Worried about bone mets! Help!

Kiwi79 16 days ago

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Hi all,

I have grade 2 stage 3 triple negative breast cancer and have had 6 months chemo (PC and EC) alongside immunotherapy and mastectomy 4 weeks ago. The histology showed only 4mm tumour remaining (was 78mm pre treatment!) and only a few isolated cancer cells in 2 of the lymph nodes removed.

I am waiting for the next step of radiotherapy.

For the past 2 weeks I have had an ache in my left hip, most noticeable when walking/moving especially when I move the leg back. My lower back is also a little uncomfortable and I have pain in my left elbow (but I think I may have overdone it with my arm exercises!).

I am really worried about bone metastasis and I am struggling with switching off. I have spoken to my consultant who thinks mets are unlikely. I mentioned a scan but he said if I do this it could delay my next steps/radiotherapy. But I can’t get it out of my mind!

Anyone had anything similar? I am so scared it has spread and I am now terminal.

Thanks

Coddfish 16 days ago

I attended Making Seconds Count’s conference recently. Multiple speakers, mostly oncologists but also other disciplines. In the session on TNBC it was stated that TNBC spread is more commonly to liver and lungs, not bones.

Recent issues with my left hip turned out to be osteoarthritis and disappeared upon total hip replacement.

I would also take hope from the effect pembro had on your primary. It clearly triggered your immune system very well.

I have been living with metastatic TNBC since 2022 and am a long way off being terminal thanks to pembro.

Kiwi79 16 days ago in reply to Coddfish

Thank you for your reply.

I am so pleased you are doing so well!

jlw 16 days ago

hI - since getting BC diagnosis 2 months ago (chemo pre surgery starts tomorrow) have thrown myself into exercise... lots of it. walking every morning for 6 plus miles amongst other things... I over did it . my left hip was sore, and getting worse. my mind too spiralled... i went to a physio who said I have a ten per cent tear in my hip flexor muscle... gave me some exercises and am well on way to repair... just need to build up very slowly.

but of course everyone is different - just wanted to share for support

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Worried about bone mets! Help!