From discussions in the Facebook group, it is clear that those of us who have had a BOT diagnosis have some important experiences and insights about engagement with healthcare providers and the healthcare system when undergoing a diagnosis, treatment and monitoring for BOT. These insights would be very helpful to others including BOT-ladies, their families and friends, advocates and healthcare providers.
To this end, please do share your suggestions, this might include questions that BOT-ladies should be asking to their healthcare providers, and perhaps other insight into ways to deal with diagnosis, treatment, follow up… What would you advise a newly diagnosed BOT-lady ask? What advice would you share about your own experiences? What should BOT-ladies ask their healthcare providers? What support should we ask from our friends and families?
Some of this will link to fine-tuning and adding to the “FAQs about BOTs” fact sheet, and some into developing a patient/healthcare user guide about BOTs.
I will also get some input from healthcare providers about what they think we should be asking too.
I look forward to hearing from you. Please consider joining the Facebook group, or email:borderline.ovarian.tumours@gmail.com
Some broad ideas… please add and help to be more specific…….
– What questions should I ask my healthcare team about my diagnosis?
– What should I take into hospital with me if I’m spending a few days/nights?
– Who should I ask what?
– Where can I get support?
– What are my treatment options? Why are these the best options?
– What is my follow-up/monitoring plan?
– What if I want to “maintain my fertility”?
– What advice for getting fit pre- and post-surgery?
– What tips for assisting my scar to heal?
– What happens if I need HRT?
I look forward to hearing from you. Please consider joining the Facebook group, or email:borderline.ovarian.tumours@gmail.com
jozi-ovari 
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