HER2+

Hey Silver

Just to say one of these lovely ladies will be able to help you soon.

I am on a different path to you but I just wanted to say you are not alone, it totally sucks, but you can get through this.

Waiting is the worst bit, doing is easier.

Sending you gentle hugs and Love x

One day at a time.

Hi Silver. The first piece of advice is to stop googling everything and only go on the Macmillan, Canceruk and NHS sites which will give you all the correct advice. Also the Breast cancer nurses will be able to give you lots of advice. In my hospital in Kent they have a Macmillan information centre with all the leaflets and the person manning this booth is so knowledgeable that they would be able to help you.

i am also HER2 + which means I will need Herceptin when I have finished my chemo. This means that it will bring on a menopause and as I am 72 I finished with all that 20 years ago I am dreading it. I assume you will also be going onto Herceptin........ Happy Days

Good luck with your treatment

Rosie x

Thanks Rosie,

and you are completely right I must stop googling everything. Yes I will be on Herceptin after treatment and I’ve not gone through the menopause yet so I’ll have that to look forward to too - to be honest though - I’m just thinking it’s something I will just have to do. I’ll certainly be a stronger person after all this I’m sure. Good luck with the remainder of your treatment too. Hopefully mines will start soon xxx

Thanks for your kind words Maz xx

Hi Silver,

I'm in Edinburgh and had a similar HER2+/ER+ diagnosis.  I was 50 when diagnosed and pre-menopausal.  From getting the biopsy results, I was in the chemo chair in 2 weeks.  They are pretty fast.  We knew it had spread to my lymph nodes as I could feel the lump in my armpit from a node but my breast tumour was tiny and non-palpable so that wee lymph node was a saviour.  The chemo (Dec-Apr) did a great job on the cancer in both my breast and lymph nodes and I had what is called a 'pathological complete response', which means it got rid of the cancer entirely.  They can't tell this until they test your tissue post-surgery, although  you will get scans during chemo which will show how your tumour is responding.  I had a lumpectomy and full node clearance (May), then a month of radiotherapy (Jun/Jul), and just finished my Herceptin in Feb this year.  It seems like a long haul at the start but just take it one step at a time - eg one chemo at a time - and you will get there.  Use your Breast Care Nurses (BCNs) for any questions or worries you have.  That's what they are there for.  Also check out your local MacMillan and Maggies, if you have one.  Both have great resources, staff and courses, or you can just pop in for a cup of tea.  Maggies has a kitchen-table which encourages the service users to talk to each other, or you can just have a quiet sit on your own.  Good if you have a bit of time to kill before or after hospital appointments. (Maggies in Edinburgh is right at the Western.  Looks like it's at Gartnavel in Glasgow.  Is that where you are getting treated?

I agree with others not to google.  You'll either worry yourself sick or get loads of contradictory advice.  Oncologists are not good at giving advice on diet, probably as nothing has been proven to be optimal but I do think there are some sensible guidelines to follow.  Cutting out alcohol, if you can, and cutting down on sugar.  However, you do have to have some pleasure in your food and you will find on chemo that you might feel a bit nauseous and your taste buds might be affected.  In these cases, you are just advised to eat what you fancy to ensure you are getting some nutrition.  I did overhaul my diet after my treatment had finished, mainly because my gut was pretty badly affected with the docetaxel and antibiotics I'd needed for infection.  My main mantra is to eat loads and loads of fibre, which is good for your gut and makes you eat lots of fruit and veg, and cut down on processed food.  I am not perfect - still love chocolate - but it helps to crowd out the bad stuff!  If you are googling, check out sites on eating for gut health.  There is growing evidence that this has an effect on many processes in your body and your wider health.  And it's all based on everyday, sensible foods. 

All the best with your treatment.  This is the worst bit, waiting for your other test results and for your treatment to start.  You'll do fine. It's all copeable with.  Even if I felt rough, I would still do the school run and get the tea.  Kept a sense of normality for me and the family, although my husband was a star too. 

