Reply To: Dealing with recourrence and lack of treatments
I am so sorry to hear about your mother’s passing after such an awful ordeal. Thank you for letting us know what has been happening. This disease is difficult to manage with even the best specialists and treatments at hand, but it is even more frustrating when the health care options aren’t open to patients – in your mother’s case because of restrictions in the NHS. It seemed to be especially difficult to work outside of the public health system to get your mom treatment that might have controlled the tumors. As you noted, it is different in the US, but we still run into problems when we try to utilize specialists and treatments outside of our insurance plans. Most of this stems from the fact that GYN carcinosarcoma is such a rare disease and rare diseases get insufficient resources.
I am so moved by your offer to help us make this information more accessible to Spanish-speaking patients and families. I will let our Board of Directors (my fellow volunteers!) know and get back to you by email. I can envision having our content/articles available in Spanish as pdfs or perhaps as separate webpages. Thank you so much for your suggestion and generous offer of support.
Finally, your point on the quietness of the Forum is well taken. We’ve noticed it also. I believe it is because we no longer push out notifications to all participants when there is a new Forum post. We halted this practice because of complaints of unwanted email, but we need to reassess this. I think it would help us build this important dialogue. Our founder, Diane Redington, strongly believed that the Forum was a critical part of our mission, and we would like to strengthen it so that it provides consistent support for our community members.
My deepest condolences,
Kathy Wilt (Medical Advisory Committee Chair, The GCS Project Board of Directors)