HER2+ and scared!!!

HER2+ and scared!!!

HER2+ and scared!!! Hi all,

as if this wasn’t awful enough I have just received the news I was dreading, that I’m HER2 positive.

This has come as a real blow and I am gutted! I was first diagnosed in March, aged 34. I had a right mastectomy and the tumour was grade 3 hormone receptive. I started E-CMF chemo last month, after which I’m having rads and hormones.

The one thing that I was clinging on to, the one glimmer of hope I had, was that I may be HER2 negative but sadly I’m not that lucky!! It’s just one thing after another and It’s really starting to take its toll.

I had been looking forward to the end of this year, when I should’ve completed all the nasty stuff and now I find I will need to have Herceptin infusions every 3 weeks for a year! Its just feels as though there is no end to this in sight, like the finishing line keeps moving.

I’m scared to be honest. I know that Herceptin is a bit of a ‘wonder drug’ and I should be grateful it is available but I’m worried as I know I must have a v.aggressive tumour to need it. I’ve never given my prognosis much thought until today but now it is worrying me. I’m scared of speaking to my oncologist as he may well tell me something I don’t want to hear. I really am at my wits end,

Thanks for listening,

Kelly
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HI Princess

Sorry to hear that you are so upset about being Her 2 +. Although I know you are worried about the prognosis, remember that you are having curative, adjuvant treatment and Herceptin is part of that regimen.

thinking of you,
Fuschia
xxxxx

I had Herceptin as well… Hi there

I had to reply as soon as I read your post. I was diagnosed with BC two years ago (at the age of 30) and have only just completed my course of Herceptin.

My diagnosis came at a time when Herceptin was only just being talked about, so I didn’t really have clue what HER2 meant and was spared some of the fear that you’re experiencing right now. You are right in saying that it means that you (and I) have a more agressive tumour, but then again we also have access to an excellent drug which has displayed astonishing results in fighting BC.

I know that a HER2 diagnosis means that a longer period of treatment, but unlike chemotherapy Herceptin has no side effects (apart from causing possible damage to the heart). It is a bit miserable having to spend more time in the chemotherapy day treatment ward, but at the same time there is an awful lot of comfort to be had from being reguarly checked by a doctor. I think I might have fund it quite hard to have stopped going to hospital after a year of treatment because I was still feeling quite vulnerable at that time.

I never asked my Onc for a prognossi because, to be honest I really didn’t want one. However, like you I was also hormone receptor (ER+) positive and my Onc told me I was very fortunate that so many different drugs could be used on me (only about 10% of all cases are hormone and HER2 positive) so that will also increase your chances of disease free survival.

If you are getting really worried about all this then I would highly recommend talking to a neutral person. Sometimes it is very difficult to voice your fears to those who are close to you, but there should be access to a Macmillan counsellor through your hospital.

Hope this helps and good luck with it all!

Nicola

Thank you Hi Fuschia,

thank you so much for your kind words and support. I am very grateful,

Take care,

Kelly
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Thanks Nicola! Hi Nicola,

thank you so much for getting in touch and telling me your story (for want of a better word!). You have helped me more than I can say! I spoke to my research nurse when I went for my chemo today and she really echoed what you have said in your reply. She said that having herceptin is like my insurance policy. Although being HER2+ does mean my tumour is more aggressive she said the herceptin counteracts this and it means my prognosis will be as good as someone who is negative. it really doesn’t sound so bad at all and I now realise that maybe i was being a bit of a drama queen (not for the first time!!).

Hearing form yourself, who has a diagnosis v.similar to mine is a great help, particularly as you have now finished your herceptin. (I hope you celebrated by the way, I know I will!!). Did you have any heart probs during the herceptin at all? I know this is one of the side effects and that they echo and/or muga at regular intervals to check your heart as it can affect it.

Yesterday I rang my local support centre and they have arranged for me to see a counsellor. I am finding the mental side of this illness very hard to deal with at times and thought it would be good to seek some help. My boyfriend, friends and family are awesome but you’re absolutely right, sometimes its better to speak to someone who is not emotionally involved,

Thanks again for all your help, advice and support,

Take care and I wish you well for the future,

Kelly
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That’s no problem at all - I’m delighted to be able to help you. It’s great to have some positive things coming out of such a negative experience.

Considering all that you have gone through recently I don’t think that you’re being a ‘drama queen’. Infact you are entitled to kick up as much fuss as you want.

My Onc also told me that having Chemotherapy, Herceptin and Tamoxifen basically reduce my risk to that of someone with a much smaller tumour and no lymph node invovlement. I know that in itself does not gurantee my future, but it certainly made me feel better.

I had heart scan at the beginning of Herceptin and then every 12 weeks for the rest of the year. My results were pretty much consistent throughout the treatment and my Onc said that he would only expect them to change if I were a smoker or already had a heart problem (neither of which applied to me). I did freak out one time when my heart function appeared to drop by a couple of percent (sometimes it doesn’t take much to set me off) but the hospital staff explained that there is a a degree of error of something like 5%, so there was no cause for concern.

I was planning to have a celebration when I finished Herceptin but then decided I was loading too much significance onto that date, so about 3 months beforehand I started doing loads of things I’d planned to do before this all started. These included a couple of holidays, horse riding lessons and some very expensive nights out. Hopefully I’ll continue like this for a good while yet.

I’m really glad to see you have contacted a counsellor. I probably had about 20 sessions which began just as I started Herceptin. I have to say that I found them much more helpful than I expected and in the long run will probably be of use in other areas of my life as well.

Anyway, I’ve noticed that Breast Cancer Care have set up a private messaging facility on their website, so feel free to contact me through that any time you want.

Nicola X