OESTROGEN BREAST/BONE CANCER to HERCEPTIN POSITIVE BRAIN CANCER

FormerMember
FormerMember
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I have had a very weird cancer journey.

I was diagnosed with breast cancer in 2009 which was caused by oestrogen. I had a mastectomy, reconstruction and told I was 'cured;, given tamoxifen and continued with my life.

In 2012 it returned to my bones (spine, ribs, shoulders) and was told I had 5-10 years. I was put on oral chemo and then to hormone therapy.

I survived 7 years and then in July 2019 it spread to my brain. I had 3 tumours - one removed surgically and the other 2 with microsurgery. Originally I was told this was 'end-stage' cancer - the last diagnosis you want to hear!

The most surprising result is that the brain cancer had changed to herceptin positive, so I am hoping to get on some trials. Now I am told that when/if the tumours return, I have an 80% chance of removal recovery.

Is there anybody out there who has gone through this experience? If so, what treatment did you receive and how are you doing?

I am very angry,very frightened and very confused. Every website seems pessimistic, and I need some optimism.

My hospital care team have been amazing. But I live on my own - no partner or children, and all my family live 60 miles away. Yes, I have good friends where I live but don't want them as carers. Do I just play the waiting game?

Would appreciate any advice or experience to give me something to cling to.

I had surgery for one tumour in the cerebellar area which was sucessful (apart from further surgery straightaway for water on the brain). But I cannot get my head around (pardon the pun) is why the cancer has changed it's status from oestrogen to hep positive.Two of my neighbours are doing research into brain cancer and they too are puzzled as to why the cancer can change it's nature.

I try to think of it as a positive;  by which I mean that I couldn't have chemo for breast or bone cancer, but can have chemo for my brain. But I am more concerned that the cancer may affect the cognitive side of my brain and I could lose the essence of me - my speech, my memory, my sense of humour.

When I was diagnosed with bone cancer, I always knew that it was a stepping stone to the next one - but I thought it would be my organs. However it seems that the brain the is new pancreas. I am just so lucky that my GP was on the ball and sent me for a head CT outpatient which resulted in an admission for MRI and surgery 10 days later.

My world has fallen to pieces and I feel so alone. Not only am I not allowed to drive, but my local bus company has closed its route to my hospital for 6 months, so my only travelling option is taxis - and they are not cheap! I have been protecting my family for so many years now that they see me as a role model, inspirational - but I am so tired of being strong. They have to realise that if the chemo doesn't work, I have 2-3 years. But then how much longer will the chemo give me, and do I want to go through all of that for another year - coping on my own and trying to maintain my indepedence?

I have lots of questions but as yet no answers.

I have a meeting next week with my oncologist and hopefully he will continue to be honest with me. We have a great relationship and I trust him implicity.

Tobie x

Unbalanced of Cambridge

Unbalanced of Cambridge

  • FormerMember
    FormerMember

    Dear Tobie

    I am sorry to read your post. I can see how alone you are feeling and despairing.

    I am sorry my journey is different to your's but I do have spread to my brain like you do.

    I too felt lost when they barred me from driving. My car is due a service this week actually, not even sure it will start. 

    For transport, have you asked if there are any volunteers or charities that may be able to help you fund the costs of your hospital transport? Please give Macmillan here a call and ask 0808 808 00 00 . They may also advice on any other support you can reach out for. Such as PIP etc (not sure on your age).

    It must be difficult that your family are so far away, but they don't realise we need some help until we ask sometimes. Please try and speak to people.

    I know what you mean when people say we are 'role models' etc, it shuts us down to admitting how scared we actually are and means we keep it in rather than letting it desperately out. I hate it.

    Please speak to your oncologists about your fears and ask him too. You need some support and we must ask for it.

    Giving you a supportive hug, sorry I am not much help.