Is this normal? So many questions

[sad_watermelon]

At the age of 8 I got cancer surgery on my leg, on the soft tissues. The operation caused the interruption of 3 lymph nodes. At the time, me and my parents didn't know about lymphoedema. And I was great! Until at the age of 13 I joined a tennis class and my leg started swallowing. I was then diagnosed with lymphoedema. Now I am 19 and I'm wondering if lymphoedema can come just like that 5 years later. I am wearing compression socks and they keep the leg from getting worse, but I still don't understand how it can come after 5 years? Also, will it get worst with age even if I wear my socks? Is this going to affect my life in a negative way? I always wanted to be an actress, well, I know that now I won't be because of it, so I'll go for directing, but I am very scared. I don't want it to get worse. Please, if anyone has answers, it would mean a lot.

[Perido]

Having lymph nodes 'interrupted' means you have a lifetime risk for lymphoedema thereafter. Your lymph system, 'south' of the affected lymph nodes, had probably been struggling for sometime albeit without symptoms - sometimes referred to as stage 0 lymphoedema. Even a small trauma, such as increased or more intense activity due to playing tennis, can lead to swelling you've recently experienced.

Lymphoedema is progressive but can be more or less stabilised by adhering to the so called 'four cornerstones' of lymphoedema management.

1. Wearing compression every day. It's important compression fits well and it should be prescribed by a lymphoedema specialist e.g. at a lymphoedema clinic if you're in the UK.

2. Skin care: daily moisturising to enable skin integrity thereby reducing the risk of cellulitis.

3. Healthy lifestyle: regular moderate exercise, healthy diet and maintain a healthy body weight.

4. Manual lymphatic drainage (MLD) massage.

Sorry if the above seems overwhelming. It all takes a bit of getting used to but after a while it becomes second nature.

The Lymphoedema Support Network (LSN) self management videos are very helpful. I can't seem to post the link; google on 'lsn management video' to find them.

[sad_watermelon in reply to Perido]

Thanks a lot! I do all of this, except the exercising because on the same leg I have a muscle removed (again because of cancer) so my tight muscle is removed and all the exercises that they prescribed to me include lifting the left leg alone which is very difficult for me and even painful. If I understand you correctly, my leg won't get worst with age if I continue doing this?

[Perido in reply to sad_watermelon]

I don't think it's possible to say for sure whether or not your lymphoedema will get worse. Everyone's different and I wrote 'more or less stabilised' advisedly in my reply above.

My lymphoedema is also as a result of cancer (gynae) treatment, and swelling appeared within days of my final radiotherapy session in 2017. It progressed fairly rapidly affecting my entire right leg, foot within 18 months. Nevertheless, by 'upping my game' everytime I noticed a change, I've managed to control the swelling fairly well and it's barely noticeable to the onlooker even when wearing a skimpy outfit.

Upping my game has included changing from an off the shelf circular knit stocking to a custom made flat knit one, wearing my stocking every day from when I get up to when I go to bed whereas I used to take it off in the evening, performing SLD every day rather than just occasionally, elevating my lymphie leg whenever possible rather than now and then. I also make sure I moisturise the affected area every day and treat any bites, wounds etc immediately so as to prevent cellulitis which, apart from being a nasty infection, can make lymphoedema get worse. My swelling has been fairly stable since 2021 so hopefully I'm doing enough, albeit a lymphoscintigraphy scan in 2019 showed impaired lymph function in my apparently 'normal' leg: I sometimes apply kinesiology taping and perform extra SLD if I get any suspicious sensations in that leg.

Whilst it's important not to get complacent I note your swelling appeared much later than mine, following cancer treatment, and sounds like it's easier to control so maybe your lymph system is less damaged than mine?

I can very much empathise with your fear of your lymhoedema getting worse and I got very upset each time I noticed mine progressing. For me it helps to try and replace that fear with striving to improve how I manage my swelling; it's good that there's a good amount of reliable information published about the best ways of doing this:

lymphoedema.org

lymphoedemaunited.com

[HelenWi]

I had lymph nodes removed with my breast lumpectomy in 2009 and developed lymphedema in my arm in 2023. I was totally surprised. I was told by the PT that lymphedema can get triggered at such a late point but I couldn’t figure out what caused it.

