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Had to stop kadcyla due longterm sideffect worried what happens now breast cancer end stage

Kw4
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I have been diagnosed with terminal breast cancer 7 years ago had mastectomy axillary lymph nodes removal chemo and radiotherapy then targeted immunotherapy  and when that stopped working on 3 weekly kadcyla since about 2 years metastases in mediiastinal lymph nodes regular pet scans showed no cancer activity so far  

3 weeks ago had to stop kadcyla due long-term sideffects mainly liver fibrosis low platlets increased liver and renal enzymes next pet scan scheduled in 2 months to check if or cancer activity 

I am just really worried what happens if cancer active again oncologist told me there would be oral medication available but was a bit vague about it now I am worried and anxious I asked them to be open with me and tell me if I have come to the end of the line as I would than change my current lifestyle but I suspect they are not open or honest 

I still work almost full time but if I knew that's it I would want to make some significant lifestyle changes 

Could someone be honest and direct with me what if any treatment options are available for me now I really need some honest information and despise that vague approach which is probably kind but doesn't help me 

It makes me feel like a lamb gentley guided to slaughter please I need no gentle braking of bad news but facts and reality 

Thank you so much if you could provide me with honest facts

Katja 

  • Hello Katja, and thank you for posting.

    I am sorry that you feel that no one is being honest with you, and giving the facts you need. Unfortunately, as we are not doctors we can also not give you a medical opinion about your situation.

    I think if you feel your team is not being clear with you about your situation, it may be that you ask for a second opinion. But, I would expect the doctors to always be clear with patients if they felt that things were coming to the end of the line. So it may be worth trying to organise an appointment to get the straight answers you need, you could also contact your breast cancer nurse to let them know how you are feeling about the future.

    Breast Cancer Now, the UK's breast cancer charity, have information, if useful, on living with secondary breast cancer.  

    Take care Katja, and I'm sorry we couldn't help you, but I hope you get all the answers you need soon. 

    You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Sarah

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