Leg lymphedema :(

Hey ladies,

Saw my consultant and CNS last week...they think I have got the beginnings of lymphedema :(

I'm feeling extremely angry and despondent about the whole thing! I know things could be a lot worse and I feel guilty for being so upset about something that in the grand scheme of possible outcomes is minor but I just want my old life back. I feel like I've gone right back to the denial stage!

After being on my feet at the shops yesterday my leg felt like it was on fire...swollen from my tummy, down into my groin and into my leg. I'm 8 weeks post op today and I'm desperate to get back to work to get some normality back but there's not a chance I can go back like this as I'm on my feet all day. 

They've referred me to the lymphedema clinic but it's a couple of months wait so I've found a private lady who does manual lymphatic drainage...booked in for Wednesday. I'm just feeling really confused about the whole thing...some people say it could still just be that my lymph is re-routing itself but others say once you've got it it's there for life?? I'm a slim, usually fit and active 30 year old...and I've still got the lymph nodes in my groin so technically I should be low risk I would assume?! 

Sorry for venting....I just feel so flat and weary.

I went swimming on Friday and felt exhausted after ten lengths and I'm trying to do a little yoga which I've read can help but I'm terrified I'm either doing too much or not enough. I just want to be me again :(

 Sarah xxx

Oh sweetie. Sorry to hear you're feeling like this. I would keep going with the gentle exercise like your yoga. It is very dispiriting, I'm being paranoid about my leg being swollen today. Give yourself time to recover, 8 weeks isn't all that long really. And it really is important to stay off work as long as you need to. Try to book yourself in some things to look forward to, afternoon tea or something with a colleague, that's what I'm planning to do. And as soon as I can drive, I'll pop into the office to see people and catch up on the gossip!

I'm so sorry to hear this - I was really hoping it would just settle down for you. :( I am also annoyed on your behalf that you have to wait so long!  I know for a fact that getting to lymphedema early is crucial in managing it, so there is no way you should have to wait so long to be seen.  Can you try and push for a cancellation appoitment perhaps?  If I was you i'd try and get the number of the lymphedema clinic and try to find out.  If you don't ask you don't get.  I did the same way back when I was referred for a colposcopy and was seen a couple of days later. 

On a more positive note, it's great news on your massage.  The lady who does mine was telling me about a woman she treats who had severe lymphedema which 'hung' over her trainers.  After MLD (manual lymphatic drainage) she no longer has that problem and is back to near normal size.  It really is amazing stuff.  

If they genuinely won't see you for a coupld of months as well, I believe you can have made to measure support stockings mades privately.  I think they are about £80.  You should not be in a position where you have to pay for them but if it's your only choice......

Hugs and prayers x

One more thing,  I would highly recommend joing this organisation. They have lots of info/support available and you can by DVD's showing you how to do massage etc. 



Hey girls :)

Thanks a million for your messages...it's great to know I've got some support out there :) Today has just been a poop day....very weepy and frustrated...I just dragged myself out for a swim and feel a little better!

I rang the MacMillan centre close to me as I saw that they do mindfulness meditation which I figured might help when I'm having one of these days. They said I need to register there so they'll call me back. I'm a bit undecided about it though....I feel that their resources should be spent on those that are still receiving treatment...those that still have cancer for want of a better phrase! I hate the thought that I might be blocking someone else getting help they need if they're in a worse situation than me. 

I'll call the clinic Nellie and see if they can get me a cancellation but hopefully this private appt might help in the mean time. I've had a look at the lymphedema website....it's really good...thanks :)

I hope you're both ok :) hugs xxx

I spoke to work today too just to keep them updated and it wasn't as bad as I'd feared! 

Hi sarah85

Sorry to hear that you might have lymphedema - I now have some first hand experience of this, but just to echo what others have said, this may simply be post-operative swelling which will settle down.

It took nearly two months for the Lymphedema clinic to see me and unfortunately in that time, my right leg swelled twice its normal size, though the left one seems a lot better and just about back to normal.  About three weeks ago, I acquired cellulitis and am on two lots of antibiotics four times a day.  I think the cellulitis is going now. 

I was initially given an exercise sheet to do simple lymphatic drainage and my legs were measured for compression stockings before the problem with right leg.  Now it's going to be bandaged for three weeks to try and get it down followed by day/night compression stocking for about six weeks.  The right leg looks horrible but i am confident it will get back to near normal.  The lymphedema clinic will also do MLD starting next week. 

