I’ve read some really disturbing things recently about being HER2+ and its prognosis and wondered if anybody is able to reassure me by telling me anything at all positive. Do you know anybody who has made a recovery from this type of BC and remained clear for any length of time? I’m really scared and depressed now as a result and need to hear something that will help me feel more positive. All I seem to hear is it’s aggressive and the prognosis is not good and the reoccurence rate is high.
My tumour too was HER2+ and as far as I am aware it is nothing to worry about. I had chemo starting April which finished in July. My tumour which was 20mm, grade 3, disappeared!! I had a WLE in August to remove damaged tissue and 9 nodes removed (3 of which were affected). I am now halfway through radiotherapy (which is a doddle!!) and looking forward to returning to normal. (Whatever normal is!!) I will be starting on Herceptin after rads and having this for a year.
I am very postitive and have complete faith and trust in my oncologist and breast care nurse who have been straight with me right from the beginning.
I intend to continue fully with my life but do things slightly differently… spend more time enjoying life rather than worrying about whether I need to dust the window sill!!
You will find there are many ladies on this site who can give you lots of support who are HER2+, please don’t listen to all the ‘bad stuff’.
Stay positive and remember we can beat this damn disease!!
i’m sorry to hear you are scared. I 'm wondering if you’ve read some of my latest postings which would have scared you - i’m sorry if I have contributed to your worries.
I don’t think anybody can give you the reasurance you and everybody else wants whatever type of bc you have as bc is so unpredictable. You get people with grade 2 so a less aggressive type suddenly developing aggressive secondaries and this happens with any type of bc - hormonal, her2+++ etc and others who had a poor prognosis doing really well and having no recurrence.
My onc said at least being Her2+++, there is now herceptin. Remember, this has only really been available to all primary Her2++ women for just over a year and many women never received it as they were over the time limit of starting it within 6 months of finishing chemo and still doing well. Many of of us stay on herceptin for longer if they feel we are at higher risk of developing secondaries due to high lymph involvement.
There is also the coming of tykerb/lapatinab and lots of research going into this particular form of bc.
I think the way I cope is the old cliche stuff - making the most of today, taking pleasure in little things etc.
Not being able to read profiles is a bit of a pain as I have no idea how long ago you were diagnosed or what treatment you’ve had or undergoing so finding it difficult to give you the reassurance you want.
Hope all goes well and I hope someone can give you more info but as I said it is such an unpredictable disease and you never know which side of the stats you will fall in so all you can do is to try to make sure you do things you’ve always wanted to do and make the most of your life - we should all do that automatically but of course, it often takes a major illness to make you view life diffferently!!
Best wishes
Kate
Janette when I first read your reply I just felt so grateful for the response and your comments it made me feel quite emotional and you certainly made me feel a bit better. It is easy to be brought down when you are dealing with something like this no matter how positive a person you are. My oncologist had referred to my treatment as “curative treatment” but reading these threads apparently nobody is “cured” they just show no evidence of disease - so a bit confused about his comment.
Kate thanks for what you’ve said - I just needed to literally see or be told something which could make me feel more positive again. I’ll just tell you a little about me. I was diagnosed in June with grade 3 and HER2+++ invasive breast cancer in my left breast and in my left armpit (lymph nodes) had all the scans etc which were thankfully clear and began chemo in July - 3 x FEC and 3 x Taxotere. Next week am having 5th lot of Taxotere together with herceptin which I started with my first lot of taxotere. Having a mastectomy in December which I am dreading and then 3 weeks of radiotherapy. Then herceptin for a year. I know this disease is unpredictable and that is what is so scary about it - sometimes I just can’t believe what has happened to me and I can’t believe how many other people there are out there in the same situation as us.
I feel so grateful to the wonderful women out there who campaigned for us to get herceptin. It is also good to hear that there are other drugs out there if we need them.
Not sure how helpful you will find my story - and again it is such a shame we dont have profiles yet!!! I was dx 17 years ago with a large invasive (6cm) tumour and in those days there was no talk of her2 or herceptin, but since then i have had other new primary tumours (thats the scary bit) and they were all found to he her2+++ so it is assumed the original one was as well. My primaries all happened well before herceptin was considered for primary bc. But I have for 5 yrs had extensive bone mets so have been on herceptin since beginning of 2004. I do keep very well - I know we are all different but hope you find this in some way a positive story.
I was diagnosed with really high risk her2+ breast cancer and have made it four years out without recurrence, although I was so high risk I managed to get late herceptin (much of it at my own expense). I saw the bit about 30% of women not making it to four years, but that was before herceptin. I don’t think such odds are helpful to cancer patients. There are lots of her2+ patients who live for a long time after diagnosis, but they tend to move on. I will have to as well, since I am finding that getting my life back the way I want it takes alot of energy (well, that and the four year old).
Some women are cured, but there is no way of knowing at the end of treatment which camp you are in at the end of treatment. I have read one study suggesting that er-,pr- cancers hardly ever recur after more than 8 years, whereas hormonal cancers can come back much, much later.
Thank you both so much for your responses they have helped. I think I had been doing too much internet surfing and have read some things on this site which scared me - dangerous thing to do and got myself in a bit of a state about being HER+++. Hearing your stories does make me feel a little better - that was what I needed to make me feel a little more positive again. I’m gonna pull myself together and get out of the house and try as much as possible to enjoy the weekend with my friends. I just feel like I’m living in some kind of bubble at the moment i.e. living a completely different life to my friends and to the life I had before - nothing seems normal anymore. As this all began in June for me I guess I haven’t got to the stage where I can just live with it and get on with my life - it’s always in the background now whatever I am doing.
Anyway Dawn - wow 17 years that is really amazing and as you are HER2++ like me is good to hear how well you are doing coz I had begun to think that I would just pop off very quickly if it came back - keep hearing stories about people being diagnosed and passing on very swiftly - dunno if it was coz had already spread or did not respond to treatment etc etc - it’s the not knowing.
Christine - is so good to hear you have been free for 4 years - and you are right you just don’t know which camp you are going to be in. I’ll just have to try and be positive and get on with my life as much as possible.