Delayed Lympedema

nadinepouw

Dear all,

My mum had her lymphnodes removed just after her mastectomy when it turned out 1 node was positive. She slight lymphedema just after surgery which recovered completely after physiotherapy.

However, now, almost 3 years after surgery and more than 2 years after chemo, she suddenly had severe lymphedema in the arm on the BC side. She had no infection, did not bruise her arm or whatsoever. The surgeon scared the hell out of her by implying it might be related to metastases, so she got a PET-CT. Thank god all was ok.

Now I have never heard of lymphedema being a sign of metastasis, is this something one of you have heard before? And what could be the cause of the sudden lymphedema now?

Thanks a lot in advance for any answers.

Kind regards,

Nadine

chrissyb

Hi Nadine, I have not heard of lymphodema being a sign of mets either.  The thing with lymphodema is that it can come at anytime after the nodes have been taken.  I have mild lymphodema at the moment and that only started a few months ago and I am seven and a half years from diagnosis.  I hope your mom can get it under control again.

Love n hugs.  Chrissy

Binney4

Nadine, welcome,

I'm so sorry for that awful scare, but really glad the scans turned out so well. Whew! Waiting for those results really ratchets up the stress!

It sounds like your mum's doctor was being very careful and caring and ruling out all the possibilities before assuming it was treatment-related lymphedema. Other causes for sudden unexplained swelling would be infection, blood clot, and mets. So it's reassuring to know it's "just" lymphedema and not something even scarier.

Sadly enough, lymphedema can be caused by a tumor blocking the lymph system in the area of the axilla. Some of our Stage IV sisters here are dealing with that. MLD can be done as long as it's not done directly over the tumor, but it's often not very effective in that situation. Dr. Andrea Cheville, who is one of our lymphedema research heroes, has found that MLD in that situation is still helpful, because it relieves the heaviness and any associated pain. Some women find night garments especially helpful, because they're a softer kind of compression and they support the extra weight and volume, giving some relief.

As for the delay, we've had lots of women who developed lymphedema years after treatment -- several 10-15 years later and one 26 years later. Often they can't think of anything that could have triggered it. A nasty surprise for sure.

I hope your mum is now getting great care from a well-trained lymphedema therapist and feeling some relief. Let us know how we can help!

Be well,
Binney

nadinepouw

Dear Chrissyb and Binny4,

Thank you both so much for your quick reply and kind words. Indeed my mum was VERY scared when the sugeon hinted metastases as possible cause. Actually she was so scared, she didn't tell me about the whole thing until after she'd received the PET-CT results and knew all is well.

I had never heared of a tumor/metastases causing LE, so thank god the physician was well aware and was careful. And thank goodness my mums sportsinstructor advised her to see the surgeon. Certainly seems like my mum is surrounded by some very capable people (or has an angel on her shoulder).

My mum has started MLD immediately but the (LE) therapist mentioned it is hard to get the fluid passing behind the (breast)implant. They will wrap her arm coming Wednesday to see whether that will help.

How very sad to hear that some women get the nasty LE after 10-15 or even 26 years. As if you/they haven't been through enough....

Take care, and thanks again for your thoughtfull reaction.

Nadine