Lymphedema - Scans??

fd1

Since a year after my mastectomy surgery in 2012, I have had minor lymphedema in my hand. It started after a flight to Europe. In June 2020, I had a baby and my whole body became swollen after the birth. The fluid never left the arm with lymphedema. I have gone through CDT and have a glove/sleeve but I was on the waiting list for the lymphedema clinic to see about possible surgical options. I went to the clinic today and the doctor who assessed me referred me for scans - she mentioned to check for axillary recurrence. The referral says "due to worsening lymphedema, reassess". She said this is the standard procedure before I can be sent to the surgeon and not based on any concern they have, but it made my anxiety go through the roof. I can't stop crying. Can somebody tell me if they underwent any scans?

MinusTwo

fd - I think it's wonderful that they are doing "scans" to access the problem. What kind of scans? I'm just wondering what might see LE the best.

fd1

it's not to assess the lymphedema but to ensure the swelling is not a symptom of a recurrence in the armpit area. She said that it's part of their normal procedure when swelling is new or worsening but it's terrifying me. I have never heard of this before! I didn't even know lymphedema could be a symptom of a recurrence.

Binney4

fd1, please don't be afraid. Yes, lymphedema can occur with blockage of lymph vessels from tumor growth, but this is clearly not what they're expecting to find. Good for them for doing scans--it's the most caring and knowledgeable way to proceed. The reason for this is that obviously a cancer recurrence is a more serious situation than a lymphedema diagnosis, so they've established a process that puts their priorities in order. If they were actually expecting this is a problem in your case they wouldn't have gone to so much effort to reassure you otherwise. My guess is that in the end you'll be glad to know all's clear and you can deal with the lymphedema without further concern. You might also be glad to know that, unfortunately, this degree of "smarts" about lymphedema is not available everywhere--it sounds like you're in very good hands!

Do let us know what you discover. Gentle hugs--and maybe some good chocolate while you wait it out!
Binney

fd1

Thank you so much for your kind reply. You've brought my anxiety down a notch. I know it's not rational to be upset because, as you said, they wouldn't have reassured me that it was standard if it wasn't. I guess it was just a shock to find out that this *could* be something more nefarious or that it would be common enough to warrant scans. I have never heard of this being done before and I have an irrational distrust of doctors. I haven't had scans since I was first diagnosed, almost 10 years ago and it was, for me, the worst part of the diagnosis by far. The waiting, the wondering, the moments leading up to the results appointment... I could throw up just thinking about it.

Binney4

I sure do hear you on that! Waiting is the worst. No amount of rational thinking can take away that kind of tension completely, but some things do help, if you can bring yourself to do them. Get busy with something that takes some concentration; stay physically active; do something with friends; reach out to someone who needs you. I sure hope you won't have to wait long for the scans and results. Please keep us posted, and tell us how we can help.

It'll be good!
Binney