I finished my treatment December 20th, and was just starting to feel like myself again when my legs started feeling like they weighed 80 lbs each. Went to see my radiation oncologist, and he thinks I have lymphedema. I'll be seeing a lymphedema specialist soone.
I am pretty upset with this news and have started going through the "what ifs". I read that there are some presurgery tests doctors can run before they operate or give you radiation to your pelvis area that tests the lymph nodes your body is using so the doctors won't take those lymph nodes out and the radiologist can set the radiation beams to not hit those lymph nodes. Has anyone had this done? I'm kicking myself that I did not investigate anything before I started treatment.
Also, does anyone have any tips for living with lymphedema? I saw an earlier post where women strongly suggested using compression tights. I guess those would be okay in the winter, but my summers get pretty hot. Not sure what to do then!
Im so sorry doglover. I was hoping you would be considered low risk as you love your exercise and they abandoned your surgery. Lots more of the surgical patients face this rather than chemoradiation but if they are targeting your lymph nodes with chemoradiation you can sometimes still be affected. I think they make through Occupational therapy compression tights for you individually and physiotherapy can give you advice aswell as the specialist. I'm so sorry you are facing this.
Hi dog lover. I was diagnosed with lymphoedema in 2015 after a flight abroad. Didn't realise I had it, although was told I was high risk following surgery and chemo rads. I was gutted at first, but have learned to live and cope with it. At the specialist Lymphodoema clinic, they measure your legs to see how much fluid you are holding. Over the past two years, mine has reduced from moderate to negligible. I was taught how to do manual lymphatic drainage, which I try to do daily, as well as wearing compression stockings. I had the choice of that or tights, which I found far too hot. I also wear compression shorts as an alternative to the stockings and alternate each day. This regime seems to keep me ok. I try to keep my weight down, and exercise, walking and cycling. I have spent time in Turkey in the summer months and still wear stockings and shorts, yes a bit hot, but preferable to enlarged legs. Good luck with it. PM me if you need more help.
