Secondary HER2 brain tumours

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I n 2009 diagnosed with DCIS breast tumour - oestrogen based. Had LD flap reconstruction, told I had a 2% chance of cancer returning. No chemo or radiotherapy; only tamoxifen which I did not take.

In 2012 the oestrogen cancer spread to my spine, ribs and shoulders.

In 2016 the implant from the reconstruction had to be removed because it was floating as I had lost so much weight, and couldn't be replaced because the skin was too thin. So I had the healthy breast reduced and a poor tidy-up of damaged breast. You can't make a silk purse from a sow's ear, and not having a breast at all wasn't on the agenda.

In 2019 the tumours spread to my cerebellum, but manifested as HER2 - 1 largish tumour and 2 much smaller ones

Large tumour removed surgically In July 2019. Told it had been 100% removed!

Two smaller tumours too small for surgery, so treated with one course of targeted radiotherapy

In November 2019, I developed an infection over operation site and so had further surgery -  removing part of the bone

A routine MRI in February 2020 showed that surgically removed tumour had regrown, and another one formed

Diagnosis? End stage/Stage 4 cancer - palliative care only!

In March 2020, rght at beginning of Covid lockdown, I received 3 cycles of targeted radiotheraphy. Bad side-effects

October 2020 emergency MRI scan showed the tumour had grown back again, and had brought a friend for company.

Two weeks before Christmas I was received two cycles of chemo - should have been three, but last one cancelled due to high demands for chemo and limited staff

Lost all body hair and felt pretty bad

Currently undergoing 3-weekly antibody infusions.

Regular MRI in February 2021 showed that the tumours had reduced, but cautiously optimistic because this could be result of chemo rather than antibodies. It is known that Herceptin cannot always break through blood-brain barrier.

On Easter Sunday my left leg stopped supporting me - can't raise it horizontally. This is the first symptom to indicate that tumours are on the move. Also slight unsteadiness when walking, but no pain

Am waiting for MRI next week, meanwhile taking steroids and anti-depressants

I am 68, single, no children and live 60 miles away from my brother and his family. He has 3 children - 2 married with young children, and one diagnosed with ME.

I also have a 98 year old mother living in a London care home with severe dementia. Can't talk to her as she is deaf. Also, she doesn't recognise me, but could perhaps notice that I have a bald head, which might alarm her and I can't explain or comfort her.

I have friends all around the world who are very fond of me, but they can't help me. I know that it is down to me to cope - there's is nothing anybody can say that will help. I want them to understand without having to ask. I want to protect them - like many people I am better at giving than receiving.

Obviously I am very scared for my future. I am very stubborn, independent (described as a control freak) and find it very difficult to ask for help. Only my brother, one friend and my hospital support team are aware of what's happening. Can't reach out to friends - they are dealing with their own problems which are exacerbated by Covid and lockdown restrictions.

I don't want to be pitied - I am much more than my malignant cells. I have a good sense of humour, am used to living on my own but have lost motivation. Not being allowed to drive has blocked so much of my freedom. I love the cinema and theatre, and dining out, and share these outings with local friends. But none of these are currently available. And although from next week I  can meet up outside with friends for coffee, I am not mad about coffee and it is too cold to sit outside. Also, I want to book an overseas holiday but Covid and my health issues prevent me from doing so (can't afford cancer health insurance).

Is there anyone out there who is going through a similar situation. If so, have you any wise words to help me through?

  • FormerMember

    Hi Unbalanced! Not quite the same situation - partner was diagnosed stage 4 terminal from day 1 with brain metastasis but we totally get where you are coming from.  We had just managed to fulfil our life plan of early retirement whilst we were both fit and well enough to travel and do all the things on our bucket list - then BOOM life decided there was another path for us. No words of wisdom but sending you love and hope. Xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Many thanks for replying. I know there are no words of wisdom, but it is somewhat reassuring that I am not alone.

    I do hope that life continues to go well for you both, and that you can get as much pleasure and enjoyment as this wretched disease allows.