Lymphoedema in Breast

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1

Hi,

I was dx 18 Aug, left mx and immediate LD recon, gd 1, 1/9 lymph nodes with micro mets. Am having 6 x FEC and then tamoxifen (have 3rd FEC next week).

When I saw my surgeon last week I reported to him that anything I wear on my recon boob (bra, top etc) or if I leave my arm pressed against it too long etc, I get an indentation to match (strap mark etc). He said that I have slight lymphoedema in my breast as fluid in the breast/skin doesn’t drain out through my lymph nodes as well and that it may settle.

Assuming my back muscle is still attached to its original drainage system and my breast skin is still attached to its original drainage system I am concerned as to whether this will go or worsen or develop into lymphodema in my left arm.

Does anyone else have any experience of this? Did it settle? Would massage of my breast help? Did it develop into arm lymphoedema?

Any advice would be appreciated.

2

I have Lymphodema in my breast which as of yet has not spread to my left arm. I am careful though and wear a sleeve quite often
Massage has helped a bit but the best thing is that I have had kinesio strapping for the past three months which has reduced it considerably. My breast nurse tought my husband to do it for me.It is a bit uncomfortable so I have developed a system of having one week on and one week off.

Jools

3

Hi Ostrich - sorry to hear about the lymphoedema in your breast.

Just to say, as well as the kinesio taping, which works realy well for some people, you can also get compression tops to help with breast/trunk lymphoedema. I have bumped up a couple of older threads from the lymphoedema board, which you might find helpful.

Hopefully you have now been referred to a lymphoedema nurse/clinic(?) and should be offered some help soon, manual lymphatic drainage, taping, compression top - or if you’re lucky, maybe all three!

Best wishes

X

S

4

Hi Bahons,

The surgeon didn’t do anything re referral or further advice/nurse etc. He just said it would settle with time when my boob/implant etc settles - ie its surgery related and will go away and as he said re the capsulation around my implant that we will look at things down the line and do anything we need to do when its had a chance to settle.

Is this right? Can it settle? Maybe its not lymphoedema? I’ve had it since the operation and its not worsened or improved.

???

5

Thanks for your bump of the thread re bras. I didn’t even think let alone know that you could get lymphoedema in trunk or breast, they only mention it in your arm at the hospital. Do you know of any sites where I can read a bit more about this rather than just rely on what the surgeon says? Worried because lymphodema could really affect my job or ability to do it if thats what it is or develops into. I know nothing about lymphoedema other than the tiny leaflet they give you post surgery but it seems it can be rather debilitating from reading a few threads on here.

do you think when I manage to get my arm movement back to full (didn’t exercise as much as I should) it will help settle my boob?

Argh, panicking now!

6

Just read the other thread about lymphoedema in trunk and breast. My new boob isn’t bigger than my other one, it was post surgery but now is in fact a bit smaller than my other one, its not painful and the marks only go as deep as the skin/underlying tissue - about a couple of mm so maybe it isn’t true lymphoedema? I don’t know about my trunk cos I have the big muscle under my arm and my back is still firm (as well as the wound being open) etc and basically my back/trunk are still a bit of a mess and difficult to reach with not 100% arm to know whether its acting normally or not (if you see what I mean). I am still only 1/3 through my chemo too so not sure how much this plays a part.

Am not going back to see surgeon until January. Shall I just wait?

7

Have just read BCC’s publication on lymphoedema and think I was kidding myself - I have it! Darn, drat, sh*t!!! Having BC and going through treatment is hard enough - why this? Its soooo downplayed when you have surgery etc, the lymph nodes are coming out - end of. I don’t think they do SNB at my hospital but I wasn’t offered it. Mind you I don’t know if it was my SNB that had the cancer so I suppose I should be grateful that I know about the lymph node because without it I don’t know that I would have gone for chemo. I just want to get my “active” treatment finished and then get on with my life (I suppose as if BC had never happened to me - being an Ostrich and all). I DO NOT need lymphodema in my life!!

