BCNA Online Network
Re: Heartbroken, but unbroken
Happy to help
. As your name implies, we're with you. I'm in medical admin when I'm in paid work.
Ask your breast surgeon to refer you to the public system for radiation therapy. They are the overall coordinators of your care. Some people are able to negotiate with the health providers to get an acceptable price. You could check with your wife's breast care nurse, she'd know the ropes locally.
might be able to chip in with some wisdom if she's around.
How is your wife doing today
? K xox
Re: Post op pain
I had anxillery clearance and mastectomy. Discomfort for six months until my osteo worked on it. They have your body in a very unnatural position during surgery and it takes awhile for it to recover. My BC nurse was very dismissive of it when I told her so I buried my head in the sand until I couldn’t take it anymore. Get it looked at now as it will save you the unnecessary pain.
Re: Heartbroken, but unbroken
Talk to your wife's surgeon as he/she co-ordinates the treating team. Say that you would prefer to go public for rads and ask for referral to someone in that system - if your surgeon isn't keen, ask why. (I didn't know to ask about public/private but my surgeon was very aware of my financial circumstances and brought it up with me.) Your wife will have a long term relationship with her surgeon and oncologist. Unless tnbc is very different to other bc, she is likely to see her radiation oncologist 2 or 3 times in total...ever.
I'm not familiar with Brisbane's facilities - others may be able to comment - but I haven't heard that private is any better with regard to equipment or treatment. And from what I'm aware, there's just as much appointment shuffling and waiting in both systems but I guess that could be different in different places.
I think you said that you have a friend in a local radiotherapy dept - if you feel you can without prejudice, then ask that person what they think.
Re: 27 year old lobular carcinoma
It's such a hard one. You want so much to finish the prescribed course, but be aware that peripheral neuropathy can continue to progress for some time after completing chemo. For some, it then goes completely, for others, there is no resolution and great effect on life. Many others will fall somewhere in between.
I had a different taxane, & not does dense. I considered my pn fairly mild. I start chemo just on 4 years ago. Whilst I would say i have almost normal sensation in my finger tips, I can have a firm grasp on a item and then it's gone. Luckily it hasn't been anything breakable to date. My 2 little toes on each foot are still quite numb on the underside, so I tend to be careful walking but it's not a major issue.
You, and your team have to weigh up the risk v benefit ratio of continuing or stopping. As always, write your questions and concerns and take them to your appointment
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