Breast swelling over a year after radiotherapy

[Katie_S]

Hi everyone,

I had a lumpectomy in September 2022 and radiotherapy December 2022. I had some swelling a few months after radiotherapy and saw my breast care nurse, who suggested that I try some light massaging and some stretches. It took a while, but this really worked.

Last year I built up my fitness, went for 8 mile walks, did some dancing in front of the TV etc.

January this year I started going to a line dancing class - 2 hours on a Thursday evening, I went back to my volunteering role at a community garden and dug up some plants and started doing 4 miles walks quite regularly.

The swelling has gradually come back and got so bad that I got it checked again - an ultrasound showed a seroma, which was drained. A week later it filled up again.

I tried to sow some seeds in my shed (so really light gardening) and had to sit down because the pain made me feel sick. I know that sounds dramatic, but it really made me feel nauseous.

I have spoken to the nurse again, they do not want to drain the seroma again, because it will keep coming back. I can understand, but it’s really impacting my life and I just can’t get my head round it - having been so active just a month ago, I now feel pain in my breast whilst taking a small walk round the block.

I asked the nurse if they think I’ve overdone it with the exercise, but they said that it probably would have happened whatever I did or didn’t do and that I should not avoid doing anything in particular.

I have started doing the massages more often, and it does ease it, but it swells again pretty quickly.

I have read others’ posts and it does sound like the swelling can stay for years after treatment, I just wondered if anyone else on here has experienced intermittent swelling and pain?

Thanks all - the breast cancer community definitely helps and gives a lot of support.
Katie

[blue80]

Hi Katie

Sorry to hear you are struggling with this. It sounds very annoying!

I have just finished radiotherapy and have a bit of swelling myself but obviously not as far down the line as you. Hopefully you will get some helpful responses from others here and might also be worth directing it to the breast nurses on here as they may have other advice. Good luck and really hope it settles down soon x

[LucyJ_BCN]

Hi @Katie_S

It sounds like you’re going through a lot and it’s no wonder you’re frustrated.

I hope more forum members can share their experience, but I just wanted to hop on and say that our breast care nurses are always here if you want to talk any worries through. You can contact them here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.

We’re thinking of you.

[Katie_S]

Hi Blue80 and LucyJ, thanks for your messages.

I have just posted on the ask our nurses section.

Take care,
Katie x

[M0lly-Chorley]

Hi Katie,

So sorry to hear you’re struggling with the pain. I am in the same position with the swelling but they won’t drain mine. They also confirmed it was a seroma and said I may need some constructive surgery in a year or so as it appears to be pulling the tissue in as it’s slowly draining naturally. To be honest I’m ok with shape changes as long as I know it’s nothing sinister and they’ve reassured me that’s the case.

My radio finished in May 23. I do find being active helps with the pain and so don’t put it down to that.

Bed time is the worse for me if I roll over to that side.

the consultant recommended I wear very supportive sports bras (the ones you would use for running) even at night as it helps with the nerves. I’m currently giving that a go and so far so good.
I’m sending big hugs and well wishes that it gets easier for you soon. Take care xx

[Curlywurly1]

Ive had my post op seroma/ haemotoma aspirated 5 times in the past 10 months

Im now using a heated cherry stone bag in my bra every day every 2 hours along with arnica cream to try and get my body to absorb it

My surgeon thinks it will eventually go but because of the honeycomb ducts in our boobs she cant always get all of it but each time its less

Massage helps too so speak to your breast nurse or look on youtube for lymph massage

[Katie_S]

Hi Curlywurly, sorry to hear that you are having a similar problem.

I have started to massage it a few times a day and that is helping.

I always wear a sports bra, but I’m going to book a fitting and see if a better one might help. Fingers crossed!

I hope that yours eases soon.
Katie x

[kiki22]

Hi

Similar situation as you, lumpectomy in June 22 finished 10 rounds of radiotherapy in October 22. General swelling after rads then went down a bit, now my breast is probably 1 to 2 cup sizes larger than the other (normal) breast. Recently had a bra fitting at the breast clinic, so the larger breast fits correctly & a partial prosthesis for the other side, which is helping a bit. I have been referred to the lymphoedema clinic, hopefully they will help with the pain & swelling.

[Katie_S]

Thanks for replying. My breast care nurse called to check how I’m doing this morning.
I said that the extra massaging is helping but it’s still very sore.

I am going to get it looked at by a nurse at our support group this Saturday and also go for a bra fitting at a specialist post surgery shop.

So will see what they think x

[Katie_S]

Hi,
I have been checked out again and it looks healthy, which was a relief.

I have also been fitted for a bra and bought 2 of the cancer research post surgery bras. They are soft, have no seams but the weight is taken on the shoulders and it is helping a bit.

So, it seems that I need to give my recovery more time. I am struggling to get my head round this, given it’s been so long since my treatment.

Hopefully with more time, massaging and more suitable bras I will continue to heal.

I am working on accepting things as they are and not as I think that they ought to be.

