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Lymphoedema in the breast tissue - help!

37 REPLIES 37
Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi Valderi

Sorry to hear you had such a lukewarm response at the hospital. 'Conveyor belt' is very true - there seems to come a point when most bc health professionals lose much of their interest in you - I felt sometimes a bit like an old toy that had been put to one side!

Is it a private therapist who is treating your arm? If it is, I'm sure she will be to help with the breast odema as well.

Good luck - let us know how you get on.

X

S

Valderi
Member

Re: Lymphoedema in the breast tissue - help!

Such a help to read all the posts. After end of radio, breast calmed down a bit but from Sept onwards has remained swollen and warm. On check up visit in December, registrar dismissive, said I could have antibiotics 'if I liked'!! Went back again today and was told it was after effects of radiotherapy, but no mention of lymph. Once you've fallen off the end of the conveyor belt, it seems they don't want to know. I've tried lymph drainage for my arm and that's worked well, so will see if she can help with the breast as well. Like others I know it's not as bad as some have to go through, but if only things were explained better I'd find it easier to deal with. Swimming sounds a good idea though if I can find a pool where no one knows me ...

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

bump for Sarah66

ostrich
Member

Re: Lymphoedema in the breast tissue - help!

Thanks for this one too, x

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Bumping this up for Ostrich....

X

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Hatts
Member

Re: Lymphoedema in the breast tissue - help!

Oh, just realised that Buff40 is a person! Sorry! Have found her thread.

Hatts
Member

Re: Lymphoedema in the breast tissue - help!

Bahons, what's the website for Buff40?

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Ummmm.....not sure!

I'm VERY tempted by the bras, tho'.

That black belt in shopping, you know.....gotta keep in training.

X

S

janneth
Member

Re: Lymphoedema in the breast tissue - help!

Just had a look at these, they look really good. Think I'll get me one in each colour. Nice and high under the arm, so you can put one of those litlle pads in with the knobbly bits - the ones that are supposed to massage the breast While You Work. Is that Kinesiology, Bahons?

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi Janneth

So glad you managed to get one and that it's working for you!

I just wish the NHS lymphoedema clinics would offer them instead of people having to ask - it's not as tho' one of these can be regarded as a luxury - or we're asking for charity handouts.

Buff40 has posted details of bra for trunk/breast lymphoedema in this section as well. I've had a look at the website and I think the bras look smashing. Maybe another option

X

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janneth
Member

Re: Lymphoedema in the breast tissue - help!

Hi Bahons,
I got one of those tank-top type bras from Marsden yesterday. it's brilliant! First comfortable day I've had since I can remember. I definitely wouldn't have been given one had I not asked specifically for it. Thanks so much, I wouldn't have known about them without you.
J
X

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Absolutely!

I have to keep up my accreditation for the black belt in shopping that my OH tells me I have.

X

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lyndu
Member

Re: Lymphoedema in the breast tissue - help!

Ah, so it lets you carry the plastic!

Lyn

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

So do I!

(Well not your husband, mine!) He introduces himself to all and sundry as 'just a lowly bearer', now.

I've actually also got a wee 'healthy back bag' that I can sling over my good shoulder, which means I can carry a few bits and pieces and the odd bit of shopping without risking my arms. It's been a godsend.

X

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janneth
Member

Re: Lymphoedema in the breast tissue - help!

Thanks Bahons, I'll give them a shout.

Have you ever shopped in 51 degree heat - a new dimension to shopping til you drop.

Besides, I've discovered from using the site that I'm not allowed to carry shopping. So I used my husband as a handbag.

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi Janneth

Hope you had a good time in Abu Dhabi (did you shop till you dropped?) and that your LE has recovered a bit from the flight.

What a shame Medi haven't bothered to answer your e-mail - have you tried ringing them on 01432 373500?

Just a thought, breastcancer.org - an american site - has a lymphoedema section on its discussion forum and it might be worth a look as I seem to recall that there have been quite a few threads about this particular form of lymphoedema over recent months.

X

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janneth
Member

Re: Lymphoedema in the breast tissue - help!

Hi Bahons,

just back from a trip to Abu Dhabi (hothothot) and the flights didn't help, that's for sure. I wondered if, in case of emergency evacuation, my right boob might qualify as an Inflatable Device.

My experience with the mammogram thing was very similar to yours. I told them i didn't want one, as I understood from my reading that having multiple mammograms had been found to cause breast cancer! They actually wrote to me from the hospital saying it was absolutely ncessary, ultrasounds don't show things up as well as mammogrms. So I went with it. To my regret.

The Mediuk people didn't reply to my email, so will try a different approach.
X
J

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi janneth

I was very interested to read your comment about lymphoedema and mammograms. Mine flared up in earnest shortly after I had an excruciatingly painful one done. I was yelling and weeping and I'm afraid the radiographer didn't give a toss. I am quite sure my breast was compressed far more than necessary (I've had ones before and since that were a breeze).

