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Triple Negative BC Bone Mets and what to expect

KAR32
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Hi

After a hard battle in 2017/2018 with TNBC at 42 yrs of age-which resulted in chemo, mastectomy more chemo and radiation I thought that I had made it and had a wonderful year getting back to life with my beautiful children and amazing family and friends. 
 

Then Nov 2019 I went for a routine check up mentioned minor back ache and after a MRI, CT Scan and PETScan was rediagnoised with Bone Mets in nearly in every bone. It had silently crepted around my bones. 
 

Since November I have been treated with Immunotherapy and Chemotherapy with a mixed response. 
 

I would be grateful to hear what treatment other people are on and how you are doing? 
 

I have just got my head around it being incurable but it's the not knowing when the pain will really start or what life needs to look like now? What decisions I make about work and what the outlook will be for my children, family and friends. 
 

Sorry for the long message and it would be lovely to speak with people who are in a similar position to understand what does tomorrow and the next day or month or year look like. 
 

Wishing you all the best

KAR 

 

  • Offline

    Hi there Kar...

    So so sorry your going through this heartbraking time at the moment,  it must feel so confusing, with a huge question mark ...

    I'm not qualified,  but from being on here nearly three years ... no two are the same... everyone's journey is slightly different ... if I were you, I'd write down all my questions, and call your oncology team, and tell them you need more advice, even if it's an average, or a maybe ... but you need to ask those who have your records and know your history....

    My thoughts are with you, this is something we all know we could have at any time ... I so hope you get those answers to your questions .. but please remember, there's no hard and fast rules to cancer ... Will be thinking of you ... I hope others come along to give you more advice then I have ... we do have a few members on here, who are living with a terminal diagnosis... and pushing those boundaries...

    Sending you a vertual hug.... Chrissie x

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    Hi kar

    Welcome to the forum the club nobody wants to join. 

    I've been uncurable (now classed as palliative care) since February 2016. Stage 4 prostate Cancer gone to lymph nodes, spine, ribs, pelvis and a lung, I'm on permanent hormone therapy and cemotherapy when kneaded. Just living with my" uninvited guest "

    Was working metal fabrication and welding all the way through treatment, odd days off if not very good. Had to retire to look after my disabled wife she needs 24 /7 care she has Alzheimers and parkinsons, I'm her official carer. (unpaid).

    If i can help in any way please let me know. 

    Billy 

  • Offline in reply to Chriss

    Hi Chrissie

    Thank you for your advice. I did send my consultant a list of questions and I was able to get some answers that have helped. 

    I think I am trying to makesure I am on top of all the information because there is so much out there. 

    My treatment has changed due a partial response so on to the next chemo GemCarbo.

    thank you again 

    best wishes

    KAR 

  • Offline in reply to Billygoatt

    Hi Billy

    Thank you for your message and sharing how well you are doing on medication. It's was good to hear that the treatment can help control this disease and give us back some years. 

    Wish you the best for you and your wife. 
    Thank you

    KAR 

  • Offline in reply to KAR32

    As soon as i was diagnosed uncurable. My first thought was get everything sorted wills funerals. So no messing about at last minute. And it feels better knowing everything done nomatter what happens next. Like you i had no idea about cancer in my bones or anywhere else, I kept being sick badly. Turned out to be a hernia. But one of the blood tests showed something wrong other places or would never have known till to late for treatment. So really i was lucky. Remember to be positive and keep fighting. 

    Billy xx 

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