Lymphodema

[Titch22]

I’ve just been diagnosed with Lymphedema. I’ve been on some journey the past 2 years & just when I thought it was over I’m hit with this bombshell. I’ve got it in my right breast which has started to spread into my back, upper arm & neck. I’m in my early 50’s, have a very active life socially & do a lot of exercise, eat a healthy diet etc etc & have a very positive mind set but I’m finding it really difficult to come to terms with this life long condition or what the future holds. I think I’m still in shock as I only had 2 lymph nodes removed & just wasn’t expecting it. I’ve been reading a lot & am about to have daily MLD treatment for 3 weeks, but wanted to know how those of you that have the condition cope? What adjustments have you had to make? Any dos & don’t? Any advice would be appreciated. Thank you.

[Jennymary]

I've also got lymphodema but only in the breasts, HU have a lymphodema forum so it might be worth posting on there, also ring the Lymphodema support network, they have a website you can look at, I'll try and post another reply tomorrow but I've been at work and really tired now x

[Titch22 in reply to Jennymary]

Thanks for your reply. What forum are you referring too....HU??

[Jennymary in reply to Titch22]

Yes, at the bottom of the list of communities you're following there's a 'find a community' type in lymphodema and the list of lymphodema communities will appear

[Titch22 in reply to Jennymary]

Got it thanks again!! 👍😊

[Dogdoo]

I had it in my arm, breast and ribs.

I went to physical therapy for massage and drainage which helped some.

I just finished year 3 in remission and my arm is pretty much normal.

I still have troubles in the breast and ribs but some days are better than others.

My main issue is scar tissue and muscle damage from radiation.

My breast is like a rock full of scar tissue and i have problems extending that shoulder and weakness in that arm.

I've adjusted to most of it so it doesn't bother me most days.

[Titch22 in reply to Dogdoo]

Thank you for sharing your experience. I’m glad you’re still in remission and coping with your Lymphoedema 😊

[Jennymary]

Further to last night's reply, I had complete clearance in the right arm in 2013, so I've always been aware I may end up with lymphodema. Think it was about 18/12 after surgery that I developed dry flaky skin on my breast, after a couple of GP visits I was referred to my breast clinic for a biopsy, off I went, laid on the couch breasts exposed, consultant walked in and said 'you've got lymphodema' the biopsy had shown I've got excema for the first time in my life (I'm 57), in my part of the country lymphodema centres are very limited, 3 centres covering a 50 mile radius, fine when I was driving, I stopped in August 2017, and I did have a course of Low Level Light Therapy, which helped. The nurses were kind enough to do a home visit last year as I can't get to them, my measurements have stayed the same, but I've now got a compression sleeve for my right arm as I carry more shopping now I no longer drive. I do my MLD at home daily, and I'm also very aware that lymphodema may spread to other parts of my body, hope this helps x

[Titch22 in reply to Jennymary]

Thank you for replying with more info. I didn’t realise it could spread. I was told by the specialist I see that it will be contained in the upper right side of my body (breast, chest, back, neck, arm) 🤷‍♂️ I will double check this....I appreciate you sharing your experience, good luck with everything.

[Jennymary in reply to Titch22]

Thank you, after the surgery I was aware it could develop in the right arm, but no one ever told me about it appearing in other parts of my body

[Titch22 in reply to Jennymary]

Same I’m definitely going to follow this up. Any reasons why it has developed? Do you exercise regularly I’ve been told this helps massively to keep active.

[Debster2016]

Hi there. I’m early 50’s and have a manual job tho not very strenuous. My 1st mx was Dec 2016. I started seeing a Lymphoedema nurse specialist soon after at Bath RUH in May 2017. She has now left the hospital and practises at her local health centre which is about 45 minutes drive for me. She is very caring and I consider myself lucky to have the availability of her specialist care. I didn’t have many appointments with her but went along when I felt I needed help.

However! I was ‘discharged’ from her care last November as I am managing the Lymphoedema that I do experience.

For me it’s at its worst when I get home from work - I guess when I stop pumping my arm - and just after getting up in the morning, when gravity kicks in presumably.

I practised MLD twice daily from May 2017 until early this year. Sometimes I use the dvd I bought by a lady called Julia Williams who has developed Tripudio Flow, a sequence of moves she has created / developed to help people with Lymphoedema, and I always feel better after a session which is like 7-8 minutes at a time 👍👏.

My advice is to keep up the daily manual lymph drainage, it is part of my morning routine along with some stretches to keep my cording at bay and i don’t find any of it obtrusive.

I also wear a compression sleeve at work.

My wonderful Lymphoedema nurse also gave such tips as:

Don’t wear a boned bra / wear a bra with wide shoulder straps ( I have to buy ‘special’ bras nowadays anyway lol 😅) / avoid carrying anything heavy with my affected arm including lifting my suitcase & moving furniture......😳😆 / keep arm out of the sun / try and avoid hot water eg showers to affected arm / wear rubber gloves for washing dishes & gloves when gardening....I recently had an itch on the under side of my upper arm and eventually 5 little bites surfaced at which point I was relieved to see them as it explained the discomfort in my arm.......

A friend of mine has managed to eradicate almost all of her post surgery Lymphoedema by around 2 years later, she still wears her compression sleeve.

I hope this helps and wish you luck xx

[Titch22 in reply to Debster2016]

Thank you sharing your experience & for the tips, all very helpful 😊

I also find mine worse by the end of the working day. I have an office job & have had to make a few adjustments so I’m not using the mouse with my right hand/arm & I have started using a stress ball which helps pump the fluid. Would you mind sharing the name of the video you refer too & where I can perhaps buy it or is it on YouTube or somewhere else online? I would like to follow that routine if possible. I have to wear a compression bra which is a monstrous thing, I’m dreading it. I get claustrophobic & suffer with hot flushes so not sure how I’m going to cope with it to be honest. Sounds like you have a good routine going & that’s great news about your friend. Sending you very best wishes 😊

[Debster2016 in reply to Titch22]

Hi Titch of course! I have taken photos of the front and back but as I’m a technophobe I can’t see how to upload them......

It’s called The Tripudio Flow - Making the right moves.

The website on the back is gardenstudiosbridport.co.uk. The lady Julia Williams lives Bridport way. I met her at the haven in Titchfield (!) near to Southampton hospital. She massaged my mx scar to help unstick it from my chest wall. She did s super job.

I also dug out another dvd from Brest Cancer Haven (aka the haven) called Lymphoedema Awareness Reducing the risk. This was free and I ordered it online also from the haven.org.uk. I’m happy to post this to you if you want to send me yr address privately. Not sure how .....

Hope this helps but pls do not hesitate to contact me if I can help any more.

Wishing you well and sending love xxx