Be your own advocate! You cannot always rely on medical specialists.

Chris1952
Occasional Visitor

Be your own advocate! You cannot always rely on medical specialists.

I was 69 years old when I was diagnosed with breast cancer in November 2021. I was very fortunate to only need a lumpectomy, sentinel node biopsy and radiation treatment. I was happy with the specialists and nursing staff who cared for me, but feeling quite vulnerable and not questioning any decisions about my treatment.  I imagine I would have been evaluated as a very low risk case by the multidisciplinary team.

Now in 2023 I've been diagnosed with lymphodema in my arm (same side as surgery) and  osteoporosis in my lower back.

I'll never know if the osteoporosis was present before treatment because I've never had a bone density scan. I do know that nobody on either side of my family has never had a broken hip, knee, or back problems.

Had I known that certain medication and treatment could contribute to the development of osteoporosis I would have asked for a bone scan so there would have been a baseline measurement to use as a tool to assess the effects of treatment. 

What annoys me most is that with a multidisciplinary team, nobody thought a woman going on 70 years should have scan before treatment was commenced and to inform the most suitable drug options for my treatment.

As for the lyphodema there is a simple mechanical test carried out by a specialist OT that can assess the risk for developing the condition post surgery.

Such, simple basic steps that should be part of the multidisciplinary team approach that we are brainwashed into believing as gold standard treatment practice.

So be strong, be informed and be your own advocate because you can't assume if you're a low risk patient that attention to detail will be the same as for those with a difficult prognosis.

 

 

 

 

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