- Carney Complex
- Interviews
Lizbouma's interview
How did all start?
When I was 19 and in college they found >50 tumors in both breasts. One of them was the size of a golf ball and I had it removed. I’ve had tumors tracked annually in my thyroid and ovaries ever since I can remember. My doctors have been baffled by my hormone test results for years. I’ve had a cyclical cycle that continue to get worse year over year.
Do you already have a diagnosis? How long did it take you to get it?
I brought it to my doctors in October of 2021, I got the results from the testing on 12/27/2021 and finally people started listening.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I don’t really understand this question but I’ll give it a shot. My breast tumors were painful and the doctor I was working with put me on Tamoxifen which reduced the swelling. I took it for the maximum recommended time-5 years. After that ran out, I had a bilateral mastectomy with reconstruction-I was 25.
What has been the most useful thing for you so far?
That regardless of how hard it is, I need to be my own advocate and trust what I am feeling. My doctors sent me down different paths and ignores test results because they couldn’t explain them-it’s frustrating now, I needed to ask more questions and I didn’t because I trusted them. Trust but verify.
What have been your biggest difficulties?
There’s very little research about my condition. My local doctors told me they didn’t have the communication skills or expertise to help me which left me scrambling to find one of three doctors in the world who have experience. Things I have are not documented in research even through they exist in others who have my condition. A lot of the research being done now is to promote medication to help people lose weight, which they only know about through the data of people in the community. Nothing that I am aware of, has been done to actually come up with real medications to support those that are suffering from this illness, they just took one piece of what they learned and are capitalizing on it. I understand parts of it can help a much broader audience but that being said, I expect more and I know more could be done.
How has your social and family environment reacted? Have your social or family relationships changed?
Loaded question. My social environment is limited to people that I am close and comfortable with. My work environment is difficult, I’m still trying to balance hearing that I have 90 year old bones and lesions on my pelvis and a day later getting emails that people forgot their password or have a new idea-it’s a bit of a balancing act to stay empathetic right now given how new this is for me.
My family has come a long way. My mom use to tell me to listen to my doctors and let them do their job, this has changed her mind. They support me doing whatever I need to do. I decided to stay with them and now they are seeing the terrible cyclical experience I have, I think it provides context and they are much more aligned with me when I visit doctors.
What things have you stopped doing?
Traveling, going out alone, searching for new jobs, trying to make new friends outside of those in my community. I’m no longer holding my tongue when I have questions or holding back when I have something to say regardless of the context or situation. I can’t hold on to any stress right now.
I have stopped hiding what I need from people because I am afraid it’s too much to ask-I’m just asking because I need support.
What do you think about the future?
Ahh, I don’t know. I’m hopeful.
