Lymphodema to the breast

Hi , sorry you’re going through all this. My skin infection appeared out of the blue a year after my op. It presented as a red area over about a third of my breast. I went straight to my GP who prescribed antibiotics (I think the same one you mentioned, 4 times a day on an empty stomach?). He warned me of the risk of it developing into cellulitis so didn’t think it had got there at that point. Also told me to draw round the red area so that I’d know if it was increasing. From what I remember, it was noticeably improving within a few days, so I didn’t have to go back. He also referred me back to my breast surgeon so I saw him the following week. The surgeon was very brusque and quite unpleasant, thankfully he’s retired now. By that time the redness had gone so there was no need for further treatment or investigations. It did seem like it was a straightforward skin infection which had responded to the antibiotics. Terrifying though, I must say I hadn’t expected it and my mind was racing through all sorts of other possibilities. 

From the sound of yours, I’d definitely phone and ask to be seen again, it needs monitoring. I was a lot further away from the end of my rads so I’m guessing your skin is more vulnerable as it’s not been long. Hopefully they will see an improvement but I think you need it to be seen and evaluated. 

Sending love and a big virtual hug your way, please let us know how you get on. HFxx

And just to add, I definitely wouldn’t draw on your breast so soon after radiotherapy - the skin will be very fragile. It was just the advice of my GP so that we’d know if it was spreading! Xxx

Thank you Happyfeet for your kind words and advise. Gosh that must have been so scary after a year, sounds like you have a great doctor! Lol The antibiotics are a pain aren’t they!

It’s scary as nobody warned me, I’m definitely someone who does better with knowing all possibilities! Tbh I’m feeling quite annoyed that nobody told me. 

I have rung my BC this morning and I’m waiting for her to call back. I’m not going to take no for an answer! I need to be seen andI will be asking this surgeon if they actually have any experience of this, I got the feeling the last one hadn’t!

I just don’t get medical people who are brusque , why do that to someone who’s obviously in a very vulnerable state and quite rightly anxious of the unknown, all we need is facts and a bit of reassurance. Hopefully the boss lady I’m seeing today will be kinder! 

I wish I could see my original surgeon he had such a lovely caring and gentle manner about him, sadly he was just filling in for boss lady.

Thank you for the love and the hug, most gratefully received and sending it right back to you . Thank god for this forum and lovely ladies like you X

Oops my boyfriend drew on it yesterday as I remembered it from when I had a bad insect bite years ago. Just little dots so hopefully not too damaging , we’ll see!! Eek

Hi HappyFeet,

Glad to report I got to see a lovely surgeon and an advanced nurse practitioner, both women, who both had the most wonderful bedside manner. Isn't it amazing the difference it makes speaking to someone with empathy and compassion.

She said she suspects I may have had an underlying infection, so it was good I'd got the antibiotics, however the redness and tenderness were definitely a reaction to the radiotherapy, as this is the time the after effects peak ( 3-4 weeks) and she has seen this often, especially in people with sensitive skin. She understood how sore it was. She said think of it a bit similar to sun burn but also on the inside, its very dry and needs TLC.

She said to keep using the cream that they gave me in radiotherapy and also to apply a thin film on the nipple, as this was very dry ( I'd been told to avoid the nipple area, as I was using a foam pad that had medicines in and it would stop that working).

She recommended wearing a bra , even in bed ( a radiographer had set let the air get to it and just wear a cotton top ) , as she said the breast needed to be 'contained', that choice of word made me laugh out loud, a perfect description , as it would help the tissue to heal by being supported so the blood could move around without the added weight, which it would struggle to do without the support.

I told her I'd been getting conflicting advise re bra wearing etc and hadn't been warned of this extreme side effect of the radiotherapy, she rather diplomatically dodged this by saying yes as professionals they all have different approaches! lol

The nurse suggested I get back in touch with the nurse from radiotherapy, who I saw on Monday, and ask her to keep an eye on it and flag anything that looks like its getting worse to them, as they are happy to see me again if needs be.

