Secondary dx - what to expect?

Secondary dx - what to expect?

Secondary dx - what to expect? Hi All,

You may have read my previous post re Mums spine mets dx on saturday (Scared for Mum).

Think I’m having an angry day, I was angry anyway that this took 4 months of GP visits to dx!

Mum is currently in hopital due to spinal compression, and was told on Saturday in a very brief conversation from house surgeon that she has several mets on spine, which are inoperable, since then nothing! (she’s still in hospital)

Shouldn’t we have been given some more info by now? Or am I being unrealistic and should we expect to play the waiting game again.

Am getting ready to shout at someone (not sure who!) am I being unreasonable?

What happened when you were dx with mets?

Thanks

Lou
x

Lou this must be such a worrying time for you and your mum. I think you need to phone the ward sister and tell her you want to see her consultant and ask when is the best time to catch him. Ask then what the plan is to treat your mum.

I have had very extensive bone mets - involving most of my spine,pelvis, skull, ribs and collarbone. I have been treated with a bisphosphonate for 4 years now and there has been a degree of improvement. Some of the names you might hear are pamidronate and zometa - they are the main ones for bone mets. Depending on the other scans they may well have some chemo planned as well. Possibly some rads for the pain. Often there is a bit of a delay while they are discussing the best way to treat your mum. If you are not happy with the ‘inoperable’ response then explain to the consultant just how precious your mum is to you and you would like to have a 2nd opinion on that.

Do let us know how things go for you. We are here to support you as best we can.

love, Dawnhc

Hi Lou Sorry you and your Mum having problems with the hospital. Most hospitals have mutli disciplinary meetings where the surgeon, Oncologist, radiologist meet weekly to discuss certain cases. It could be that they have yet to discuss your Mum’s case but if not you could ask for your Mum’s case to be discussed in this way, providing the hospital have MDT meetings.

Does your Mum have a breast care nurse or MacMillan nurse who can help you with the system? I have a Mac nurse who has been extremely helpful - it’s good to have someone on your side to help in these circumstances.

I second Dawn’s advice bisphosonates are a very effective treatment in preventing fracture and helping with any pain. Also radiotherapy is very good at resolving pain.

I too would ask to speak to the Consultant, you both need answers and they can’t/shouldn’t expect you to be left wondering what’s going to happen.

Love Twinkle xoxo

Hello Lou.

I am so sorry to hear about your dear Mum.

Your Mum is lucky to have such a lovely daughter being there for her, I know what a support my daughters have been to me.

I help run a Carers site which has a lot of info in there for Carers.
www.chill4us.com

Don’t forget to look after you as well your Mum.

Hugs Val.

Hi Lou I think the delay may well be for the reasons Twinkle mentions.
Like Dawn and Twinkle I’m also on bisphosphonates and they’ve helped me enormously. I hope you and your Mum will get some answers very soon…Take Care…x

oops I meant to add if your Mum is er+ she may be offered a hormonal option to chemo. Arimidex has worked very well for me for over 2 years now.
x

So sorry Lou I’ve just seen your Mum is triple neg…I should have read your profile before posting about an er+ treatment…x

Sorry to hear your news Lou,

I just read your postings - So sorry to hear about your mums bone mets diagnosis.
Post and let us know how she is getting on.

Am thinking of you of you and your family.
Sarah xx

Joining you girls Hi All,

I have just come from the Newly Diagnosed with Breast Cancer forum as I have just come back from my consultant. I was due for a WLE last week but it was cancelled at the eleventh hour due to a finding in my CT scan. Although I have one more test to have, the consultant is pretty sure that nodules in my lungs are secondaries.

I am due to start Chemo in a couple of weeks time.

You girls are normally so up-beat in your postings, so I thought I would come on for some inspiration…

LOL
Heather

Thanks again! For all your help! you are all amazing, wish i could do something to return the favour!