Pregnancy and lyphoedema

Hello

I was hoping for some advice, as I find my lyphoedema nurses - although lovely - kind of difficult to get information out of…

I am very lucky in that I’m 34 weeks pregnant after being diagnosed with breast cancer almost 5 years ago at the age of 28. I was diagnosed with very mild lympoedema about a year after that. I had extensive node removal - cancer was in 14 /25 so apparently it was always something that was more likely than not. It’s never bothered me. I wear the sleeve at work as I find typing can make my arm heavy. But I’ve been skiing, on hot holidays, trekking in Borneo, Walked end of pennine way, play piano etc etc and have always found it easy enough to manage.

They moved me onto phone appointments only and told me I didn’t really need to wear the sleeve unless was using the arm. Until pregnancy! The last few weeks my fingers are v swollen (on both hands and my feet too lovely water retention!)

but, the nurse couldn’t tell me whether it was now inevitable that lympho would get worse, or never return to how it was - will it always progress through the stages and just get worse and worse or can we keep it mild with the right care? Obv for me until the baby is out I am going to keep retaining fluid which will keep my swelling up!

Any advice greatly appreciated - my fingers are also quite numb

Liz x

Hello lizalou

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Best wishes
June, moderator

Hi Liz,

I am not an expert but I think this is pregnancy related and not just lymphoedema. Therefore it is probably best if you contact your midwife and ask her for some advice.

I am assuming that your visits to the midwifery team are now increasing with the last few weeks of pregnancy approaching and that they test your urine for protein, check your blood pressure to ensure it is not high and also check on oedema in limbs including fingers and toes to exclude pre-eclampsia. Therefore it is probably sensible to speak to them as this does not need to become an issue for you and if the teams were really sensible they would even talk to one another!!!

Please let us know how you get on.

Kind regards,
Maggie

Hi Liz

Congratulations! I’m in a similar lucky position and had my baby 6 months ago after two lots of chemo in 2001 and 2006. Developed lymphoedema in my left arm and hand after the first diagnosis in 2001.

I get away with just wearing a glove and was very surprised that it didn’t get worse during pregnancy. Like you I have lovely lymphoedema nurses, but they said they’d like to keep a check on me during my pregnancy then I got no appointments through until I chased for one at the end of my pregnancy! My lymphoedema was really bad when I came out of hospital, I think a large part of that because it was one of the few periods of really hot weather we had in the summer. I also threw one of my gloves out with a nappy which didn’t help!

I have found (hopefully) it hasn’t got much worse with lugging a heavy baby around which was my main worry. I realised two months in that I was sitting on the wrong side of the sofa to feed my little one so wasn’t actually supporting my bad arm (DOH!) so it’s been much better since then, and I wear a latex glove over my lymphoedema one when changing nappies so I don’t have to take it off and on. I have a check up at the lymphoedema clinic on Friday so it will be interesting to see if my percentages have gone up! My lymph nurse said that my strength would improve as my baby got bigger and heavier and I think that’s true, the worse thing is the car seat, it’s impossible not to hook it over my bad arm like a shopping basket!

Wishing you the very best of luck with the birth.

Helen x

PS I got a wristband from the LSN to wear in hospital just in case I was a bit ‘out of it’ and anyone not in the know tried to do blood pressure or take blood!

wow, you 2, congratulations!
the lymphoedema’ gang’s going to have it’s very own babies (as well as its very own intrepid explorer, liz)
i know it’s not the same, but i’m blowing up a bit with steroids at the moment & have been assured the ld will go back to ‘what’s normal for me’ when i stop taking them
can’t knit any more, but have a cyber bottle of calpol each!!

Thanks v much for replies - I went for MLD which I found lovely and relaxing…perhaps that was just the lying down! Every time I lie down am ready to nod off at the moment. She was really positive and said that basically your lymph system has more capacity than it needs so even when severely damaged it can still cope to a certain degree and the objective of sleeves etc is to keep it within the limits it can cope with so it can get better rather than worse over time. I feel a bit more relaxed about it now. And as others have said, I’m not sure how much of this is lympho and how much is pregnancy - the MLD lady didn’t think it was that bad at all considering how pregnant i am so fingers crossed (or perhaps not with this glove on but you get the picture!!)

L xx

Hi Liz

Just an update - I had my check up last week and even with all the lifting of baby/car seat/travel cot blah blah blah my arm had only gone up one percent which I was totally amazed by! I think my nurse was right about the muscles building up gradually.

I need to be more rigorous with my exercises but needless to say have forgotten to do them today!

Helen x

Thanks so much for the update Helen - good luck with all that lifting! I know what you mean about exercises…I always have good intentions and then forget, and the baby isn’t even here yet so no excuse! x