Newly diagnosed

[Celie1]

Hi all,

Hope you’re doing ok.

I’m in the UK and have recently been diagnosed with breast lymphoedema after treatment for breast cancer.

My operation or radiotherapy or both, have damaged my lymph system and I have fibrosis and swelling in my breast. I have been to a lymphoedema clinic and the nurse there said I had a cellulitis infection which I’m now on antibiotics for. I had had some heat and itching for a couple of months prior to this which made the nurse think this was a low grade infection.

She also showed me how to do self massage and contacted my doctor to prescribe moisturiser and padding for inside my bra.

I wondered if anyone else on the forum has breast lymphoedema and how this affects them.

Best wishes 🤗

[lovesradio]

Yes Celie1 there are other members on this forum with breast lymphoedema so I hope you get some responses. The Lymphoedema Support Network also has information about it so have a look at lymphoedema.org and see what you can find.

[Celie1 in reply to lovesradio]

Thank you for your reply and support.

I’ve already been on the Lymphoedema website and become a member. There’s lots of useful information on there and I was able to purchase a ball for my self massage. I was finding it difficult to find a ball with the right amount of ‘squishiness’ , so that was perfect.

[Abbie104]

I’ve got lymphodema in my right breast, upper arm and upper back, I’ve had it for around 6 years after removal of lymph nodes due to cancer. My right arm is not as strong as it was and I can’t stretch in all the usual directions as I did before. Initially my lymphodema clinic sourced specific adjustable bras for me, though they weren’t particularly suitable for my frame n during lockdown when I couldn’t get measured for new ones I started using front closing sports bras n I’ve found these better for me than my normal underwired bras (I was 34HH when I began this lymphodema journey, so I needed support. When it’s hot the lymphodema swells n no matter what bra I use I’ll get a “third” boob, there’s nothing I can do about the weather, so I focus on what I can do, eg I drink lots more water/herbal tea than a normal person of my height n weight as this does help the lymph to move. Doing daily dry brushing n MLD (manual lymphatic drainage) massage is also important to try to maintain where I am n not let it get worse. I’ve always had lots of colds n since even a little sniffle can result in a flare up, I’m super vigilant about staying away from anyone that I know who’s ill and if I’m out using sanitizer etc. Not everyone is as bad as I am at picking up colds, though since it’s also in my arm I have to be careful not to get cuts/injections in that arm, as that can lead to cellulitis, etc. Therefore I always use thick gloves when washing dishes , housework, diy and gardening. Since the lymph travels through your body kinetically (rather than being pumped by the heart like blood) it’s important to move those areas constantly throughout the day, unfortunately the breast does not move, so all you can do is move your arm. You can do this by swinging your arms when walking, swimming, dancing. I also moved my hand wash to the top of the bathroom cabinet which means I’m always stretching when I wash my hands. I’ve adjusted things in my kitchen as well to make me stretch, though not strain myself. The pain when I have a flare up is not good though I try not to use painkillers too often as your body gets accustomed to them n you need stronger n stronger painkillers, I prefer to use hypnosis to control my reaction to pain for the most part n only take painkillers at its absolute worst (pain can be m a heavy numb feeling, a painful pressure or sharp jabbing (or any combination of these). If you only have it in your breast it may not affect you in the same way, though since it’s in my breast n back, when these areas swell they compress my lung n I can easily become breathless. Lastly the fatigue is real n I’ve had to learn what works for me n how to manage it. It’s not about being tired n pushing through it, its about having no energy whatsoever n the slightest thing is too difficult. When I feel I’m starting to like that, that’s the signal to slow down or stop. If I know I’m going to have a “big day” I’ll conserve my energy the day before n try to make sure I’ve time to rest the day after. Basically I pay attention to what my body tells me and adjust accordingly, the first couple of years were the hardest as I tried to do my “normal” n it took me a while to adjust n accept that things had changed, once I did it was easier for me. Hope this is of help and I’ve not freaked you out n happy to help in any way if I can

[Celie1]

Hi Abbie,

Thank you for sharing your experience and useful tips. It helps to know how other people have coped with this.

I’ve been feeling quite fatigued, but I put that down to the infection. I didn’t know lymphoedema could affect your energy levels.

Like you, the heat seems to make the swelling worse. I try to keep active and still do all the post op stretches twice a day and I aim to swim more. I like the idea of putting things you use regularly, high up so you stretch as just part of normal routines.

I don’t know about dry brushing 🤔. The lymphoedema nurse showed me how to self massage twice a day and I’ve got 3 appointments in December where she’s going to use some kind of machine - not really sure what it’s called but to help with drainage.

I don’t have pain as such, it’s more discomfort, itchiness and irritation. Also I feel I have to adjust my boob in my bra all the time which is annoying.

I’ve got my first mammogram since the op., coming up soon and I’m feeling quite anxious. I’m hoping it’s not going to be too painful. Also there’s always the worry of recurrence of cancer. 😟

Sending best wishes and thanks ☺️

[Abbie104]

Unfortunately the possible recurrence of cancer never leaves, though I’ve found it best to not overthink or focus on what ifs. It’s a mixture of mindfulness n positive thinking, when the thoughts pop into my mind I accept the concern then focus on something positive (even if the only thing I can think of is silly stuff like what a rainbow looks like (I love them) reading, watching tv, listening to music etc). It’s something you have to train yourself to do and at first it’s not easy, though the longer you do it the more easy it gets (I’ve practiced it for over 30 years and I still have negative thoughts, especially when life gets tough, I simply don’t get caught up in a negative loop and that works for me).

I had a mammogram about 6 months after my last surgery and I explained before they started about my surgery, then at the next one about my lymphodema and they were very careful, yes it’s not nice and slightly painful (isn’t it always), though it’s over quickly and you have the reassurance that a) there’s no sign of cancer, or b) it’s been caught early enough to treat it easily.

The discomfort, itchiness and swelling are kind of standard, though the pain can seem to pounce on you for no reason, until you start to understand the patterns, eg I never let myself become dehydrated! Drink more than you think you need.

I use a silicone brush (photo attached) and like MLD I brush gently from the outer areas towards the nearest healthy lymph node. I have lymphodema in my right breast, upper arm n right upper back, so my process is as follows: starting at left just below clavicle, brush right n slightly downward to “wake up” lymph node, then starting at my back I brush towards my underarm, then from just above elbow to underarm, then underarm towards middle of chest and from bottom of breast upwards n towards middle of chest, then middle of chest towards “active” lymph node. Like MLD it is very gentle, I think using the end of the long handle even on easy to reach areas is helpful as you can’t press hard. There’s no set type of brush, so I recommend doing some research n try using different types if possible to find what works best for you.

Take care n know your not alone, there are Facebook groups that can be useful (if only to moan or rant to those that understand occasionally), as well as here n lymphodema UK etc.

Today’s a sunny day (though frosty earlier), so my crystal suncatchers are making lots of sparkles n mini rainbows all over my living room 😁🥰💞

Silicone long handle brush