I've spoken to my MLD therapist and a lymphoedema nurse and they've both admitted it could have been the last thing my fragile and irradiated lymphatics needed. But the consultant was adamant how useful a mammogram was, so you go along with it, don't you? She said I could have another type of scan done next time, if I really felt that strongly, but the sub-text is that they use mammograms because they are cheap, so that's what they want to stick with.

Good luck with getting your Lipomed bra - any chance the NHS are going to chip in with the cost?!!!!!

X

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cazbeds
Member

Re: Lymphoedema in the breast tissue - help!

Hi, I was dx Sept 07, WLE and SNB then rads. I visited my GP last week because I had been suffering tenderness of the breast which started whilst on holiday in Spain 4wks ago. I thought it may have been down to my weight loss as other breast has started to deflate and the treated breast had stayed the same. I was send for a mammogram and app with the consultant. The lady doing the mammogram was lovely, she did it as quickly as she could and with the pain killers I'd taken before going it was bearable. Consultant told me the mammogram had shown only post operative tissue which was a great relief, he also said I had Lymphoedema of the breast and an app would be made for massage treatment. Having read these posts I can see that it was probably the flight that aggravated things.
Thanks this thread has been very informative.
Caz x

hotmint
Member

Re: Lymphoedema in the breast tissue - help!

Helo All just been to the BCN clinic and have been told that I have Lymphodema. Breast very swollen and painful. I immediatly came back to this site and as usual there everyone is ready with support. I am a bit down at the moment but I am being refered to the local hospice. Thanks everyone for the posts . Pat B

janneth
Member

Re: Lymphoedema in the breast tissue - help!

Gosh, thanks Bahons. I had a look at the websites for Medi Uk and for the Lipomed bras, and they look just the ticket. I've emailed MediUk and hope I'll get an answer soon.

Just a thought on the sports bras - I've used them right from the time I had the surgery, and although they give support, I think they haven't been much use with the lymphoedema, as I guess I wouldn't have developed it a year after my surgery if they were effective against the condition.

I have been thinking about how I could have got lympho in the breast in the first place, and I think I've narrowed it down on time to when i had a mammogram. Maybe the compression damages what little lymph drainage there is. Doc says treat the breast with care, then they put the squeeze on with the mammogram.
Like you, Laine, I just don't even look at it.
X
J

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi all

Have just dug out my old compression garments for breast/truncal lymphoedema.

They were both called 'Lipomed bras' and supplied by Medi UK (although like many compression garments,they are manufactured in Germany).

I do actually have a spare - the medium was too big for me - not because I'm a delicate little thing (I'm somewhere between a 12 and 14 and nearer the 14, if I'm honest), but because I have a narrow back (which makes my bum look big). I ended up with a small size. Consequently the medium one is virtually brand new and I'd be happy to send it to anyone who thinks it may help them. I think it would fit someone around the size 14 mark.

I have no idea if it is possible, via some kind of secure link/moderator interface to exchange the necessary info to enable me to send a parcel to another poster on this site. Has anyone else done anything like this?

Finally, I believe sports bras with their overall compression (to stop that certain bounciness) and smooth, seamless finish help some people with this kind of lymphoedema.

Floody, you're right, 'mono-boob' is a perfect description! If I'd needed somewhere to stand my coffee-cup, I'd have bought a picnic table....I have to admit I tended to wear the garment just round the house or kept my coat on when I was out with it!

Am away for a few days starting tomorrow - so please bear with me if you are interested in the 'lipomed bra' and don't get a speedy response....

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devagirl
Member

Re: Lymphoedema in the breast tissue - help!

Thanks Bahons - I know you are quite right about doing something about it but what puts me off is that the only lympho nurse in the area is quite a distance away, where I had rads. I swore I would never revisit the place - hopefully - as still have nightmares about it and altho the volunteer drivers were lovely I cannot bring myself to go down that route again. A wuss I know.
In October I have my yearly appt with con and she is a person who wont let me get away with wussiedom if she thinks I should seek help and I can see her insisting that I do go. In the meantime I shall try swimming. Trouble is, at the mo its not giving me any hassle so its a case of out of sight (yes it is cos I wont look at it) out of mind.
Love Laine

Topper
Member

Re: Lymphoedema in the breast tissue - help!

I have Lympho in my chest and Man Boob (dog ear flap) following a mastectomy June2007.
I had it taped by the Lympho nurse with Kineseo tape ( google it) which seemed to help. She gave me a massage sheet but I did it very half heartedly.

As BAhons2 mentioned the swimming works really well. I went on holiday in May, flew wearing the sleeve and swam every day... and it went. Although it is not so easy to go swimming at the moment I do swimming type movements... arms only... ha ha. around the house. (Mind the vases and ornaments). It seems to work for me and I currently have no problem with it.