The skin on my upper arm is dry and tight, the skin on my boob muscle under my arm is dry and I read that it affects the skin/surface tissue so the surgeon is right and my thinking its only a bit of surface swelling doesn’t deny it being there. I wonder if I measure my left arm am and then pm whether it will be bigger. I guess I thought my whole arm would swell up if I had lymphodema.

I am soooo fed up now. I am going to have to live with this boob that has dents in it by the end of the day AND has enlarged pores and darker hairs growing out of them (which apparently the surgeon says is due to the lymphoedema and I was thinking no more about as I guessed they would go when he said the lymphoedema would go) AND cope with the fact that my implant is capsulating!!!

Why did I ever go to the doctors about a lump. We were getting on fine together. Now look at my life! As soon as I think I can cope with something (2 inch ongoing hole in back the last one) something else comes along. This is messing up my whole life! Will I even be able to do my job? I loved my job and had only been in it 18 months and there are so many things I want to do in my new career and this might shut those doors to me sending me back into an office (which I had only just escaped from!!!)

I think I need to phone my BCN and try and see her to go through all these things rather than wait until January.

I HATE BC!!!

8

Hi Ostrich - don’t panic!

Lots of questions…I’m sure the exercises would help. Can you go swimming yet (probably not, re-reading your post)? - it’s really good for lymphoedema - worth taking it up asap.

Lymphoedema makes you feel like swearing, doesn’t it? None of us need to go through all this and then get saddled with the big L as well. If it’s any comfort to you I had a little chest lymphoedema four years ago, which did settle after some massage and wearing a compression garment for a bit. It has flared up a bit recently (chemotherapy again - taxotere - it has made me retain fluid all over), but normally I don’t have any problems there - just my arms, I’m afraid.

I think surgeons are good at surgery, not at dealing with lymphoedema. And you’re right, the risks of lymphoedema are downplayed disgracefully. It’s regarded as a trivial condition by many health professionals, who often see it as merely a vanity issue among patients.

One good place to look for more info’ is a new lymphoedema website (sorry, not allowed to post the full link) called ‘stepup-speakout’ (plus dot plus a three letter suffix which is not ‘com’). It has a special section on breast/truncal lymphoedema - and why they think it is becoming more common, which is interesting. Also, the american ‘sister’ site to this one ‘www.breastcancer.org’ has a lively lymphoedema board with lots of discussion (and useful links) on this topic.

It sounds like an excellent idea to get onto your breast care nurse straightaway and get the ball rolling for some help. The sooner you get it, the better the outcome will be. Lymphoedema can be debilitating - but it varies from person to person and very often how much help, treatment etc, they can access at an early stage.

Don’t understand the bit about about dark hairs being caused by lymphoedema - that’s a new one on me. Has this happened to anyone else?

Hope this helps - if I think of anything, else, I will post and/or bump some more lymphoedema threads for you. Don’t despair, help is available, tho’ it often has to fought (or paid) for. You may never get LE in your arm, altho’ it does sound as tho’ yours might be getting a bit puffy - it’s a good idea to keep it well moisturised and to gently rub the lotion in upwards, but not towards your armpit.

Bye for now,

X

S

9

Thanks S,

Unfortunately I can’t go swimming yet due to this blooming back wound. I cant even lie down in the bath and can only spin around quickly in the shower!

I am going to measure my arms this morning and later today to see whether there is any swelling.

Does it get worse, I mean could this be as bad as it gets for me (says she hopefully)?

I don’t know what he meant about dark hairs either, he said they had probably been there all along and the enlarged pores due to the lymphodema made them more visible. I knew my boobs pretty well and I DID NOT have dark hairs on them. The enlarged pores are only on the cleveage side where I think my implant is so I think he was just waffling cos he either didn’t know or thought it was too trivial to be concerned with. I get the feeling they think you should be happy you have a breast (of a sort) and the cancer is gone and that any other concerns are more like a lack of gratitude. I just want answers. I just wish I had known more before surgery, I may have just gone for an mx and pushed for SNB but then what good is it looking back and maybe the SNB wouldn’t have picked up my micro mets.