I know sarah85 just how frustrated you must be feeling especially after your treatment finishing and being given the all clear.  I think with MLD and simple lymphatic drainage exercises for you to do at home plus regular moisturising will help a great deal.  You may be given compression stockings but they don't feel too bad and don't look too bad under trousers. 

Just when you think you have gotten through the worst .....!

Although twice your age, like you I just want to get back to swimming, do some yoga or Tai Chi whatever, go on holiday abroad, get my legs waxed ......!!  In other words, just get back to normality. 

One year now since my diagnosis (Stage 2A1 cc) and back at work part-time at present as hospital social worker.

Good luck sarah85 - I have every confidence that if this is lymphedema, you will soon get it under control - remember my left leg and foot are really just about back to normal.

Good Luck :) xx

Hi silverdog.....thanks for your message :)

I'm sorry to hear you're having a time of it too! It's really just too much for me to cope with at the moment. I think it's the fact that I got the all clear and was obviously over the moon and knew that hopefully after some more recovery I could have my life back! I'm usually such an active person and the thought that I'm going to be dictated to by my legs about what I can and can't do is just awful. 

I bought myself a cross stitch kit to try for the first time to take my mind off things and after sitting here with my legs up and my stockings on for a couple of hours I suddenly noticed my legs burning and now they've both bloody swollen up. I can't exercise the way I used to and equally I can't sit still... I just feel horrendous.

I know it sounds pathetic but I'm devastated about how it looks....I've usually got naturally skinny legs and they just look podgy now and all my hips have swollen too...I just feel disgusting. i just sobbed and sobbed last night and my partner told me that it doesn't matter to him but I don't feel attractive any more.

i just don't know what to do with myself....now I'm crying again and I wanted to not look like shit when he gets home...

How do you cope with this??? 


P.s I work as a Physio at a hospital and know full well just how busy you social workers are!! Do your legs cope during the day??

Hi sarah85

Sorry for delay in responding but just home from work.

Am so so sorry to hear how sad and upset you are feeling - such a blow after getting over the cancer.  It seems disgusting to you, but am hundred per cent sure that your husband, family and friends don't notice it as much as you.  I know the feeling having had skinny (quite nice legs being tall) myself and suddenly one is a bit bigger and the other is now twice the size - talk about thunderthighs! 

Best to wear some nice long skirts or fashionable loose trousers - there are some decent flat shoes out there, but I have had to succomb to velcro ones which I hate.  Horrible not to be able to wear high heels though.

Do talk to your husband about way you feel and also your cancer nurse if you still have one.  Lymphedema UK would have a listening ear - also go into Polly Nolan's web-site inputting lymphedema claiming she cured her own lymphedema to the surprise of her doctors - makes interesting reading with lots of great tips. 

Do go and treat yourself to a facial or massage (I ask them to leave the legs at present) and get your hair done. 

Hubby needs to spoil you like mad - treat you to a meal, cinema, weekend away and most importantly loads of cuddles!  My partner sometimes does this, but generally my dog provides me with most of my cuddles these days.  Ha Ha!!

If things really don't improve your GP could put you on temporary anti-depressants/refer for counselling.  BUT I think this is a blip and as I said before you need to give your body time to heal after your surgery. 

Good Luck with everything and don't be too hard on yourself.





Hey Janis.....thanks for your reply :) 

the logical part of my head says it barely noticeable and that it's not the end of the world but every other bit of it is screaming that it's had enough....I'm sure it'll get easier with time and more understanding once I've seen the clinic!

I paid for MLD privately today and my leg hasn't been as sore this evening as it usually is late in the day which I'm pleased with....I'm going to go twice weekly for a few weeks to see if I can kick start my other nodes into action!!

Thanks for the Polly Nolan info....I'll go have a gander now :) 

my partner is being great....we went out for tea tonight which was lovely and I bought myself some new make up today :) I'm just gonna have to take one step at a time and see what happens..... 

thank you so much for taking the time to write to me....it means a lot


Just found the website you were referring too Janis....just in case anyone else wants a read its Polly Noble not Nolan :) but it's a great site...lots of stuff on there about looking after yourself :)

stories are very similar. Hope all is well. Do u still have swelling? My lymphedema is so bad in my left leg and groin.

stories are very similar. Hope all is well. Do u still have swelling? My lymphedema is so bad in my left leg and groin.