Katie x

[Steph_J]

Hi Katie
My surgery and radiotherapy was the same time as you . I am still tender and have recently started to wonder what it is . I havent had it checked yet but after reading your thread it looks as though I need to . My main problem started with pain at back of neck in between neck and shoulder with uncomfortable sensation into back of arm and into hand . Physio felt it was linked to radiotherapy although radiologist said not as didnt go near that part of body . Quite frankly I wasnt bothered about cause just wanted to rectify or ease the discomfort . Physio could only give me excercises and advice as it was more nerve pain . She did identify a pocket of fluid under my arm which could have contributed and she did advise some massage . The breast discomfort is more noticeable when I touch it / rub with towel etc . Im sort of glad its not uncommon as I was starting to worry .

[Katie_S]

Hi Steph
Sorry to hear that you are having pains as well but it is reassuring to know that this seems to be normal.
Can I ask, have your pains been since the treatments, or have they come on more recently?
I had to call the follow up team again this morning because I’ve started having a heavy feeling in my arm. Think they’ll get sick of me calling! I know that’s what they’re there for though.
I am still trying to get my head round it all.
Hope you can get checked soon and that they have some suggestions that help.
Take care x

[JoanneN]

Hi @Steph_J

It sounds a bit like you may have a trapped nerve which is causing referred pain down you arm and into your hand . I’ve experienced this a few times both before and after surgery though it’s been worse on the unaffected side - the pain was exactly where you describe it… In some cases I haven’t been able to identify what caused it , in others there was an obvious cause ( fell and landed on my shoulder ) . Any kind of muscular tightness even caused my anxiety or not being able to move that arm and shoulder as well as normal or stiffness or swelling like the fluid I der your arm could have caused this . I found Ibuprofen helpful , and an Osteopath also managed to partially free it the first time it happened ( thank goodness because I was losing the use of my hand ). I wasn’t able to get any Physio for about 10 weeks but I eventually I was given neck exercises to which were initially painful to do but eventually did help. I’m just wondering if you might benefit by being assessed by someone who is aware of your breast problems but isn’t quite so breast orientated in case there’s something that can be done to help. My Osteopath is always my first port of call when I get an injury and without her help I wouldn’t have been able to hold my arms over my head to have radiotherapy as I’d damaged my rotator cuff in the fall only a couple of weeks previously.

Wishing you all the best. Xx

[naughty_boob]

Hi @Katie_S

Sorry to hear to about your side effects. So frustrating when you have done so well and to have a set back.

I attended a scar therapy zoom (available for all the U.K.) with www.pennybrohn.co.uk and they say that radiotherapy is the gift that keeps on giving and recommend very gentle touch techniques rather than deep massage. I recently bumped into the lady from the course at their centre and mentioned my ongoing side effects. She said most radiotherapy centres have a late effects service in Bristol. I’m based in Wales so wasn’t applicable to me but will check with my centre if that is available for me. This maybe a service at your hospital aswell, it seems to be with MacMillan.

https://www.uhbristol.nhs.uk/patients-and-visitors/your-hospitals/bhoc/information-and-support/macmillan-radiotherapy-late-effects-service/

Hope this helps and wish you well with your recovery

[Katie_S]

Hi Naugty boob - great name!

Thanks for the advice and links, I’ll check it out.

I’m trying to focus on what I can do - walking, which I like and I’ve started going to a pilates light class.

I suppose I didn’t realise how much it changed my body.

I hope you find some things that help you.
Take care x

[naughty_boob]

I hope the information helps.

I had my lumpectomy in July, chemo and Herceptin (continuing) from September to December, radiotherapy in January, and Letrozole, so not as far ahead as you. I like you started walking, trying to do light exercises and gardening but it’s a slow process. I have been told to be kind to myself and give myself time to heal, a physio I met at Penny Brohn said at least 8 months to get back to what was normal before BC.

[Katie_S]

Hi ladies,

I went to see the nurse in my follow up team yesterday. She is pretty sure that I have lymphoedema of the breast. She has referred me to the lymphoedema clinic in my local area. I am actually feeling glad to have more answers and hope that the clinic will give me more specific advice about how to manage the condition.

I am sure that it will take a bit of time for this news to fully sink in, but for now I just have to get on with things as much as I can. I am lucky to have a supportive partner, though it is difficult when she has not experienced the same things.

We are going out of a curry tonight though, looking forward to that and Easter is just around the corner!

Take care of yourself everyone,
Katie x

[naughty_boob]

Hi @Katie_S

I’m glad you have been referred and hopefully you will get some help from the lymphoedema clinic.

I’m not sure anyone knows how you feel, even our nearest and dearest can be shielded from our worst inner most feelings as we try and protect them. They go through all the treatment with you and can only watch. I’ve had a bit of a down day today when a few people said things that upset me. Nothing major, just that they questioned me or made a comment that I would have brushed off in the past.

Enjoy your curry and your extended weekend.

[Katie_S]

Morning,

Thanks for your reply.

Sorry to hear that you had a down day, hopefully today will be better. Maybe a little treat for yourself would help? Even getting a nice coffee or having a relaxing bath.

I just wanted to mention this in case anyone is experiencing similar things. I have not found much info about this online. When we do cardio exercise it makes the lymph fluid pump more vigourously than normal, so if you have lymphoedema in the breast it can make swelling or pain worse.

I have been told that the benefits of exercise make it worth doing. I might just need to do some extra management of the lymphoedema after exercise.

Take care,
Katie x