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
-x-
reply I am so sorry that you did not get the result you hoped for and are feeling so scared.
Your emotions must be in turmoil today.
You have been so supportive in your posts to other people that I am sure you will get lots of support back.
Please know that I am thinking of you.
Love
Thistle
Dear Kelly,
I know it must be difficult to stay positive , but all the press coverage about Herceptin has been extremely upbeat ; try to focus on the fact that you are going to be given something which is intended to keep you well and that you will reach the finishing line.
Hope this helps a little . I live in Shifnal by the way.
Janeyb
x
Thank you Hi Thistle & janeyb,
thank you so much for your support and kind words, I am very grateful. I’ve had time to get my head round things a little more now and am realising that being HER2 + is not the death sentence I imagined it was.
I have booked myself some counselling through my local support centre as I think I’m starting to struggle a bit mentally. Its often easier to talk to someone who doesn’t know you and isn’t emotionally involved.
Thanks again ladies,
Take care,
Kelly
-x-
Dear Kelly
You are so great at supporting others and now I feel I must offer you some reassurance from the information that I have been given. I have to have Herceptin as well but I have been told by several doctors (surgeon, oncologist and occupational health) that this isn’t a bad thing as it means there is something else they can hit it with. I don’t think there is a lot in this part of the forum about Herceptin as it has only recently (last Summer) been licensed for primary BC, but if you search in the secondary BC section there are some very positive posts. I have been told it is not at all the same as having chemo and I expect to be able to work through it. In this area, apart from the first 2 which have to be done in hospital just in case of side effects, it is done by Healthcare at Home in your own home or even place of work so maybe needs half a day off every 3 weeks. It may be the same for you.
You CAN do this and it WILL help you not to have a recurrence. I am much older than you but I am determined to see my daughters get married and one day perhaps I will have grandchildren. There are still lots of things I want to do and places to visit and I will not let this cancer stop me.
Writing this has helped me get over being the weepy person I was earlier today as I am feeling very weary and achy from chemo, so hopefully it is a dual purpose message.
I’m sending you positive thoughts and hope you get them…
All the very best
Anne
Hi Kelly You have been very supportive of others and now you need time to think of you. You will get your head round this, you will get through this. I am thinking of you at this stressful time and hopefully sending you some positive vibes.
Margaret x
counselling Hi Kelly
I think you are right to have booked some counselling. Speaking to someone who is not emotionally involved and does not know you personally can be easier and a great help.
A work colleague of mine whose wife (whom I have never met) and has been through breast cancer, phoned me quite a few times during my treatment. She was a great listener and had I could ask her questions without getting all tearful and upset. I found it a really helpful because she was outside my emotional circle.
I hope it goes well and helps you.
Love and take care
Thistle
Hi Kelly
My dx is very similar to yours grade 3,hormone receptive and HER2 receptive. When receiving the results from my onc and been told the treatment I would have chemo,rads,tamoxifen and herceptin my thoughts were very negative and I didnt ask any qustions as like you I didnt want to hear it, I just said right lets get started then.
When arriving home and speaking to my husband he had interpreted our meeting with the onc completely differently, he felt i was just been given extra insurance to prevent bc coming back and that this was just a mopping up exercise.
I have had my first chemo two weeks ago and feel I have a long way to go but I know it has to be done and I have to be positive.
Its so easy to feel down and any negative feelings i have my husband always has a positive answer. I have followed many of your posts and the are so helpful and positive.
take care Kelly
Rachel
Hello Kelly
I’m HER2 Positive also and was really terrified when I got my HER2 results.
But since then I’ve been told that because Herceptin is now available we HER2 positive people have an equally good chance as people who are HER negative.
Having the treatment is no problem either. After the first two - which take longer because they need to monitor you for a few hours in case you react badly to the infusion - it’s only a 90 minute infusion and there are very few side effects.
Try not to worry - take care
love Anthi
Advice Hello all
I was hoping someone could help me with some information I need. I am 46 years old was diagnosed with Grade II invasive Ductal Carcinoma 5.5 weeks ago and had my first session of FEC chemotherapy last Friday. I have been feeling relatively well since the chemo, with the exception of a bit of tiredness and slight nausea 2 days afterwards. I have had stomach cramps for the past 2 days, just on and off. Has anyone else experienced this? I’m thinking that it may be because I stopped taking my anti emetics as directed on Sunday.
Also I have been told that i am HER2 negative and that this is a very good thing. Why is this?
also I have been experiencing tenderness of the breasts and phantom period pains. I have been told that the treatement will bring on menopause at my age. What is everybody’s experience of that? Also what is everybody’s experience of hair loss?
I would appreciate your advice.
Cecelia.x
Kelly,
I’m so sorry to hear your news but more sorry to hear that you were so down with it - I’m sending you a huge hug. I’m so glad your 2nd post on this was back to your positive self. You have been so positive throughout and you know you’ll get through this one.
How did it take so long to get the result - I had my result Her 2 neg within a month? I was highly worried that they gave a negative result using the not so accurate test due to the cost of herceptin and when I last spoke to the onc I did air my views- he showed me my result - i scored 1 which is negative but do feel a little frightened that I’m not having herceptin - I just want everything that they have thrown at it to get rid of it once and for all.