I almost dont want to know anymore at this stage as I feel overwhelmed by another thing to deal with on top of trying to get my back wound healed and chemo. My OH is determined to be utterly positive and can’t see why I am so fed up with having something else to deal with due to this disease and something else that will never leave me (scars inside and out, worries, a sort of breast).

I am waiting for my BCN to call me back so I can go and see her when I am at the hospital next week for bloods or the following day for chemo. I just hope she can help because they don’t do immediate recon here but I don’t want to go on a 40 mile round trip to see my other BCN at the hospital where they do do it and she’s always too busy.

You say not to rub the lotion towards my armpit - should I rub towards my shoulder blade/back of my arm?

Thanks so much for your advice and support, x

10

Hi there again, Ostrich

Trying to answer some more of your questions…lymphoedema varies from barely noticeable to very severe. Why it affects some people and not others, or some badly and others hardly at all, isn’t fully understood yet(although some risk/susceptibility factors have been identified). The earlier it is diagnosed and treated, the better and easier it can be managed (and the more comfortable you will be). Arm lymphoedema will almost certainly get worse if it isn’t treated, not so sure about breast/trunk lymphoedema - I think it can settle on its own, although you may need some help with it for a while.

Yes, I know what you mean about this ‘just be grateful for what we’ve done for you attitude’. There is a real head in the sand attitude about lymphoedema. When I first developed it 11/12 odd years ago, I got the impression that everyone (ie bcn, surgeon) was of the opinion it was extremely thoughtless of me! - and nothing to do with them as far as treating it was concerned.

As far as the lotion is concerned (I wouldn’t use anything perfumed), don’t rub it in vigorously and rub it in gently upwards - towards shoulder blade and back of arm sounds OK to me.

Don’t despair - lymphoedema is a pig, but incurable doesn’t mean untreatable, so don’t be fobbed off, will you?

Let us know how you get on. If you have any more questions, I’ll be glad to try to help.

X

S

11

Thanks, its so comforting to have someone to offer advice and encouragement. I have measured my arms today and will measure them later. I have an appt to see a BCN before my next FEC next week so will talk to her about it then. Still hoping it stays as it is and that the breast lymphodema may settle on its own - I will certainly be seeking as much treatment as I can to aid that possibility.

Thanks again, xxx

12

Hi Ostrich

Don’t mention it.

Glad you have an appt sorted for in the next few days - it’s good to get the ball rolling.

About measuring your arms…I wouldn’t do it twice in a day, or even every day. This is because we all swell up all over naturally as the day goes on (and some days we swell more than others, too), and sort of deflate at night. I would say measure your arms at the same time of day each time, but leave it a few days now, and then do it a couple of times before you see your bcn. And don’t forget that your dominant arm may well ‘normally’ be larger than the other one.

Ideally, a set of ‘baseline’ measurements should be taken before surgery, but this hardly ever seems to happen.

Take care.

X

S

13

Hi Ostrich

I use E45 cream on my arm and was told to rub it instarting from top of arm and working down arm with upward strokes (if this makes sense).

14

Thanks Lynni and S, wont measure my arm for a couple of days (if the lymphoedema is in my arm will it be bigger/vary?) and will go down with the cream in an upwards motion (I do know what you mean).

xxx

15

Yes, that’s a good point, Lynni, to do the whole arm and not just the bit that’s giving concern.

I think if you can get several sets of measurements, Ostrich, this may help to show (tho’ may not be conclusive) whether there is any kind of trend developing, size wise.

X

S

16

Hi Ostrich,

Sorry you’re having such a crap time.

I’ve just posted about lymphoedema and cellulitis.

The whole thing makes me want to scream, shout and swear - which is different from how I felt when diagnosed with breast cancer. I think it’s because the breast cancer was so terrifying I didn’t feel like swearing. The lymphoedema is so pervasive and unpredictable - but normally not life threatening - so I feel more angry about it rather than scared. I do swear a lot about it in my head!

Ask your BCN to refer you to the local lymphoedema service. Hopefully you will have one in your area.

Good luck and let us know how you get on.

