Hi, I was diagnosed last Sept with Stage IV BC
I've since decided to 'go flat' and have what is officially called Aesthetic Flat Closure and a double masectomy.
Problem:
* The amount and way information is given to us as patients is unacceptable. I want someone to tell me all of the gritty details, all of the
incision options and procedure that is best for my body type, and both the best and worst case scenario depending upon where they find
the tumor ie. if it is against or into my chest wall
* I can't seem to find a list of surgeons anywhere that discuss their training in flat closure, or if they have training as an oncobreast surgeon.
Finding a doctor should not be such a treacherous difficult undertaking. It is frankly easier to find a rated car mechanic.
* Women have a right to get an idea of what they might look like after the masectomy. We are not dead yet and deserve to be treated like
human beings with a future, and who have the right to have feelings and preferences and opinions. We don't just have to throw up our hands
and put our lives into a surgeons hands without input like we are even lucky to have someone attend to us. Frankly dogs are treated better
* We deserve to be directed to GROUP INFORMATION / LEARNING SESSIONS. maybe with content graded by difficulty progression, like university
courses, so that the women who want to become empowered and knowledgable, have the option. It is a totally helpless feeling being isolated and
not given technical info when we want to know it.
* We women deserve a forum of doctors on call ready to answer any technical questions ie. via chat, that we ask... it should be anonymous and doctors
should be willing to give their opinion independant of the opinion of the doctor assigned to the patient. There is no right to a hierarchy of authority over
us patients! We are not children and we deserve open answers to the questions we ask, especially if we phrase them in a generic way.
To summarize,
It has been a year. I am at the end of my rope. I've been to all of the websites including notputtingonashirt, and flatfriendsuk (which seems defunct), and I cannot seem to locate
a surgeon that can help me. THIS IS NOT OK!!!
Furthermore, possibly on another topic, there are new tech developments for cancer that include luminescent dye that lights up cancer cells DURING THE OPERATION!!!!
Where is this being discussed? Do we have a forum or topic to discuss latest tech? I will start one! I am not on Facebook nor intend to be, though I am on Telegram so please
let me know if you want a more real time chat about these things!!!
Thanks for your replies. PS. I do not want replies telling me WHY I CANT BE HELPED etc. I just want info I need, if available.
