I’ve just been diagnosed with Her2+ grade 3 breast cancer and a tumor size of 9cm. Currently no lymph nodes involvement based on scans but often I read other stories after surgery result come back different. I’ve been reading online about my type of tumor that it has high chance of reoccurrence despite my doctor saying the intention is to cure and I might get clear PCR. My doctor also said currently the treatment doesn’t prevent spread to brain due to blood barrier so in the future will do brain scan after treatment and surgery. Has anyone else been diagnosed with something similar? Feeling down and worry about my future…
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Hi, I was diagnosed with the same 21 years ago. I am fit a very well and have been all these years. Hang in there and dont scare yourself googling. Just listen to your medical team. Best wishes.
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Mine was a large HER+ (11cm from CT) with positive lymph node biopsy. [jan 2026]
The intention to cure is not discussed lightly by oncologists.
The aim of my treatment was to shrink the thing prior to surgery and hopefully I would have clear margins. Then the Ct scan threw up the possibility of stage 4 which further tests proved to be congenital cysts. Scans of nodes did not look great so ALNC. I did not cope. Chemo made me very ill as I have a number of drug allergies and that triggered them to the hilt. my oncologist worked very hard to find ways round Ìt all to make it more bearable for me.
Except the surgical histology results post chemo were astounding. Complete pathological response, totally clear margins, the edge of what they had though was a very large tumour was DCIS and that too had shrunk. Nothing was found in any lymph node and no scarring was found either. I am still having to pinch myself and reread my histology results.
TBH my oncologist was the only one who thought I could get a better result than the MDT considered Ì would have. I have five days of preventative RT starting this week and Phesgo till the end of June. Try to hang on to a glimmer of hope and if you’re struggling to manage that let the medical team hold that for you. Call your hospital BCNs or write to them if speaking is hard to do and ask for extra support.
It’s okay to call the BCN helpline and talk with one of the lovely BCN on the helpline. It’s okay to let the team caring for you know you’re struggling and need some more support be that verbally, by a written note or taking someone you trust to advocate for you. I needed a lot of support and extra speciliast trauma counselling and trauma therapy as I already had trauma to the point of PTSD Ì did not realise was there before the diagnosis. It’s okay to not be okay and reach out for help. The hospital BCNs will be able to signpost you to support in the area you live.
Try and keep away from Google and stick to the info on the BCN main website as it is up to date, relevant for the UK and a lot less scare inducing if your anxiety is on over drive.
HER and need some buddies is a good thread as it has woman with HER+ at various stages of their journey who encourage and support one another.
Hope all goes as well as it can for you.
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Just to add to @wibbles story - my cancer wasn’t as large, about 8cm at initial diagnosis, but also HER2+ (and Lobular type). I also had neoadjuvant chemo to try shrink the tumour and give me a better outcome from surgery. My post chemo scans showed no evidence of active disease and the surgery showed Pathologic Complete Response. I was stepped down from Phesgo (trastuzumab and pertuzumab) to just Herceptin which I will complete in April. I had 5 days of radiotherapy (part of fast forward boost trial) as a measure of prevention against recurrence.
Obviously none of this means I’m clear and safe, but getting a PCR suggests good outcomes many years after treatment. I’m 37 now and hoping for many more decades to come, cancer free.
Hoping this will be a ray of hope. How recently did you get your diagnosis?
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Hi, I was diagnosed with the triple positive breast cancer, and was told by the team that the aim is to cure it. HER2+ is a nasty cancer, but the treatment for it is super effective, there are several treatments targeting it from different angles and they work amazingly well now because the targeted therapy is very specific for HER2+ whereas chemo just zaps cancer everywhere in your body. If one chemo doesn’t work, your oncologist will select a different one. I presume that you will be having neoadjuvant chemo, meaning that they want to kill your cancer even before the surgery with the surgery confirming that it was done. Targeted therapy will prevent it from reoccurring. I think that getting this type of cancer now is a lot better than 25-30 years ago because the treatment is so specific. It’s hard not to worry so much, but we are being treated with highly effective medications now and the outcomes are good and keep improving. Early breast cancer is very treatable now. Please stay strong and hope for the best because your chances are good 
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Hi there @her2mum3005. sorry you’re here but welcome to a warm, friendly and supportive space.
I had a dx exactly 12 months ago almost to the day of HER2+ve stage II/III with no lymph node involvement.
Hang on to that positive. So far, no lymph node involvement. Yes, it could be a different story on further investigation, but right now it is looking hopeful on that front.
Another huge positive is that they are talking about curative treatment. This is good.
