HER2 POSITIVE-NEED ADVICE

[bgboo]

Oh wineoclock so sorry your partner has left when you have all this to deal with. Hope you have family and friends around you. ((hugs))

[Guest user]

partner has left me 😞

[June_BCC]

Hello joharrison71

Welcome to the forums, this must be a very worrying time for you, I’m sure the users of the site will be along to support you soon.
Whilst waiting for replies maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes
June, moderator

[Guest user]

Hi all,

Im also HER2+, had lumpectomy 5 weeks ago and still awaiting onc app. The anxiety of not knowing is making me feel so tired! I just feel so miserable and tearful all the time 😞
I really need some other females in the same boat to talk to - im feeling so alone even thou my OH seems to of turned into superman lol

[Guest user]

Hello Teri,

Thank you info i find it hard at times to know it had gone this far without knowing until i had signs of bloody discharge

I am sure we will all fight the gremlins together with a lot of support from us all.
Keep Pecker up Pat xx

[Guest user]

Hi
I,m Her2 + I wonder if they have not offered any plan of action until they get the path results from your mx. Herceptin is for Her2+ bc and is only licensed in the Uk for primary bc if given in conjunction with chemo,so depending on your path results you maybe offered both. Remember we are all different and therefore each case may require different treatment plans. Good luck with your op hope all goes well.
T

[Guest user]

Hi pink Buddies,

Have been told today i am HER2 POSITIVE with MX op arranged for
Dec 1st 2011 no node involved bad margin result.

Reading your post on this thread is helping me to keep focused
although feeling miserable at moment,

Have not been told of any plan i suppose i will know more after op.
was told i wont be given CHEMO perhaps because i am post menopause

Keep pecker up Pat xx

[Guest user]

Hi had my mastectomy in December 2010, was told only needed radio therapy after my op. Was not happy with the care at my hospital where I had my op, so went to another hospital.

Only to be told that I have Her2 3+ positive cells although my old hospital said I was Her2 3+ negative, now moving on after 9 months have had 4 EC chemotherapy and am due a year of Herceptin.

I wrote in to complain to my old hospital and they told me that it is a hospitals choice, how can that be, surely all hospitals have a protocol with regards to the oncologist results and treatment should be the same for all.

Is there any one else out there that have not checked the hospitals findings, as 3+ is the fast growing cancerous cells.

Yes totally devastated by this late news now having lost all my hair, your kind words would be appreciated, am I wrong in pursuing this case with my old hospital.

[Guest user]

Jaxette,
I know you emailed me and I answered you but since then you haven't answered me,so I thought I'd find you !
You don't need Tamoxofen because your not hormone receptive,Her2 is NOT a hormone but a protein so that's why you don't need it.
Herceptin blocks the gene from saying I haven't got no her2 give me some BLOODY LIAR!!!
So don't be confused my periods have come back although randomly I am now 44 and it doesn't matter for us HER2+ girls because it's not hormonal.
Please stop stressing I know you are in a bad place but you are also in a good place in that bad place.
I haven't looked yet how big your tumour is I just wanted to find you,but look at me I had 3 tumours in 1 breast and 2 nodes infected my biggest tumour was 11cm by 9cm One of the biggest I have come across,but still the chemotherapy did a fantastic job for me and made the cancer ALL regress back into Pre-cancerous cells.
It's all hard going in this place were in but just get over today !
The hardest part is the chemo honestly the raadiotherapy is a doddle and Herceptin well another doddle like alot of the other girls say I had no side effects from herceptin at all.
I know you have or any day starting your chemo now please let us know how you are doing.
This next year isn't yours but the rest of your life will be xxx

[Guest user]

Jaxette,
I know you emailed me and I answered you but since then you haven't answered me,so I thought I'd find you !
You don't need Tamoxofen because your not hormone receptive,Her2 is NOT a hormone but a protein so that's why you don't need it.
Herceptin blocks the gene from saying I haven't got no her2 give me some BLOODY LIAR!!!
So don't be confused my periods have come back although randomly I am now 44 and it doesn't matter for us HER2+ girls because it's not hormonal.
Please stop stressing I know you are in a bad place but you are also in a good place in that bad place.
I haven't looked yet how big your tumour is I just wanted to find you,but look at me I had 3 tumours in 1 breast and 2 nodes infected my biggest tumour was 11cm by 9cm One of the biggest I have come across,but still the chemotherapy did a fantastic job for me and made the cancer ALL regress back into Pre-cancerous cells.
It's all hard going in this place were in but just get over today !
take care xxxxxxxx