All the posts I have read say that Herceptin is nothing like the normal chemo
keep your chin up and when you feel down (like we all do from time to time) use the threads to air your thoughts
Me too ! Hi Kelly
I know how you feel my sweet, I’m HER2 positive too ! When I was told, I took the news the same as you and it really knocked me for six especially when I found out it meant my tumour was agressive ! I’ve got five more chemo sessions to go through, then a mastectomy, rads, then Herceptin. I’ve yet to see the light at the end of the tunnel !
Mind you, after the initial shock set in, I have mananged to focus on the positives for having herceptin. Plus the fact I’ve been promised there are no side effects which has to be a bonus.
I have to echo what others have said Kelly, you’ve been so supportive to people on here - especially me when I was having a really bad time of it a few weeks ago. Hope you’re feeling more positive now, and remember girl, we WON’T let this beat us !!
Thinking of you, and sending you huge hugs
Julie xxx
Hi Kelly,
I like you recently found out I am HER2+ too! I was totally gutted to think I had another year of visits to and from the hospital! (I actually thought Herceptin was just a tablet we could take every day!!!) I just hoped that I could ‘get back to normal’ as soon as possible.
After lots of thinking - it can only be a good thing and anything we can get to destroy this horrid disease is a bonus!!
Keep your chin up Kelly,
Janette X
Brilliant!!! Ladies,
as ever you have been totally brilliant!!! I can not thank you enough for replying to my post.
Anne - Sorry to hear you were feeling weepy yesterday but I know eactly how you feel. I really hope you are not feeling so achy or weary today. I defo received the positive thoughts you sent and I say 'right back at ‘cha!’
Margaret - The positive vibes are coming through loud and clear and are very much appreciated. Ditto!
Thistle - Thanks for the support re: counselling. I now know its the right thing to do as I don’t want to bottle things up and then explode!
Rachie - I’ve read your profile, I know there’s no ‘good’ time to find out you have bc but hearing it so close to your nuptials is a*se!! I spoke to my research nurse today and she basically said Herceptin is my ins policy so I’m not so scared now. Are you on E-CMF? How are you feeling??
Anthi - You must be psychic! My research nurse said exactly the same thing today about herceptin giving me an equally good chance as someone who is HER2-.
Kelyn - my little guinea pig…thanks for the hug and ditto! Everyone at my hosp has had to wait ages for their HER2 result. They’re v.v.quick on everything but that!
Julie - It’s reassuring to know that I’m not the only one who was feaked out by a HER2+ result. I wish you well with your remaining chemo and the mastectomy. We WILL see that light at the end of the tunnel, there’s just a little corner first!
Janette - Like you I also imagined Herceptin would be a tablet and was quite dissapointed to find out it wasn’t!
Take care ladies, and thanks as ever for all your support and good wishes,
Love and hugs to all,
Kelly
-x-
Hi Janeyb,
do you go to the Pink Ribbons support group at all at PRH?
Kelly
-x-
Hi Kelly
I had a similar dx in Jan 07, I am 39 years old with a 17 year old daughter & 3 year old daughter. Was told would need chemo, operation, rads. I started my chemo (15th Feb) and have just had my 7th one today and have been told my tumour has shrunk approx 3cm since my last visit 3 weeks ago. I had my first herceptin 14th May which was a bid of a drag as i got a temperature so was only allowed out of hosiptal later in the evening, but after my 2nd, I was told I could continue through healthcare at home, who came out on Monday - and i must say they were brilliant.
I can only say that my chemo treatment has helped shrink my tumour - I have had 4 x EC and 3 out of 4 taxotere (even this hasnt been as bad as I thought it would be).
Stay strong and positive, it is hard at times I am not denying it. The herceptin is there to help like others have said and we are lucky that it is available now. I will be on herceptin until June next year but remain positive by thinking my chemo has provided positive results so far so with the mastectomy and the herceptin I am determined to beat it.
Love
Mandy
hiya
I got the same diagnosis as you, yet havent had my HER results back yet. I had my mastectomy in december, and then started the e-cmf in january…just one more cycle of cmf to have. Still to have the 5 weeks radio, and 5 years tamoxifen. My onc is great, stern nd no nonsense like. He said after my op etc, this is whats going to happen, purely to mop anything left over up, but after all my scans etc there is nothing else lurking, but i will have everything chucked at me to get it sorted. The way I saw it was…pump me full of crap, zap me with whatever…feed me pills til i rattle…and ill see you in 10 years…well i hope not anyway. My onc says that he doubts i will come back her2pos…however, my arguement is…well everything sodding else came back positive so odds on etc. Just means that my needle count goes sky high again…just as i got it down to single figures…hate needles but needs must. Chin up chica
Just to say to all you ladies,
Your brilliant!!! You are allowed to feel scared at times as we all do, but you are also so positive and keep hold of that. Hugs to you all and good luck with treatments.
Love Mrs T xxxx
Ladies,
thank you as ever for your unfounding support.
You’re awesome!!!
Kelly
-x-