I didn’t have a tumor, I had cells in the skin and it was also presenting as a scab. I think possibly Paget’s, or at least the lesion mirrored exactly how Paget’s is described. So by my logic, my cancer was a bit more feral. As a result, they did chemo prior to an operation, and in my case I had a full mastectomy. They removed 2 lymph nodes and they were clear.
Currently I have no evidence of disease.
I totally understand your fear and concern. We’ve all been there and we know how distressing a time this is for you. Do what you can to extract the positives. Take a trusted friend with you who can sit and listen impartially so that you hear their version of what was said in appointments. Do your best to trust your team too, even though that might feel really, really hard.
You can have a chat with the ‘Someone Like Me’ service here on BCN and they can match you with someone with a similar dx. It really helps to talk to a stranger who can coach and support you on the phone.
Break it down into manageable chunks. One meeting at a time, one day at a time, even one hour at a time. Seeing the whole picture will only serve to overwhelm you.
We’re all here for you if you need us. xxx
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Thank you so much ladies for your reply. It’s lovely to find other cases like mine with a large tumour and a positive response. I have started TCHP chemotherapy and targeted therapy and had on session 3 weeks ago and due for my second one next Monday.
When I was researching online, most tumours were much smaller than mine and it seemed common for those of that size to have spread to Lyme nodes or other part of the body. I really regret not seeing the doctor sooner when I first noticed the lump.
My oncologist is quite reserved regarding prevention for metastases. She explained that microscopic cancer might have spread undetected by a PET scan or ultrasound and mentioned brain metastasis. This makes me worried about the future. I’ll contact BCN and hopefully they can connect me with someone similar to my case.
i am really hoping to be able to see my daughter growth as she is only 8 years old. Do you guys worried the risk of reoccurrence?
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TBH Oncologists HAVE to warn of all the possible outcomes at the start of treatment. Most respond well but occasionally you can have someone for whom chemo plus targeted therapy does not help. I do not think they are at the point they can identify who those are so take heart in the fact your oncologist is aimming for chemo as a curative treatment. Add surgery after chemo for HER+ and you raise your long term positive outcome far more.
Try and tackle what is facing you today and only that. keep putting one foot in front of another to the best of your ability and know that we are here and cheering you on with each faltering step you take. Yes it’s scary and you’re allowed to feel how you feel. you should have seen me a few months ago, Ì was an absolute mess on the verge of a complete breakdown. Thankfully the extra support and reasonable adjustments my oncologist pushed for to help me cope a little more have and still are helping make this more bearable. ( Ì gave permission for the impact of trauma to be disclosed to staff in every section of the hospital Ì have been to as part of my treatment. saved me having to repeat explanations in every new setting)
You can find support in the Chemo monthly threads and you may find the treatment tips section of this forum helpful when you feel ready.
Please be aware the treatment for HER+ can often make your hair fall out even with cold capping so make sure you have some kind of headwear and wig ready in case that happens after your second treatment. Not something I would wish on anyone but it does mean the drugs are targeting all those pesky fast growing cells and hopefully hitting the HER+ too.
As for recurrence, I thought based on initial findings and tests that I would be dead by this summer so every single extra day is a gift. I doubt any of us are unchanged by our experiences but with support life will regain some of its colour and joy.
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I had a stage 3c HER2+ with lymph node involvement and had total lymph node removal and mastectomy post 5 month of Chemo followed by a month of Radiotherapy and there is still no evidence of cancer after 3 years . I also know a lady who is 18 years post same stage cancer and still having a reasonable quality of life so do not loose heart in spite of what you read . Best wishes !
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Hi @her2mum3005 welcome to the forum that nobody wants to join but when you are here you will feel so supported.
I can see someone has already posted the link to a very friendly and supportive thread called HER2+ and need some buddies, it’s been going for nearly 3 years. Our treatment plans can last over a year so great for that ongoing support or just somewhere to share with others who get it.
Monthly chemo starters thread has already been mentioned, this is for October 2026 if you haven’t already joined. You join a thread with others starting chemo in the same month as you and you can get to know and support each other. In my own thread, one lady made a Spotify list we shared and listened to. I used to listen when I could walk.
I joined a local support group and met a lady who was one of the first to get Herceptin many years ago. She is still thriving and this gave me such hope. HER2+ is an aggressive cancer but Herceptin and Phesgo have been a game changer. This year I eventually watched the movie Living Proof with Harry Connick Jr playing Dr Dennis Slamon who developed Herceptin as a targeted treatment.
Take care
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