Breast Oedema Advice Please

Hi Sept78, I also have breast lymphoedema, and agree it's difficult to find much that is for breast rather than for limbs. Mine is mild and luckily seems to be manageable by doing regular Nordic walking, which I started following advice at my first appointment. The nurse also suggested swimming so I have tried to do that reasonably regularly pre lockdown. Not much help to you at this time.

Have you tried LSN - the Lymphoedema Support Network? I was given their leaflet at my first appointment so joined them, and receive a quarterly magazine and can apparently access videos but haven't managed to do that. Again, much of the information refers to limbs rather than breasts but could be worth a look. I was only shown the exercise which involves massaging under the arm - I do try to do this but am not sure how effective it is or even if I'm doing it properly. I was also told to get more supportive bras (I was still wearing soft post op bras), the nurse said they had to be supportive enough to give me a proper cleavage! So I went to M and S and got 'fitted' for the first time since I was about 14! But you probably know all this already. I don't know about you but I've never been able to go back to sleeping on my side, as it feels uncomfortable and/ or sore whichever side I try, and I think this is due to the lymphoedema. I've given up trying so have pretty much got used to sleeping on my back. Apparently that's better for posture generally anyway. 

Re the foam, sorry don't know any suppliers but it was mentioned to me as a possibility for the future, if necessary, at a recent breast clinic appointment which was a follow up to a probable skin infection. Could you phone the lymphoedema service to chase it up? Or possibly phone the breast nurses to ask their advice? As far as I know these services are still operating even if routine stuff has been halted.

Sorry I haven't got much practical help to offer. I do feel for you as it is a constant reminder of what you've had to endure as well as still suffering. I'm relatively lucky as mine seems to me a mild version, but when I had the skin infection in December it put me into a state of blind panic, imagining all sorts of possible causes and consequences. Thankfully it cleared up with antibiotics but it was a shock all the same. 

Wishing you well, love and hugs, HFxx

Hello

I'm a boob lymphedema person too. Dolly Parton one side Twiggy at the other.

I know what you mean about information mainly being for limbs it is a problem. I've had two lots of breast cancer and history of lymphedema in the other arm which seems to have settled now which is a good sign.

When I had my final appointment in January I was told the pain redness a inflammation was a combination of infection and lymphedema. The typical signs of lymphedema are skin which looks like orange peel if you push it together and lumps that for me seem to appear and disappear. They depend on how I sleep,which bra etc.

There is some massage videos out there it's just a matter of searching. I went to a local independent bra shop who was very knowledgeable and far superior to the m and s experience. Difficult at the moment but something to bear in mind. I did get some of the bumpy foam. But prefer the tape.

The other thing I was shown is the tape physios use.kinesiology tape you can buy on line. The nurse put a piece about eight inches long going from just below my armpit under my nipple and then up onto my chest. Another piece she put over my breast. It's hard to describe. This definitely does work and I've played with how and where I stick it till I'm getting the best results. It's very hard to explain so if you request a private email I can give you my number then we can face time and I can show you.

Massage as often as possible. Start at the top of the chest then stroke up in progressively longer sweeps. Under and round away from the armpit. Again I can show you.

So keep going it does get better, but you have to be diligent.

Sending hugs.

Hi I found good exercise options by searching google and YouTube and I am doing hand weights for extra excise. I find you have to do the exercises everyday to feel relief  but of course sometimes I can’t be bothered.

There are specialist lymphatic drainage massage clinics around or a physiotherapist will be able to help you 

I also do body brushing (Google search for information) really great for lymph system 

Its a pain but I think it is something that I am just going to live with xx

I got a body brush first time round. It was expensive. Worth it though. With a bit of bleach it brings the grouting in the bathroom up beautifully. Lol

I've got an insert now so if it's bad both sides look like Dolly P. 

Hi HappyFeet1, thanks for your reply.  I believe my oedema is mild too so I shouldn't complain too much but the upset it causes me seems so out of proportion compared to everything else.

I did plan to do a Nordic walking course at the local Maggies Centre but obviously that is out of the question for who knows how long.  I can't swim but was investigating local swimming lessons before the lockdown as it would be good for both the oedema and my osteoporosis. Strangely enough, I went to M and S to get properly fitted thinking that would help...… not sure they knew what they were doing as it seemed to get worse when I wore the bra they recommended!  It has been thrown out now.  The pain I get now is worse than any pain I had following my lumpectomy, obviously was lucky to get a very good surgeon.  I can usually sleep on my side but sometimes it is too much for me.  I am not looking forward to the hot summer nights as wearing a bra already makes me hot.  Sometimes I get a break from wearing it when the skin looks as if it is getting tender.

I have had a couple of blood tests to test for infections as the affected boob tends to look red most of the time but so far it has been negative.  I definitely know what you mean about the panic whenever it looks different.  I also worry about knowing the difference between another lump appearing, the thickening of the scar tissue and the gathering of the lymph fluid.  How can you ever be sure which is which??

I did phone the lympheodema clinic to chase up the foam but it was still on order.  

I hope you continue to manage your oedema successfully.

Take care, Alison x

Hi , thank you so much for replying.  

After the lupectomy I did expect one side to be much smaller than the other and wondered how I would cope with bras.  As it turns out I only had that problem for a few short weeks as the oedema has brought the operated boob up to the same size as the normal one!  Do you find that your bra size changes?  I kept going up a size as my bra felt so tight but I realise it is just the fluid causing the increase in size so now stick to what was my usual size.  I have never bought so many bras in my life trying to find some that are comfortable!  Having usually bought my bras from M and S I now find I cannot get one from there that is supportive enough and comfortable enough to wear all day.

Interesting that you don't find the bumpy foam to be much good....the lymphedema nurse never mentioned the tape to me although I have read about it being used.

Thank you for the offer of showing me how to use the tape.... if I can work out how to, I will definitely request a private email.

What I find most difficult is that it all seems to be very vague.  No-one seems to be able to say, do this and it will definitely improve.  It does feel like a very long tunnel to get through but thank you so much for the encouragement.

Take care x

Hi , thanks for the suggestion of body brushing, I would never have thought of that. I do have a body brush so will do a google to find more information.

I would love to have a lymphatic drainage massage and that is on my to do list when we are allowed to do things again!

Take care x

This is an interesting thread to me as I was diagnosed yesterday with having lymphoedema in my arm. I had thought one arm (operated side) looked a bit bigger than the other. Also my fingers on the same side feel a bit weird and need a lot of bending and stretching in the morning to get going. And the third thing, I noticed my ribs seem bigger on my operated side than on the other side. I simply put it down to being able to get a better view on the side where there is no boob !! Anyway it turns out, I have lymphoedema. I am 5 months post mastectomy today (happy birthday to me !!).

Some of you have mentioned what to do with limb oedema but this is not what you are looking for. As this is precisely what I am looking for, can anyone advise ? I am exercising well and I have gained full movement in my arm since surgery. Wondered if there are any other tips or tricks I can be doing to avoid this getting worse ?

Thanks in advance. xx