Lymphodema to the breast

Hi Susie, so sorry you are going through this. After my MX with lymph removal 11 years ago I had Lymphodema, its horrible. I got stung and had a bad reaction, needed anti biotics. Things improved though and I found that gentle exercise was the best and build it up very gradualy. Swimming was very good. Light weights. Speak to your doctor or physio first and get a plan for exersice and keep it up if you can. I hope you get some relief very soon. Sending hugs. 

Thank you for replying x. I’m pleased to hear things do get better, everyday I get up thinking is it a little better - nope, not at the moment, but I need to be more positive 

Hi Suzie62

My wife had her surgery in May and she too has been trying to cope with breast and under axilla lymphoedema.  I have been supporting her, throughout and frankly have been extremely disappointed to put it mildly in the treatment, or rather the NON-treatment she has received under the NHS.

The NHS has generally been uncaring about the lymphoedema, and even with persistence, it has been really difficult to have a face to face with a lymphoedema specialist.  The initial response was just to send us photographs, then they did nothing.  Wiith persistence my wife saw a BC nurse who was obviously not a lymphoedema specialist.  Her advice was absolutely minimal and wrong.  Through our own initiative, we eventually managed to see an NHS physiotherapist who specialises in lymphoedema.  She was nice and helpful and the session lasted about an hour.  However, the bottom line was you are shown how to massage and apply tape, and advised to get a sports bra, and that is about it,  No further massage (MLD) was arranged.

When we read about the problem online it appears you require to have manual lymphatic drainage massage (MLD) a number of times a week over a period of time, in conjunction with special taping, and that was not on offer under the NHS.

My wife was initially quite buoyed up when we managed after 7 months of trying, to get an appointment with the lymphoedema specialist but has since gone on a downer when there was no ongoing provision of MLD and taping, basically just a one-hour session.

I started a thread on this site over a week ago asking for help from those who had been successful in dealing with their breast lymphoedema but did not receive a reply from anyone in that category. Latchbrook kindly sent me a link to older threads.

As with a number of issues since my wife started her BC journey you somehow have to find your own way forward by researching and unfortunately have to possibly try and compliment the lack of NHS treatment by looking to the private sector for frequent MLD and use savings to achieve this where you can.  

Despite repeated attempts, my wife has thus far been unable to identify and obtain a suitable support bra.  There is also not much help with that.

We would be interested in your experience in terms of advice and treatment?

D

Hi , I’ve just seen your post (finding the new site a nightmare, really only managing to keep up with a couple of established threads). I’ve just replied to Dedalus’s post too as I’d only just seen it! I can’t copy and paste so will try to summarise (rather than my usual ramble).

Developed breast lymphoedema after radiotherapy.

Had referral to lymphoedema nurse who advised Nordic walking and/or aqua aerobics. I started tge Nordic walking and at my follow up lymphoedema clinic appointment (this was all well pre Covid and I think I was lucky with the local service) the nurse felt it was very successful in reducing the lymphoedema. 
I have been doing the walking for over a year now (mainly online zoom classes with local group atm) and feel ongoing improvements in arm/ shoulder mobility as well. Cannot recommend it enough, thibk there’s something about the arm action and resistance from the poles that seems to work well.

Swam weekly for a while but not really my thing. Also had a skin infection on that breast a year after my op and that put me off swimming. Then Covid of course. It might have worked just as well. 
Bra fitting - I went to my local M&S, nurse told me I needed full support and uplift to give a cleavage! I have smooth cup supportive bras now (no wires) which also seem to help. I wear a sports bra for exercise but never all day as it leaves ‘pitting’ on bad boob. 
It never feels totally normal but is way better now, nearly 2 years on from rads. I still have to sleep mainly on my back, having been a life long side sleeper, but use extra pillows to help and can recently sleep for stretches on my side. Strange what has become ‘normal’ for me. 
Sorry still a long ramble but I’ll probably lose tge whole post if I go back to shorten it! Hope some of it helps, love and hugs, HFxx

Hi again , forgot about your questions re Sun, garden and insect bites.... here’s my take on it - 

I am out walking for hours on end - I call it my sanity saver. I wear long sleeved cotton tops in summer to protect from sun and insects. I went to Bali the summer after my op and had every possible vaccination (in other arm) and took enough DEET for a family of 12 (there were 3 of us). And I wore long sleeved loose cotton shirts (good old M&S). I bought a couple of Nosilife, anti mozi shirts but found them too hot. I took daily anti histamine in case of itchy bites. In the end I mainly used a ‘natural’ anti mozi lotion and survived with very few bites. And I didn’t scratch them because I was taking the anti histamine. If any one needs a supply of DEET, let me know! Topless sunbathing hasn’t been my thing for many years now so didn’t miss that! 
I am definitely more careful re sun and insect bites than I was but it doesn’t stop me being out every day, often for hours, whatever the weather. I don’t do lots of gardening but wear gloves when I do as a precaution. 
There are lots of horsey people on the site who must be out a lot in all weathers and are also lifting heavy weights (hay etc). 
I won’t say it’s not a worry for me and it probably helps that I’m not a sun worshipper anyway, but I don’t think it restricts me that much anymore. I have gradually become less fearful about it. HFxx

It makes me very sad to hear how Ladies have to fight for the treatment they NEED! I can recall when I was diagnosed back in 2013, a big folder full of leaflets telling me all about Breast Cancer and the treatments. One thing stood out for me Lymphoedema, I was going to do everything I could to reduce my chances of developing something that would be a life long condition. I didn't go through surgery, chemo and Rads just to be left with a very visible side affect!

