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Breast Cancer Her2 positive

hello thank you for allowing me to join I had a very small amount of cells in

my breast after I had a mastectomy because I had lots of DCIS

after my treatment which was 12 chemo and six months of herceptin only another one

to go it’s changed now used to be a year of herceptin but now it’s six months.

how do people cope after treatment mine is not receptive to hormone treatment and

its aggressive

and I don’t have any follow up so I don’t know if it’s gone or even if it was in my body

a scary time. Thank you if anyone has faces this problem I would be interested in your comments

viv xx


  • LouiseJLouiseJ Posts: 770 ✭✭✭✭✭


    Hi Viv,

    Welcome to the community, it is lovely to 'meet' you.

    Thank you for sharing part of your story.

    It sounds as if you have been through much, and the uncertainty of where you are now regarding the presence of cancer is very scary for you.

    There are a lot of others here who have had herceptin treatment, and I hope they will get in touch to share their experiences with you too.

    If you are uncertain of your position, I would definitely suggest you contact your drs to find out where you stand medically. They should probably be able to give you some information.

    Life after cancer and treatment is hard, and it takes time to adjust to the new way of life, which has changed. We find ourselves having to find a new normal, as the old normal moved on! Taking things day by day, being kind to ourselves. The trauma of cancer effects us mentally and emotionally, this is just as hard to deal with as the physical aspects of cancer. Some things have changed forever, others are new and we have to adapt to them, to make the most of living our lives.

    Everyone who has been through cancer will have their own story and version of how it has changed them, and their life.

    Everyone here is very friendly and supportive, please feel free to come and chat at any time.

    Take care,

    Lou x

  • Blanka_CBlanka_C Posts: 406 Community Admin


    Hi Viv, welcome to the community and thank you for sharing your story.

    I do not have experience with herceptin treatment personally, but I do agree with Lou that talking to your doctor is a good idea if you're unsure of your situation.

    I found this discussion about herceptin, feel free to join in:

    I also wanted to let you know that we have an oncology nurse on board with us, Liz @LizzyB73, who you can ask anytime if you have something on your mind. Please feel free to reach out to her on her expert page here.

    I hope you are keeping safe. x



  • VivViv Posts: 21 ✭✭

    thank you for your welcome I wish you all well with this horrid virus it’s very scary.

    herceptrin has changed it’s now for six months and not a year so does not effect

    the heart as much I have HER2 positive and it does not respond to treatment

    with medication so scary time it was only small but aggressive I have one more

    treatment of herceptrin then it’s all over for me I don’t have contact with any one

    my breast nurses are not the most understanding maybe it’s my age 67 and my

    oncologest will have finished with me so I now hope it does not come back



  • LizzyB73LizzyB73 Posts: 112 Oncology Specialist Nurse



    So many women in your position say that once treatment has finished they feel very isolated and it’s like falling off a cliff. This is where support groups like this can help. This is also very poignant at this time of covid 19 situation.

    People here are very friendly and will offer support and friendship.

    I so hope you are also able to tap into support from your hospital breast care team who totally understand and will listen to the smallest worry you have.

    Each day that goes past cancer free is a day to cherish

    Sending my best wishes

    Liz 💕

    Liz Bradley
    Oncology Specialist Nurse | Oncology Service Manager @ Springfield Hospital
  • VivViv Posts: 21 ✭✭

    my story is a bit like a horror story hip replacement

    then a mammogram DCIS

    after masectomy I was told HER2 positive + before treatment MRI

    kidney cancer very small so very lucky had kidney removed had to wait for my treatment for breast cancer then husband had

    a cardiac arrest he did survive if he had not I would not of not had chemo.

    anyway all most finished

    one more herceptin left

    i don’t think unless you have lived it any one can

    understand how stressful

    it has been at the moment I don’t cherish any day that goes past.

    but time heals

    thank youViv x

  • VivViv Posts: 21 ✭✭

    Well I’m almost there tomorrow I will speak on the phone to my oncologist and then she will write me off it’s very scary no support.

    and then on Thursday my last to hospital for my last treatment.

    mixed feelings one of relief I’m going to feel better. And one of being very scared not knowing if my treatment has been successful.

    I'm hoping that as time goes by and I feel better I will be able to cope with the fear of not seeing any one again.

    viv xx

  • SunshinedaffSunshinedaff Posts: 1,407 ✭✭✭✭✭


    Hi Viv,

    I have been reading your other posts on the other discussions. You have been through a lot, with both cancers and dealing with your husband's illness at the same time.

    I hope your last treatment goes smoothly on Thursday.

    I understand your trepidation and anxiety at being 'cut loose', with no more follow up checks etc.

    I am coming up to five years diagnosis and I think I will be off the books by the autumn. I think I have another oncology check up in September, but that will be the last. Of course with the pandemic a lot of routine follow up appointments may have been delayed, so perhaps it will be later.

    I feel the same as you, at the moment, I can contact someone if I have a concern, it is acted on very quickly. After September I will need to go via my GP and referrals etc. It is a nervous thought.

    I am well, and long may that continue, but I will miss the reassurance I get from oncology and the quality of care I have had.

    At least you know you are not alone in having this fear of not seeing anyone. I am sure many others in the community who have already been where you and I are, will be able to share their insights.

    You are in the right place for sure, here, to come and share your thoughts and concerns, where others will be able to understand, empathise and support you.

    Chat soon,

    Lou xx

  • VivViv Posts: 21 ✭✭

    Hi Lou

    I think treatment is a little different in the UK I had a phone call

    yesterday from my oncologist and that’s it no more contact

    no scans or MRI to see if it’s gone so scary unfortunately my

    breast cancer does not respond to any thing other than chemotherapy and herceptin. So it’s just a hope that it is gone

    i do have the nurses if I need them but to be honest they dont

    really want to help if some one is terminal they help I’m not..

    This horrid disease robs you of your personality for a time I think

    i was once full of confidence but thats gone but it’s been a year

    so I hope I will feel better about things once I get used to it.

    I am really pleased you have been free I hope you feel you have

    your life back thank you so much for your message it means a

    lot to me stay well.

    love Viv xx

  • SunshinedaffSunshinedaff Posts: 1,407 ✭✭✭✭✭


    Hi Viv,

    I am sorry to hear you receive a less personal care from your drs. I think even here in the UK, the standard of care can be wildly different depending which area people live in.

    I think I have been very blessed to receive the care I have. I cannot fault them.

    My life changed after my diagnosis, I left my job after treatment had finished. I was not ready to return, and had no idea how long it would take. I just felt it was right to change and leave. It gave me time to process, think, get some recovery, which has been up and down. I still have side effects from treatment, operations and medication. I now do life very differently. I am hoping soon to return to swimming, I heard it could be in July they reopen the pools. Swimming has been my main source of getting fit post cancer. I decided I was going to live each day as best as I can, seeing as how I have been given another chance. It could all have ended very differently.

    Then of course I joined the community and life changed again. I love meeting, and chatting with others here, I have made some solid new friendships here.

    I am sure you will get to know us soon. Everyone is very friendly, anytime you want to chat, someone is usually around to join in.

    I hope you have a good weekend.

    Chat soon.

    Lou xx

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