I feel so relieved to have gotten this news, at least I know what I'm dealing with now and  even though its not very pleasant it will get better in time ( she couldn't say how long ) I also feel better knowing I have a nurse keeping a watchful eye on it. Can't describe the weight that's come off my worrying mind. I'm sure you know that feeling.Thanks again for your support HappyFeet.

I hope my sharing has helped someone else who might be wondering what they're experiencing and given them the impetus to go and get checked out. Don't let the brusque ones put you off, the majority of medical staff in cancer are marvellous!

All the best to all you wonderful ladies on this journey, so glad we can support each other XX

oh and btw the surgeon said it was a good idea to draw on it, thats what they would do to keep an eye on whether it gets bigger. Obv in moderation, she saw my dots and said that was fine lol phew! : )

Hey, just in from mad day at work & catching up with some posts. I'm doing my own LMD massage at home, when I can, but so worried about the spring/summer, bites, holidays etc. IV found all the hintsadvice on here so helpful, comforting to know I'm not alone with my weird shaped boob and spaghettie foam. I wear it everyday & sometimes at night too, not religious with my LMD. but trying to do its often as I can. I too was never really warned about the damage impact of treatment. It's been a shock, but then it's better than cancer. I go for results of PETSCAN tomorrow morning. Nervous to sathe least, hoping new lump is just blocked Lymphenode, if not, well I will just have to deal with whatever they say. Sports bras are pretty good, need a proper fitting, but finding the time to go, I'm drained, mentally with tests for RA too, praying I don't have an auto-immune disease too. Anyway, let's keep our chins up, well mine anyway lol. We will get through this BC journey xx

Hooray , that all sounds very reassuring! Interesting re nipple, mine was ridiculously sore and sensitive after rads, I’d forgotten that minor detail! Good that they’ve recognised that it needs a bit of extra care. Also interesting re support from bras - I wore soft post op bras until I saw the lympheodema nurse who told me to get a bra with full support. 

Re being warned about these side effects - I think it’s a balance between preparing us for potential problems and not scaring us so much that we’d refuse the treatment? And lots of folk seem to escape with virtually no adverse effects at all. I did find reference to breast lympheodema in the radiotherapy booklet I was given, but my brusque surgeon didn’t recognise it at all - he seemed very defensive, as if I was suggesting that it was from his surgery (which I wasn’t at all, I’d made it very clear that I’d been diagnosed with it by a specialist nurse after referral by the oncologist, at a post rads review). 
Anyhoo, I’m so glad that you’ve had a thorough examination and ongoing monitoring. 
Good luck tomorrow with results , sorry you’re going through more investigations, hopefully reassurance soon. And I agree totally re the shock of treatment side effects. 
Love to all, HFxx

Very good way of looking at it Tess1965, it is most certainly better than cancer! I hope your lump turns out to be a cyst. 
life throws all this stuff at us, yet we somehow manage to get through hey…as an old friend used to say ‘TINA’ …There is no alternative lol

The best of luck to you with all your tests! 

Thank you HappyFeet Interesting about the lymphodema nurse saying to get bras with full support. Did she give a reason why, or was it similar to the advise I got about weight and healing? I’ve found M+S flexifit bras have been quite comfortable as no Seams and soft fabric ( obv no underwires). How about you?

 How peculiar that your surgeon would take offence. Surely just being compassionate that you’re having to live with it is all that’s required. As Tess1965 said it’s better to have these side effects than cancer, however it costs nothing for medical people to sympathise with the shitty side effects we have to go through.

Yes what you say about them not telling us too much makes sense.The oncologist did say that my skin would get sore but it never really sunk in how bad it would get, I think because I’m more visual and would have preferred pictures. Probably didn’t help that she spoke over the phone and it was a long list of side effects! As you say the majority of people won’t have skin this sore. I think mine comes with having sensitive skin!

Anyway I hope you all sleep well. Tomorrow is a new day to be loved one moment at a table me.

Blessngs to you all XX