So after surgery I did everything I could to avoid any problems with my breast and arm! I even bought a rubber wrist band that said no blood tests from this arm, Lymphoedema risk!! However it turned out the bracelet helped me to see I WAS developing Lymphoedema.it started with waking in the night with my fingers looking like sausages, but they were gone by morning so I assumed it was something else. Eventually as the band on my wrist started to get tight I called my BCN to ask for a referral, after all the paperwork at the beginning had said if you notice any changes/swelling contact them asap as the sooner they can start treatment  less damage is caused.

It took my 3 months to finally see a lovely Lymphoedema nurse. She took all the measurements and then told me what I didn't want to hear, I needed a sleeve to keeping the swelling down and help the lymph fluid to flow! I was taught how to massage and then she showed me how to massage the breast always sending the fluid towards the working Lymph nodes! 

I saw this lovely nurse again after 3months then another 3 months at which point the arm had got smaller and I was able to go down a sleeve size! Yayyyy! 

Since then I have seen a nurse every 6months and now yearly, unless I feeling need to call in between. She said as my arm seemed stable and I was doing what I needed to do they didn't need to see me, unless I wanted to stay on their books. I opted to continue with the annual visit. As I knew it would be a struggle to get back on their books!

Lymphoedema is one of those things that can just sneak up again and start swelling without you really noticing. Right now I wear my sleeve daily but my fingers are playing up! I stopped taking Naproxen due to stomach issues so now joints are very painful, especially my fingers. So it might be I need to try a glove to get the fluid moving, I keep putting it off because it just looks awful, well for a 45year old! But if it helps reduce the swelling and pain, I'll try it. My other hand can be sore as well so I am thinking it might be menopausal side effects. But seeing nurse next week so will see what she says!

Apologies for the very long babble, but hopefully its reassured you that there are nurses out there but sadly you do have to fight to get to see one! In fact one suggestion is to go to the site that asks for feedback for your hospital. Make it clear that you feel let down by your NHS hospital and that Covid can't be used as an excuse for everything. If it's anything like my hospital PALS will be in touch almost straight away, then go from there! Never Take no for an answer, they caused the Lymphoedema through their treatment, you deserve the care from a qualified Lymphoedema nurse!!

On the subject of breast Lymphoedema I had a huge large lump towards the bottom of my breast, orange peel skin and a weird blue/grey colour. What upset me was the original lump was hardly noticeable but now I had a huge lump! Lymph nurse said it was the fluid pooling at the bottom of the breast, if I had massaged the breast after treatment it might not of formed but I wasn't told that. Anyway on one visit after taping failed as it created large blisters in my back. They came in with a weird lumpy piece of foam, she cut me off a piece and said to wear it in my bra every day for a few weeks. I did and I don't know how but the lump broke down and dispersed and now my breast feels normal, well as normal as it can! Worth trying for any of you who want to try something different.

Good Luck to others of you FIGHT to be seen. That's what they are there for!! I know it takes time and energy that you probably don't have but it'll be worth it in the end!! 

Apologies again for boring you all. Sal xxx

Hi LondonLass

Many thanks for taking the time to discuss this problem.  It was useful to read about your personal experience.  There are also some useful tips.

D

Hi, thank you for your reply, I am just finding my way around the site, with difficulty at the moment.

I relate mostly to what you say your wife is going through, I hope she is well at present. I was fortunate that I was referred to our local NHS clinic who have a Lymphodema specialist nurse, I didn’t even know they existed ! As with your wife they offered advice on daily massage but also provided special Lymphodema bras, which have been immensely helpful, no others have compared, I have been able to be much more active without feeling so uncomfortable throughout the day.

The cancer care team at the hospital your wife was treated should help you with this, do contact them.

Thank you so much for all the information, I really have found this extremely helpful. I felt selfish for thinking about concerns going out into the sunshine but my husband and I have a holiday home in the Canary Islands which we purchased after he went through prostate cancer and this was our escape, and now to think I couldn’t enjoy was all overwhelming, but like you I will visit my favourite M&S and not be scared but very much aware, thank you x  I will need Deet !

best wishes 

Hi Happyfeet,

I came across your post whilst looking for info on skin infections. Please can you tell me more about what happened with your skin infection, how it was treated and how long it took to clear up?

Ive spent the last few days taking antibiotics, after seeing a nurse at the radiotherapy department on Monday ( said to call if any issues) with rather red skin on my breast and puss. She thought it was a skin infection ( cellulitis) and prescribed fluoxacillin .

Went home and looked up cellulitis in breast cancer and found quite a few articles warning of possible abcess alongside, so back on the phone to my Breast care nurse who kindly fitted me in to a clinic that day.

Saw a rather brusque prof ( first brusque professional I’ve encountered so far) , who ordered an ultrasound , no abcess. Told to keep taking antibiotics and if no change call breast care nurse again Thursday and ask to be seen in my regular surgeons clinic.

going to ring in the morning as feeling very anxious that the antibiotics haven’t worked, breast still sore and swollen, mind racing as to what might happen next. I wish the prof had spent more time explaining what might happen, his manner put me off asking.

I wish I’d been warned about the possibility of infection, nobody said anything, even though I was warned about other rare side effects with radiotherapy.( finished 11thJan) 

any advise or info you could share would be most appreciated