[Guest user]

Hi Jaxette

It is understandable that you will be going through all sorts of thoughts and emotions at this stage. I am sure if we were all honest we had similar thoughts and worries at different stages. The shock of finding out you have BC is huge and you have to be kind to yourself and appreciate that you will take some time to let this news sink in. Try to take comfort from the very positive stories on here and the tremendous support you will find from fellow posters. Please take time to talk to your bcn and your GP or practice nurse to get as much information as you need. Hopefully this will reassure you about your treatment plan and how you will be supported through your treatment. It is amazing how once your treatment starts you often feel a little better as you feel that things are moving forward. Take care. J.

[Guest user]

Hi I am not hormone responsive which makes me wonder what they are going to do-I very anxious and feel very emotional-how didi you or do you cope with this?? Im a grade 3 2cm but its been removed successfully-clear nodes-I just obssess that its in another part of my body somewhere

[Bunny3]

Another HER+++ girl here!!
I have had no side effects from Herceptin at all, I recommend getting a portacath put in, to save your veins!!

Best wishes to all

Donna xx

[Guest user]

Hi

I was diag August 2009, I am an Mx, 6 chemo, 25 rads and 18 herceptin later.

Herceptin in very do-able, I had a some side effects, cold like symptoms after each dose but that was virtually stopped with an anti-histamine given with the herceptin. I did find the herceptin made me tired. I went back to work after the 2nd herceptin, first part-time and then after 4 months gradually increased to full-time.

I finished in March this year, it all seems like a long time ago now. Life is beginning to get back to normal, or as normal as it can be.

Marian

[Guest user]

I know you have had a lot of comments on here and that they will have been very helpful to let you know that are not alone. I too am HER2 positive and hormone positive with a similar size tumour to you with no node involvement. I am now on the final straight! Only 5 more Herceptins to go. I have been back at work full time since June and getting back into my life - I call it my 'new norm'. All the treatment is my insurance policy and I am so thankful that Herceptin is now available in our situations where previously it was kept for those presenting with secondaries. Also, important for you to know that 1 in 5 women are HER2 positive so it is not as rare as we may think at the point of initial diagnosis. Please be kind to yourself through this and let others be kind to you too! Your concerns are very normal so accept that you will have worrying days and down days but you will definitely get there. Take care. J.

[Sam_BCC]

Hi Jaxette

I've given here the link to our Resource Pack which has been specifically designed for those people newly diagnosed. The pack is filled with information to help you better understand your diagnosis, test results and the various treatments available.

http://www.breastcancercare.org.uk/heal ... tionId/82/

Also, do give the helpline a ring if you need any further support or information. They're on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.

I hope you find this helpful.

Best wishes

Sam, BCC Facilitator

[Lost_4_Words]

Hi Jaxette

I'm getting Tamoxifen because my BC is oestrogen receptor positive (ER+) as well as HER2. From my understanding this means that oestrogen might cause the cancer to grow bigger/quicker and increase the risk of recurrence so they give us the drug to reduce the amount of oestrogen. If yours isn't ER+ then Tamoxifen would be of no benefit to you and that is a good thing 🙂

Talk to your BCN and ask her to arrange for someone to go through your path report step by step. And tell her about your fears, they are quite natural. Last time I saw my Consultant was 10 days post-op, he checked my scar, discussed my next step (chemo) and said 'see you in a year' it really threw me!! I was like 'oh my god' but I met my oncologist last week and the first thing he asked me was did I understand my path report and did I have any questions. I found it best to make a list of questions to ask at my next appointment because each time I walked in they would tell me something new and all my questions from my previous appointment went out of my head!!

