Lymphodema

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Hi I’m having my WLE and SLNB next Thursday and Friday. When I spoke to my plastic surgeon I asked about the risk of lymphodema and she said it’s very low. My SLNB will be in my groin.
I have just had a pack in the post all about lymphodema and how I’m now at risk and how to prevent it. I know I’m at a low ebb at the moment but it’s really upset me.
My job is a school catering manager cuts and burns come with the job! I love gardening. Thankfully I am very active I walk miles am not overweight but I’m really concerned now. Oh and plus insects treat me as an all day buffet in the summer. Even in bed at night they come and feast!

im really fed up now. I can accept changing my life by sitting in the shade and covering up even though I’m going to be sweating buckets but this is something else again.

ok of course I’m praying I get a negative result and hopefully moving on from all this. But now is this another list of stuff I can’t do? How on earth am I going to work at a job I love? And on a selfish basis how can I wear my skinny jeans in the future? I’m sat here so so fed up. I hate this.Big time.

So my question is how do you all deal with this if you’ve had a SLNB and has it affected you. I am ready to deal with being out of action for a few weeks but is this going to be my life now? Thanks for listening x

Melven over 2 years ago

Hello! I have just had my first appointment with a lymphoedema specialist following cellulitis after my slnb. They have been great and, whilst I have been told that it won’t ever go away, it is totally manageable. I have a glove and sleeve now and things are much improved . Hope all works out for you xxx

JannAA over 2 years ago in reply to Melven

Thank you. Xxxx

Alottment lover over 2 years ago

Hi Jann22, it's natural to be concerned about lymphoedema before you have an SLNB.

I had my SLNB in my right axilla as my primary mole was on the upper right arm. My surgeon took out 3 lymph nodes only, the sentinel node plus one either side. As we have many lymph nodes in our bodies taking 3 out doesn't mean I'll get lymphoedema. So the fact that you're having an SLNB and not a full node clearance in your groin should ensure the risk of lymphoedema is small.

The decision by oncologists/surgeons to remove all nodes in one area has been shown by research to not affect the outcome of staging or recurrence. There are quite a few people on here who've been through your type of op recently and hopefully they'll pick your thread up and support you. I'm pretty sure you can carry on as normal once all is healed x

JannAA over 2 years ago in reply to Alottment lover

Hi. Thank you for your reply. I hope so. I know they were only trying to help by sending out this leaflet but it was so almost doom and gloom laden about lymphodema and cellulitis and how there was a case of someone who couldn’t walk because of it and sat and put 3 stone on in weight it wasn’t helpful at all! Xx

Alottment lover over 2 years ago in reply to JannAA

JannAA,. What an awful leaflet. I would tell them about the effect it's had on you and hopefully they can redo it. They can organise a new one easily. I know it's hard to find positives when we've been diagnosed with this awful disease but we do need all the hope we can find. The NHS system is well aware of lymphoedema and a specialist lymphoedema nurse can be found. I'm sure Macmillan have up to date info on the risks. I would ask your surgeon how many nodes they are removing. Take care hon x

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