I feel so alone..been told I have HER2+ breast cancer & DCIS

Hi everyone, I've been lurking in the background until I had my diagnosis yesterday but had a feeling I would be reaching out eventually. 

 

I was told yesterday over the phone that I have HER2+ breast cancer and also DCIS so I'm looking at a mastectomy and chemo but they need to decide what order to start treatment. There is only so much they can tell you over the phone but I can't help but feel it was all such negative news with the words aggressive, waiting list for oncology etc being used and I'm really really struggling. 

 

I am 39 and have two children, 6 and 11. I've never felt so alone. I feel like because they used the word aggressive that it's literally spreading already and my days are numbered.

  • Han 

    welcome lovely 

    I had breast cancer last year it was a shock I completely understand they way you are feeling right now , but things move quickly I'm fully back to normal crazy life already 

    Mine was her- 

    my good friend had her2 positive 6 years ago goes for her 7 th mammogram next week hers was also grade 3 she's not looked back 

    I think it would have been better if you had had your diagnosis by face to face as you ate probably in limbo and have many questions you want answered by the professionals 

    breast cancer now is not what it used to be it's highly treatable and manageable and there are ladies on the forum who are on up to 15 years ago diagnosed with this horrible disease and who have had treatment and lead normal lives now .

    please don't feel alone we are all here lots of lovely ladies will come forward to help advise 

    I'm here to chat or help anytime lovely 

    good luck love Lara ️

     

  • Thank you so much for your reply, it genuinely means alot. I think you're right, I had this news pretty much dumped on me less that 24 hours ago and was just told all the hard facts and had no reassurance. 

    I lost my mum to secondary cancer 10 years ago, hers had originally started with the same form of cancer as me 5 years previous to that so all I can do at the moment is compare and it's not helping matters.

    Being on here seems to be the only thing that is grounding my wild thoughts at the moment xx 

  • Han 

    yes I definitely think that as it wasn't face to face it seems much worse too 

    I no a diagnosis is not easy whichever way but it would have been better face to face . 

    sorry about your mum , this also is a lot to deal with as you have been through this all before .

    It's hard not to see light at the moment but I really think when you get your appointment you will feel much better when you have gone through everything.

    love Lara ️

  • Sorry about your diagnosis @han1983.  I was given my results on 20th Apr, IDC Er+ Gr3 but still waiting for HER result and I have an MRI today.  I can understand why they don't try to "pretty up" any of the terms they use but appreciate it can be harsh, especially if being told over the phone.  Mine was face to face, my partner was there and a specialist nurse who then took us off to another room so we could get over the shock before being chucked back out to the waiting room.  Amazes me the difference in service between trusts.  Did they give you a number to call if you'd like to speak to a specialist nurse?  If not, I think this site and certainly Macmillan have nurses you can speak to if you'd like to get come clarity on the word aggressive in their terms etc.  Might help and reassure you a bit....

  • Thank you for your reply  

    They gave me a card at the screening I went to, they forewarned me then it looked cancerous. 

    I just so happened to receive a phone call from the breast cancer nurse this afternoon and she has been able to instill a bit of calm in me. She just explained everything to me in a thorough way and I was so appreciative!

  • Hi han1983, sorry to hear about your diagnosis. I had a grade three tumour removed a few weeks ago. My surgery was put back three weeks because I was still waiting for Her2 results and the consultant reassured me it would not make a difference as I too was imagining the tumour ballooning in size by the day. All the best with your treatment xxx

  • Thank you for replying

    How are you doing after the op? I hope you're recovering well.

    Xx

     

  • Hi Han, doing well thanks. I had a lumpectomy and sentinel node removal - radiotherapy is the next stage for me. I was assigned a BC nurse when I was diagnosed and hopefully you will get the same so you have someone who can answer questions/give you support. It takes a while to get your head round that's for sure and it can hit you in waves. You will hopefully get to talk to your team face-to-face soon xxx

  • Hi Han, trust me I know how scary it is, I've just had my first oncology appointment today to discuss treatment. He mentioned aggressive chemo first but after examine my wound as I have a fungating tumour he's changed his mind and is having a meeting with the surgeons to see if it would be great to have a masectomy first, as he said cause if the wound if I have chemo first and hormone therapy I'm at high risk if sepsis, and if I dint respond well and he uses the hormone treatment then he cannot use that treatment ever again.

    Mine has spread to the lymph nodes, but not anywhere else , but I have a large 4cm mass under my arm and my breast one is 9.5cm. 

    I am estrogen positive which is a good thing and I'm HER +2 but they call that borderline and do a FISH test to check which makes me negative. Have they not done a FISH test with you ? Ask for one as it's borderline.

    Mine is locally advanced , invasive ductual carcoma , yours sounds like it's in situ. Not spread beyond the breast.

     

    I know it's hard but try not to worry xx