Firstly I'd like to say it never ceases to amaze me how women seem to deal with this most evil of diseases, bless you all.
My dear wife passed away at the end of March this year due to 2nd triple negative breast cancer, brain mets. This was a great shock to us as her treatment seemed to be focused on Lung, Bone and Liver, all of which were stable or showing shrinkage after just over a year of treatment. It wasn't until early January that she suffered a slight seizure and following an Xray in A&E tumours were found on her brain. These were successfully removed surgically and Gama knife treatment within 2 weeks. Our elation was short lived as within 6 weeks her planned monitoring MRI which included her head found more brain tumours had developed that could not be treated. We were shocked and confused as throughout her treatment nobody had mentioned the possibility of brain mets and her MRI scans before this did not include head scans.
The rapid decline in her health and efforts to maintain her quality of life occupied our minds and time so did not ponder on what ifs to any great extent.
I recognise it is not helpful, and does nothing to ease my grief but I do wonder had this been a standard check throughout her treatment, would this have been found and treated earlier, would she have survived a little longer and would we been able to have enjoyed this summer together.
I raise this so that any other woman newly diagnosed with 2nd breast cancer can ask the question during consultation on treatment options.
Hi and a warm welcome to the online community
Can I offer my sincere condolences on the loss of your wife earlier this year. It must be very hard for you at the moment so thank you for taking the time to offer this advice and support to other people in this community who are currently dealing with secondary breast cancer.
You might yourself benefit from the support of the bereaved spouses and partners group where you can share your feelings with others who have lost their partners. If you'd like to join just click on the link I've created.
Sending a supportive ((hug))
hi
sorry to hear about your wife and I totally get the whole scan thing seems random, and that's being kind
I was told initially that I wouldn't need any further scans as my breast cancer was 'only' DCIS.
Then when the post surgery results showed Her2+++ they all started jumping up and down and I quickly had full body bone scan and a chest abdomen and pelvis CAT scan.
But never to my head.
why ?
Why since they were seriously suspicious of the Her2++ having sneakily spread around my body did they not include my head.
It still baffles me now, four years later, I've had discussions with the various doctors, and my own GP.
They say I would 'know' if I had brain mets because I'd have blinding headaches and feel sick.
So I specifically requested an extension of the CAT to the chest abdomen and pelvis to include the head and they scanned to my ears.
IT was like they were being super petty.
They told me that I'd need ultrasound along side the annual mammogram but each year they 'forget' to book it, so I have to chase.
They even said it's down to staff shortages. It's so different in other countries. The UK is particularly bad.
They say that discovering mets early has little bearing on the outcomes, which to me means you're gonna die anyway.
To be fair, in your situation it sounds like the cancer was very aggressive and at some point they decide there's not a lot more they can do.
For secondary breast cancer generally and Her2+++ specifically we were all campaigning hard to have Kadcyla approved and with the greatest irony in the world, for the poster girl for that campaign it simply didn't work for her.
If you feel like letting off a bit of steam over the whole should we /shouldn't we scan feel free, I'm very frustrated by it all.
hugs
Carolyn
xxxx
real life success stories to remind you that people do survive breast cancer
https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457
Dr Peter Harvey
https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
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