Radiation for breast cancer with Ehlers Danlos (Hypermobile/ Type 3)

@susie757, welcome. I'm tagging a few members of the Breast Cancer group who also have Ehlers Danlos syndrome (EDS), like @cdammen @colely @krisrwalters and @leculdesac. They may have some first hand experience to share about breast cancer treatments and EDS.

Can your doctor, who helps you with management of EDS, communicate with your cancer team?

I do not have a doctor who helps me with EDS. I was diagnosed in the Twin Cities and the doctor left that practice a month later. I am on a year-long wait list to be seen at Mayo. I am getting the EDS genetics tests because I have neurological and autonomic problems being worked up at Mayo. I have not even thought about the intersection of EDS and cancer. In fact, cancer has been almost a secondary priority for me given everything else that is happening.

@colleenyoung I currently don't have a doctor who could do this for me; I've been managing symptoms with what I learned when I was diagnosed years ago.

Thanks for tagging people. I'd love to hear positive experiences and any tips people might have as I begin radiation tomorrow morning!

@susie757 and @cdammen, if you're not already, you may wish to follow the EDS blog by Mayo Clinic experts:
- Ehlers-Danlos Syndrome Blog https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/tab/newsfeed/

The Ehlers-Danlos Society provides a service to help find EDS specialists See the “Healthcare Professionals Directory” here: https://www.ehlers-danlos.com/healthcare-professionals-directory/

Mayo Clinic's EDS clinic is listed there, along with many others across the US listed by state. Providers from other countries from around the world are also included.

Mayo Clinic accepts EDS patients at all 3 campus locations in AZ, FL and MN. People can self-refer for concerns related to EDS and/or hypermobility. A physician referral is not required. Geneticists are also available at all locations although appointments may be limited for a genetics consult in AZ and MN at this time.

You can get information at marfan.org/ask. EDS is a closely related syndrome, so it is an included syndrome. If your radiation is on your left breast there certainly is reason for concern. Radiation affects the heart valves and hEDS causes heart valve regurgitation. I didn't know that I had the condition of tricuspid valve regurgitation until I had an ultrasound to check for heart-related hEDS problems. So radiation could further damage your heart valves. My advice to anyone that will undergo chemotherapy or radiation therapy is to Google their particular health problems and radiation therapy or chemotherapy and see if there might be complications. My oncologist did not seem concerned when I HAD to bring it up to her. She said that she would deal with each health problem as it occurred.