I think the there is a possibility for improving lymph flow surgically... I think that large cancer centers have surgeons who specialize in that so you might want to research that. I have read that there are better and better technologies to perform such surgeries.

In the meantime, there are two excellent lymphedema websites for exercises, yoga and all sorts of other info which are available on YouTube. I love them both but particularly this one :

youtube.com/@balancewithbab...

Here is the other one :

cancerrehabpt.com/

I hope that they can make some progress in this area soon.

Best wishes!

Helen

[sleeviejeebies in reply to HelenWi]

Those are my two favourites, too, Helen!

[sleeviejeebies]

Hello sad_watermelon,I'm sorry you've experienced both this and cancer so young. That's lots of good advice from Perido, and it sounds like you're already doing most of it. I didn't to begin with and things got out of hand, but now I do a lot to try to keep it under control and things have been slowly improving. The only thing I'd add is to try not to let it rule your life; carry on doing the things you love, and don't give up on those dreams. If you want to be an actress, go for it! 😊

[SRML]

Hi sad-watermelon. Sorry to hear of your struggles but you’ve done a good thing by posting here. I’ve received such a lot of kindness and support from this group and I agree with all the advice already given. I’d like to add some information about surgical options mentioned by HelenWi. I’ve had LVA surgery following development of lymphoedema in my leg after cancer treatment. Nobody told me about surgical options immediately and it’s really important you know about these and find out all you can. I know it’s not suitable for everyone so I wouldn’t want to give you false hope but it may be worth investing in an assessment at least so you know where you stand. I had my surgery at the Oxford Lymphoedema Practice I think it was £600 for an initial assessment and scan of my lymphatics to see if surgery was an option. They were very honest and understanding. A wonderful team. It hasn’t cured me but it has made me more comfortable and I’m hopeful it will protect me from progression and risk factors like cellulitis. They have a website where there is a lot of information. Don’t be scared to give them a ring if you’d like to find out more. Best Wishes

[SRML in reply to SRML]

I should also add that, if surgery is an option, the sooner that surgery is done the more chance there is of a positive outcome. Important to know this!

[sad_watermelon in reply to SRML]

Can you please tell me more about this surgery? I also made a post after I read your comment so I can have other people's experience too and I shared my whole study there if it helps. I really want to thank you for replying to me, it means a lot and you really give me hope!

[Microsurgeon]

Sorry to hear about your leg. From your posts I suspect you have lymphoedema secondary to your cancer treatment. Whilst I cannot comment on what would be best for you I would make a few comments.

The most important start is to get a proper diagnosis and staging of your lymphoedema. The two investigations you should consider are 1) ICG lymphography or 2) lymphoscintigraphy as either of these would clinch the diagnosis. (there are other reasons for a single swollen leg post surgery which may need different treatments)

Once you have a diagnosis, then next stage is to consider what are the best treatments.

Essentially these are - surgical and non surgical.

Which combination of the above will be defined by your wishes and stage of your lymphoedema. I would suggest getting opinions on both options so you are fully aware of the risk / benefits of the many types. You are young and the sooner you get a definitive plan the better it will be for you. This is a long term problem and the sooner you engage in any of the treatments the better the outcomes.

I totally understand you desired to know what is going to happen but this is 'predictably unpredictable'. People could tell you what might happen on average to 1000 patients but what happens to you as an individual is almost impossible to accurately predict.

Finally - lymphoedema is as much a psychological weight as a physical weight and so understanding the disease in as much detail as possible may help you in both aspects.

The LSN is a good place to start your research. The UK has patchy services via the NHS, - St Georges in London and Derby have good unit but don't offer surgery and there are many local lymphoedema teams run by therapists. Reconstructive surgery may be an option over which there is a small number of private specialist clinics. Most doctors / surgeons know very little about lymphoedema let alone what the best current treatments are so seeking out a specialist is worth it.

'whilst you cannot change the direction of the wind, you can alter your sails'

Good luck and hope you make some progress. You are young and asking the right questions, both of which are good news.