Best wishes,

Linda xx

Thanks so much LIinda for your reply your words are warming and reassuring. No more google x

Hi

I was diagnosed stage 3 oestrogen and her2+ with 3 positive nodes including one with a 1cm tumour in it, plus two tumours in the breast of 4.4 and 2.5 cm. I was terrified. I'm another lucky person who after 8 rounds of chemo had a complete pathological response, a wide lumpectomy (it is very wide but I don't hate it) and full node removal. The chemo got seriously rough towards the end and I did have cardio problems from herceptin but that's rare. As others have posted, it's overwhelming, the waiting is awful and the mind tricks even worse. So many of us are getting great results due to the combination of herceptin and perjeta, you have every reason to be positive. Accept the ride gets crappy at times but each stage passes. Think of literally what you have to face each day. If the answer is nothing, enjoy that day to the fullest. Try to keep some normality, inevitably we get sucked into the cancer world for a while, but I worked part time throughout and walked everyday. It is the chemical menopause that has done me in!

Two things I learned (Im in Spain and had my treatment here, they're very matter of fact and don't really soften anything!): Stay off google. At my hospital it is obligatory to have counselling and they tell you an awful lot, including huge amounts of pathology. There is so much more to a diagnosis and treatment plan than the staging and grade. No two cancers are the same. There  is a lot you can't change - I have some prognosis indicators that are awful but in reality, they will be offset by other things such as the complete pathological response. Also, any research you find is already out of date so not only will it not apply to you specifically, it won't take into account us lucky women who have received perjeta. Secondly, my oncologist said, in response to my question about diet " i don't think now is the time to worry about diet - you have cancer, just eat to get through treatment"!  I think the general advice to reduce alcohol, processed and sugary foods is a good idea just for everyone.

Hold onto the fact that most of us do survive. I'm around 9 months post treatment and to have been so ill almost feels surreal. I do have wobbly days, life is certainly different, but that doesn't mean worse.

Finally, I was a similar age, 47 at diagnosis, and I just wish people had looked out a bit more for my husband who was/is amazing. If your husband/partner has a good friend, have a quiet word so that he gets to go for a pint/watch the football/go to the gym etc because it takes its toll on the people who love us.

Hang in there, it gets better.

Again, thanks so much it’s seriously amazing reading these stories - I don’t have a partner or husband but lucky to have good friends to support me. I have to say I was diagnosed on my birthday and it felt awful however in other respects it’s a total blessing as after what’s probably going to be a bit of a crappy year I will make sure that I celebrate every birthday with bells on - this seriously makes you reevaluate things.

Enjoy the sun in Spain - although I must say we had a lovely day in Scotland today and where I wouldn’t have appreciated it before - today straight after work I went out and enjoyed what was left of the day for a half hour walk.

Thanks again xxx

Hi I was diagnosed with HER2 positive in October 2017, I signed up for the roscoe trial, I had 8 rounds of chemo 1st which ended in April last year, I had a mastectomy in June last year as my lump was big and my surgeon said it was the best outcome for me, I also had lymph nodes removed too as it had spread to my lymph nodes under my arm, i had 3 weeks of radiotherapy which finished in August last year, I also had herceptin which ended in February this year, I now take tamoxifen, I have an injection called zoladex in my stomach every month to try and get me into the menopause, I’m also now on zoladronic acid infusions every 6 months for 3 years, the chemo I had before surgery didn’t shrink my lump but it did it’s job, you will have regular scans during treatment, as other ladies have said just take it one step at a time, you’re team of breast cancer nurses will always be on hand, this forum is great for advice it has been a god send for me, we all know what you will be going through, I know it’s easy for me to say but try and stay strong, always take the offer of help from friends and family, let us know how you’re appointments/treatments go. Xx

Thank you so much and I am very much trying to stay strong - And yes I will let everybody know about my treatment - just want to get the treatment journey started. It's hard though at this point when you feel and look well only to stop, think and realise actually youre not well. I had a lovely night with one of my good friends on Saturday where we laughed, ate and put the world to rights but it was only when she left I thought - how can I feel so good when I'm not well.

Anyway onwards and upwards for all of us xxxx