somewhat further down the line.
I’m 44 and had widespread high grade DCIS with a grade 3 tumour and 4/14 lymph node involvement. I’ve had mastectomy, reconstruction ( partial - have to wait for rads to finish before implant) and and ER neg PR neg and HER2 borderline. This means that I will probably have herceptin - awaiting further results. I’m currently having TAC chemotherapy.
I’ve had many conversations with my onc and my good friend who is an onc about this. Now, as I see it, although HER2 pos tumours are more aggressive, they do respond very well to herceptin. When you have any cancer, there is a risk of it spreading/mutating and eventually causing problems, which is where prognosis comes in. When they talk about prognosis, they are looking at survival/recurrance stats. As we all know, stats can mean anything.
My onc & my friend have both said
- you have reduced our risk by surgery alone by 50%.
- Statistics dont mean anything. Your statistic is 0% or 100% for cure.
- If it comes back, it will be treated.
Try try try not to worry about prognosis. I take the view that I need to deal with the moment, stay as fit and healthy as I can and rreally really enjoy my life now.
Big love, and thinking of you so much - I’m there too.
Td xxx
I’m with waitingangel on this one.
I had an aggressive tumour which had spread to one lymph node and I was also Her2+. My tumour was found when I went into hospital as a day patient to have a fibroid removed; the tumour was hidden underneath and was not expected by the surgeon as nothing had shown up on any of the tests or biopsies.
When I was passed over to the oncologist, she confirmed the Her2 status, but she said in my case she was not expecting the cancer to return within the 5 year remission period on account of being given Herceptin. I have also been told this by another oncologist on the team (although that’s not to say it would not come back at some point in the future). I had a mammogram in December which was clear and the surgeons were very happy with everything.
I’m 12 months post chemo and 3 months post Herceptin. I both look and feel well and I’m retraining in some aspects of web design and development. I’m also studying for a Copywriting course as we hope to offer this to clients via my OH’s business. That’s not to say everything is ticketty boo - I’m having a few counselling sessions in order to rebuild my confidence and my illness has driven a wedge between me and my sister who lives abroad has been in denial all the way through. Families, eh?
Since last year I have attended my local Maggies Centre and have had great support from them. I really didn’t want to get involved in stuff like that, but I have made new friends from all walks of life, not just BC patients but people with other forms. I went to a makeover session there recently, came out looking and feeling fab and we were given about £200 of lovely products and perfume as a bonus!
Thank you so much for your support and encouragement Cherub and Waitingangel. I am comforted by what you have both said and already feel a little more like I can start to regain the positive attitude I had before the news yesterday. You are both an inspiration to me.
Love V xxx
Hi Vivien,
I am not sure how helpful my story will be to you - but I offer it for encouragement. I was dx 18 years ago before her2 or herceptin were know about. At that time my tumour was 5cm and invasive ductal & lobular!!! I had another tumour in same breast 5 years on, then recurence in skin on mast. site 6mths later, then Lobular in other breast 2 years later. Various other problems but somwhere along the line they found my ca. was her2 positive and suspect all previous ones were. I have had bone mets for 6 years now and have continued on herceptin. I think had herceptin been around a few years earlier I probably wouldnt have had so many more tumours but I am still here despite poor prognosis. It is so good now that those with primary dx are given this drug - I know it doesnt work for everyone but when it does the results are amazing. Good luck with your continuing treatment.
dawnhc
Hello all, it was good to read your comments as it looks like I will be going onto Herceptin after all my chemo/mast/rads. I don’t know what + or - means, all I know is that I’ve been told my cancer is not hormone receptive and that I will probably be on Herceptin.
Dawn your comment really is encouraging, to me and everyone I think and good luck