Remember all your post-op treatment is preventative treatment not curative 🙂 and they will do everything they can to stop it recurring because you are so young (I liked it when my consultant told me that), I'm the same age as you but pre-menopausal although my periods are getting really 'hit and miss' if Tamoxifen stops them all together after 2yrs they will change me to something different. If you hadn't had a period for a long time it might be worth mentioning this one but because you're not ER+ you don't need Tamoxifen. One thing that has helped me is knowing that my treatment is tailored to my dx and I'm not just getting the same as everyone else, I'm getting what will benefit me in the long term and so are you 🙂

I start chemo on 27th so today I'm off shopping for my 'bits and bobs', pineapple chunks, I haven't had them in years! 🙂

Keep smiling, we will get through this 🙂
L4W

[Guest user]

Hi Hatty-thanks for your reply-Im so glad to have this website and forum as its great to get feedback from others in the same position as me-Im so worried about it turning up again-do you mind if I ask your age? Im 46-my tumour was 2cm grade 3 but they removed it with negative nodes adn a clear margin-Does this make any difference??

[Guest user]

im her2 only 5 more herceptin to go and treatment finished im in remission so its very do able. good luck.

[Guest user]

Thank you so much for the reply-I am starting to see that there may be hope-however I did not see my pathology repot and have been told that I am not hormone responsive so I dont think I can take tamoxifen-thats why im worried-herceptin seems to be a good drug but I m just worried incase thats all they will give me. Do you know they told me I was post -menopausla-im 46-and yesterday i seem to have taken a period so what does that mean??Im really confused-thanks for posting me-please stay in touch-this forum really helps

[sallieannie]

Hi Jaxette

Great news about the lack of lymph involvement! Like many others have posted, I had 8 chemos, surgery, rads and 18 herceptin. Finished herceptin in Aug, now just on tamoxifen for 4 more years. It is horrible and terrifying when you get diagnosed, but there are so many ladies on this forum proving it is doable, and there is light at the end of the tunnel - hence my pic!!

One thing you may wish to ask your hospital about is having some sort of port or line inserted. There are mixed blessings, they need taking care of and can look a bit distressing, but they save your veins and you don't have to get injected all the time for your treatments, blood tests etc. I ended up having a hickman line put in about half way through my treatment as my veins gave up. I'll be honest I didn't like it - but it was a relief to not have injections any more, and since I ended up having it done anyway I kinda wished I'd just had it from the start. Something to think about anyway (I'm sure you have already got enough to think about!!)

Good news is, as others have said, chemo is not nice but it is do-able. Make sure you are vocal about any side effects you have, there is so much they can help you with, but sometimes you do need to ask! And even better news, once chemo is over (it DOES end, I promise, even if it won't feel like it at the time!) having herceptin on its own is a breeze. And rads are pain free too.

Do keep posting, the support on here is phenomenal and we have a rule that there is no such thing as a silly question. Good luck and very best wishes xxxxx

[RoadRunner]

Just to add my bit in - also grade three herceptin +ve lady, with lymph involvement. Diagnosed 4 1/2 years ago, had mx, 8 cycles chemo, 4 weeks rads, 18 herceptin and am 4 years into 5 years of tamoxifen. Fit & well.

[Lost_4_Words]

Hi Jaxette

I'm in the same position as you, just had MX and waiting to start chemo (6) with Herceptin (18) followed by rads (3/4 weeks) and Tamoxifen (5 Years). My Oncologist told me 'I'm cancer free' and that all these treatments are to *prevent* recurrence/ secondary spread. Under the circumstances I feel quite lucky, I'm getting everything they've got to make sure that in 20 years time I'm hear to tell the tale of this terrible nightmare. I found out the other day that Herceptin will be given with my 4th chemo and continue once every 3 weeks (18 sessions) but the good news is there doesn't seem to be many side effects with it (anyone, please feel free to correct me if I'm wrong) and once I've finished rads I should be able to return to work.

