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.

  • Hi Han,

    A very warm welcome to our forum. 

    I am so sorry to hear of your diagnosis. No matter how you receive a cancer diagnosis, it is one heck of a shock to your system. Even if you were half expecting this diagnosis, your emotions will be all over the place at present. You will find that you can become, tearfil, angry, frightened and in denial - these are all perfectly normal reactions. You will naturally feel worried for your young children too.

    I am so sorry to hear that you lost your mum to this awful disease too and can fully appreciate how much more scared that makes you feel. I was in a similar position 13 years ago. I too had lost my mum to secondary breast cancer, which had metastsised in her brain, bones, liver and lungs. I was diagnosed with breast cancer 13 years ago. I had 2 teenage children at the time and thought that I wouldn't  see them grow up. Since then I have seen them leave school, go to university, graduate, find gainful employment, marry and provide me with 2 beautiful granddaughters.

    I had a second bout of breast cancer in the same breast the following year. Diagnosis, treatments & after care have all improved so much in recent years. There was just no comparison between the experience which mum and I had. I am happy to say that I still lead a busy and fulfiling life.

    Do please liaise with your breast care nurse - I found mine really helpful. If there is anything you don't understand, don't hesitate to ask, as there is a lot of new terminology to get used to. You will find it helpful to write down a list of any questions you have prior to any appointments, as it is all too easy to forget something important during a consultation.

    Please keep in touch and let us know how you get on. You need never feel alone, now that you hae found this forum. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hello Jolamine

    Thank you so much for your kind response. I am so grateful to hear your story and pleased that you have done so well.

    I am slowly getting my head around the diagnosis, I think having watched my mum go through it all, it's made this very black and white for me. I know what needs to happen to my body in order to fight this battle. 

    It's all the other stuff, mainly how it affects everyone close around me that I'm having trouble with. I hate being a martyr! I made the decision to resign from my job today as I had only been there one week when I got the diagnosis and because of the type of role it was, it wasn't fair for me or them to carry on. It's stuff like that, where in an instant my life has changed....I'm finding it hard. 

    But the lovely replies I've had on here are keeping me grounded and I really appreciate it x 

  • Hi Han,

    Having seen my mum go through it all , was too black and white for me and it left me terrified. In the interim between mum's death and my diagnosis, there had been so many changes and my experience was thankfully nothing at all like hers. Do you know what stage your cancer is?

    A cancer diagnosis does affect everyone round about you, but this is not for you to worry about. This is when you have to stop being the martyr for a while and accept every offer of help and care - it went against the grain with me too, but it can be done!

    I am so sorrry to hear that you have resigned from your job. This will make a big change. It would be worth asking about any benefits you might be entitled to as a result of this. Macmillan or the Citizens'Advice Bureau should be able to advise.

    Kind regards,

    Jolamine xx

     

  • No I'm not sure on the stage yet, just that it's grade 2/3. He was reeling off so much stuff on the phone to me that I found it difficult to keep up with him.

    I have another phone call tomorrow to tell me what order they would like to start the treatment but as yet I haven't been in to have an in depth conversation with anyone face to face. I'm sure that will happen soon.

    The only bonus to the work situation is I can have a bit of normality with my boys before the madness starts. I think I will speak with Macmillan, I need to understand if there is any help I can get and then at least that's another aspect of my life that I'm taking control of.

  • Hello Han- sorry to hear about your diagnosis 

    I'm a mam aged  35 I have a 6month old and a 4year old. I was told on 18th April I have her2+ breast cancer (aggressive was used for mine too) I'm stage 3 as it's in 3lymoh nodes. The nurse has told me her2+ responds well to chemo - so they approach it aggressively too. I'm starting chemo first/then looking at surgery option my tumour is 5cm. I've had my ct/mri scan. 
     

    I too was beyond terrified after diagnosis (well awaiting biopsy results were equally awful) but once I was spoken to about treatment I felt so much better- and more positive. I was told face to face but there was so much information, myself and my mum and sister took little bits in. I think it's just awful every which way- your keyworker (cancer nurse can help with any questions- I've started writing them down) feel free to message anytime. I'm finding this group and one on Facebook really helpful and supportive x

  • Thank you so much for replying ️

    I'm sorry you're having to go through this but I would love to stay in contact. I'm eager to get started and get a treatment plan in place as I'm someone who needs to have a plan and know what's happening next! 

    They had to take 5 biopsies from me and 3 of them took quite a bit of rooting around so I'm still tender after a week - my brain is imaging all sorts and I'm convinced the pain is a sign it's spreading. I'm also very aware that my mind is capable of creating these sensations so I'm trying not to over think....easier said that done

  • I know I was exactly the same! I'd convinced myself it had spread (it hasn't ) but our minds do funny things. I ended up having night nurse to help me sleep as found the nights hardest to get through while I was waiting 
     

    I had about 4 biopsies and was all bruised- I found even a week later ot was still sore. I took paracetamols and ibrofen too. Then it was really itchy- I have clips in place too. 

  • That's sound like me, I've had the clips too. It's very reassuring to know I'm not alone in this journey,  but I'm equally sad that you're having to go through this. 

    I've now got to spend the day waiting for the phone call to find out what treatment I'm having first....need to keep busy ️

  • I know how you must feel Han. I have only recently been diagnosed and finally received results over the phone but family and friends live a long way away. I wish you the best through it all.

    I had a mammogram only a month after my mothers funeral (cancer related). I have just been diagnosed with stage 3 Her 2 left breast, and stage 2 in right breast.

    Research shows chemo is best to shrink and control cancer prior to mastectomy if not contained. I have just been booked for a double mastectomy with lymph removal for 16th May, then chemo and radiotherapy together after.

    Looking forward to fighting this thing as waiting is a very difficult stage and I certainly understand the emotions you are feeling. This chatline and research was a huge comfort as results are better than expected. Lets try hard to fight this thing as we have too much to live for xx

    All the very best. x

  • Oh gosh, I'm so sorry you are having to go through this - especially so soon after losing your mum.

    I'm the same, I'm eager to get going but the waiting is hard.

    Please keep me updated ️