Best wishes,

Rowena

17

Thanks Rowena,

Just read your post re your cellulitis, so sorry for you that you have to suffer that on top of everything else.

You just don’t think BC could = so many other things and that you will have so many constant reminders even if you never get a reoccurance or secondaries. I knew about BC, I knew what it could mean and what the treatments were, was suprised I needed a mx, didn’t know much about recon so went with the flow and now find myself discovering all sorts of issues I had never considered.

What is cellulitis and is it linked to lymphodema then or can it happen anyway? I only ask cos I have red, inflamed and irritated skin around large parts of my back wound and a bit along my under arm boob/muscle which a nurse friend said isn’t likely to be cellulitis as its only around part of the wound. I had really sore skin on my back and really red on Monday (though its gone down now but still red) and had a temp of 37.8 which has also gone down now.

I am seeing my BCN on Tuesday before my 3rd FEC so will be asking her then re local service - I hope there is one - I currently have to travel 20 miles away to see my surgeon which is a bind and am glad my chemo is in my home town - it’d be yet another BC pain in the ar*e to have to travel again!!!

Wishing you luck with your cellulitis and hope you get some answers and better preventative treament, xx

18

Hi Ostrich,

Cellulitis is ‘an acute spreading inflammation of the skin and subcutaneous tissues, characterised by pain, warmth, redness and swelling’. (From info on Lymphoedema Support Network website)

Anybody can get cellulitis anywhere but if you have lymphoedema you are at much more risk because your immune system which fights infection does not work as well in the areas of lymphoedema.

You describe redness and soreness around your wound which to me sounds more like a wound infection ( though that could be made worse if you have lymphoedema I suppose).

If you haven’t done so already I think you need to get your GP or a doctor/nurse from your hospital ward to have a look at the wound and the red sore areas, especially if you have had a fever. You might well need some antibiotics - especially as you are in the middle of chemo which reduces your immunity to infection.

I hope you can see someone who is able to help you with all your (completely justified) worries soon. All the best and let us know how you get on.

love, Rowena

19

Hi,

Went to see my BCN yesterday (or the one at my local hospital where I have chemo but where they don’t do immediate recon - I had to travel for that and couldn’t face the trip to see the BCN there) who told me that its too soon to be referring me to a lymphodema clinic and that I should continue to massage and be patient as it may well settle in my breast. She also said that the tingly feeling and hotish feeling I have been getting in my arm is probably my nerves mending. She didn’t even look at my arm or boob!

She said that most women that have it only know they have it because their arms were measured pre surgery and after otherwise it would be so minimal they wouldn’t know for themselves so not to worry. I bet the women who have arms like tree trunks would have loved to have been there and told her what they thought.

I was so fed up yesterday after a nightmare day re bloods the day before and seeing my Onc I just ended up crying about all my issues (wound, arm, puffy boob, 4 more FEC) and leaving feeling no better.

I then went on to have a nightmare time with my veins and could be looking at a pic line next time so have decided to shelve my arm and breast issues for now as I can’t cope with anything more right now and concentrate on getting through the chemo and getting my back wound healed.

xx

20

Hi Ostrich

What a disappointing response from that bcn. While I think she may well be right about the lymphoedema in your breast (mine settled quite quickly, but I was also given some MLD at the lymphoedema clinic at the same time and a compression top - which I seldom need any more now), I think it’s a bit off to be so dismissive about your arm, as it’s obviously worrying you.

When I went to Oz a few years ago for treatment for my lympheodema, the physios there told me that most women have some kind of swelling following breast surgery and treatment, but for the majority, fortunately, they either don’t notice or manage it with care, exercises and massage.

However, a large minority develop significant lymphoedema and the earlier it is treeated the better. The sensations in your arm may well be exactly what she said they were, but it seems extremely bad practice not to even take a look at you. You’re right, I’d have loved to have told her what I thought and I bet quite a few others here would, too.

I think you have made a good decision to try not to deal with everything at once, but to prioritise. I’m sure a PICC line will be a help and I hope your back wound settles down - your arm, too.

Take care

X

S