Thanks to all the other ladies who've posted that are years down the line, it is reassuring to know that life will become ordinary again 🙂

I am, I can, I will 🙂
((((((hugs))))))
L4W

[Guest user]

Thnak you all for the wonderful uplifting replies-I feel so much better and am getting stronger in terms of fighting this thing!I am concerned about when the Herceptin finishes-will I be put on another drug?? I hope so cos I am such a worrier and I know I woukld feel better knowing I was taking other meds even as a sfety net.

[Guest user]

Hiya jaxette I too am her 2 pos I had node involvement. I am having fec number 5 next week followed with radio then herceptin and tamoxifen. One thing at a time is best advice it is bloody scary but look above there is lady's who have came through this horrid experience and still here to tell the tale. Keep ya chin up and your family and friends close. we will fight this as life is worth fighting for. Xxx

[Anthi]

Hello Jaxette

My diagnosis was similar to yours except that I had some positive nodes as well. I was diagnosed nearly 5 years ago and had WLE, ANC, chemo, radiotherapy and a year of Herceptin. I'm still taking Aromasin.

As others have said, the chemo isn't nice but is 'doable' and the Herceptin is very easy as there are almost no side effects from Herceptin.

There are many others on this site who have been through the same treatment. Try not to worry. It all seems very frightening at first but just take one stage at a time and you will get through.

With best wishes - Anthi x

[Guest user]

Hi jaxette,
I'm Her2+++ too, with clear nodes. Had mastectomy for extensive dcis in june and was then found to have areas of hormone negative microinvasion. I'm about to have my 5th chemo tomorrow and 2nd herceptin. 6 lots of chemo sounds alot when it's first mentioned, but it seems to have passed fairly quickly. I remember how sad and scared I was when I was 1st told I'd need chemo, but it is reassuring to see posts from many others, who were diagnosed years before us. Sending you a hug.
xxx

[Guest user]

Hello,

With no lymph node involvement your prognosis will be good. I am HER2+++ but had lymph node involvement and I'm planning on beating this! It's really overwhelming and scary at the start.

With herceptin my oncologist says that it cancels out the added aggression of HER2+++ tumours bringing your prognosis back to that of someone who is not HER2+++. but the NHS predict tool actually reports that it improves survival. It's tricky as it hasn't been a standard drug for long - but one thing's for sure is that it has saved lots of lives.

Chemo is completely doable (in fact I had very few side effects) and have had no side effects from Herceptin at all.

X

[Ruby1]

Hi Jaxettee
So sorry to hear about your diagnosis. It's so much to take in and take on board. I was HER2+ with lymph node involvement, grade 3, widespread DCIS - here I am 4 years down the line, having had 6 lots of chemo, 3 weeks of radiotherapy, a mastectomy with lymph node removal and a year of herceptin and I'm doing fine. I thought that hearing from somebody with a similar diagnosis to you would help you a little. I also knew I'd be doing chemo right from the start so it didn't come as a shock to me. Being HER2+ they throw everything at you - my oncologist told me he was over treating me just to be extra safe. There are lots of women who are HER2+ and I'm sure you'll get some more responses soon. Chemo is very doable - it's not nice but you'll be well looked after and all the side effects can be dealt with through the use of drugs so that you don't feel too bad Hope this has helped a little.
Hugs
Ruby xx

[Feemac]

Hi Jaxette,
I have had the same diagnosis as you. I was diagnosed 2 1/2 years ago. I have had 6 chemo's, 4 weeks of radiotherapy and herceptin too. There are a lot of ladies like us on here too. I'm am healthy and life is returning to normal. I know it's such a shock to begin with but you need this treatment. My life has changed forever now but it isn't all bad. Try to take each step as it comes and deal with it one step at a time. You will get through this. This site was a wonderful place for support and advice.

Best wishes
Fee xx

[Guest user]

Hi everyone-I just got my op results yesterday and I've gone from being elated as there is no lymph node involvement and the tumour was removed with clear margins.Then I was told it was a grade 3 which I coud handle-however I was told my tratment plan will involve 6 rounds of chemo, 4-5 weeks of radiotherapy and one year of Herceptin. I am really depressed over this as a prognosis-is there ANYONE out there who knows of or who has been through something similar?? I am unable to think of anything else-Im crying all the time -just need to know are there any surviviorsor anyone in the same position as myself??