Good luck

X

floody38
Member

Re: Lymphoedema in the breast tissue - help!

Hi all,

I also have lymphoedema in my right arm, right breast and in my armpit - i've been told that its known as trunkal lymphoedema. My lymphoedema nurse had no hesitation in giving me 2 compression garments (i refer to them affectionately as my straight jackets!!!). They are not the most attractiveof items and they make me look as if i have a mono-boob but they do ease the pain when im wearing them. I was told that i should never wear underwired bras and i cant wear my normal size as the swelling gets worse especially underneath my breast-lovely!

The nurse also gave me a list of things that i shouldn't do anymore - i just laughed when i saw it - i can just about wipe my own bum and that's it according to the experts! Life's too short im afraid and i live on my own so the chores still have to be done by me no matter what they say.

Maybe i'm just a rebe lol!!!!

Big hugs

Tracy xxx

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi Janneth - your lymphoedema nurse probably didn't mention the crop tops because their budgets are so tight. I only found out about them when a rep from a compression garment manufacturer told my local lymphoedema support group about them at a meeting! (I will dig out my old ones out and find out who made them, too and post the manufacturer's name on here. If you have arm lymphoedema, you're entitled to sleeves, so I can't see why you shouldn't be prescribed a crop top!). I also believe there are things called 'fillets' and special inserts which help to redistribute excess lymph fluid in the breast. Trouble is, all these things cost money and lymphoedema services really are at the end of the food chain when the funding's divvied up. It's worth asking, tho' - knowledge is power. I have also heard that some people have had some success with lycra sportswear/crop tops, wearing them inside out so the seams don't cut in.... I'll try and find out more about those too, and post again here. You're right, getting any kind of help for lymphoedema is such a struggle.....

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janneth
Member

Re: Lymphoedema in the breast tissue - help!

Thanks to all of you for your thoughts. It seems lymphoedema of the breast is not as unusual as i first thought. Like yours, devagirl, my onc is also very dismissive of it - I sort of felt it was a something/nothing and just mentioning it was like feeling sorry for myself (I don't). It is a bit offputting though when you wake up in the morning and one breast is lying flat and the other looks like it belongs to Pamela Anderson.
Hattie, please do let us know how it goes.
And thanks Bahons2. I will try and get one of those crop tops from the nurse. She didn't mention them though, when i saw her. Just said I could look on the internet to see if I could find a suitable bra. Trouble is, I didn't really know (and still don't) what to look for. Should it just be tight (all my bras are now - on one side). Or should it have wide straps? Or maybe just be large and ugly?
A hospice sounds like it could be a help. I wonder how you get referred?
Why does it all feel like an uphill battle that no-one is helping with?
J

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi Liz and Laine

Only you guys know how bad your breast oedema feels, but lymphoedema tends not to improve without intervention and is often aggravated by flying. In your shoes, I would be tempted to take as much help as you can get - the thought of having a mammogram on a breast with fibrosed tissue really makes my eyes water, and could only make matters worse, I feel! However, I have no idea if fibrosed tissue would affect the interpretation of the result of the mammogram

Liz - I'm sure your GP is a good person to approach for a referral to the hospice.

Laine - your onc's response doesn't surprise me - incredible as it may seem, by and large lymphoedema doesn't interest them at all. To them it's just a mildly inconvenient spin-off of cancer, not a long term painful and incurable condition, for the treatment of which they should immediately refer you to a qualified professional.

If either of you like swimming, it's really good for lymphoedema, no matter where it's found, and may help to ease the symptoms a bit.

Good luck, both!

devagirl
Member

Re: Lymphoedema in the breast tissue - help!

I have breast oedema - suppose thats the same thing? Its bigger than the other one but not so much so that it affects me wering a normal bra. The worst thing I find is that there are areas of fibrosis which are rock hard to touch and I dont know how that will affect future mammos? At my last onc appt he just shrugged it off as unimportant and to be honest, as long as its not life threatening or v painful I am just leaving it alone.
Did laugh tho Liz at the thought of it bursting on the plane!
Love Laine

lizziecee
Member

Re: Lymphoedema in the breast tissue - help!

Hi Bahons2 - many thanks for your response. As the breast is not painful, not sure if I should do anything about it. My Onc, who discharged me after chemo and rads 4 yrs ago, retired last year, as did my bc nurse, who was fantastic so I really don't have anyone to help with bc. Had my 5 yrly check up in Feb 2008, NED, but bc surgeon wants to see me again next Feb as I have some complicated health problems. Don't know who I would get to refer to St. Luke's...GP perhaps?

I am seeing my gastro tomorrow morning for results of recent biopsies on my oesophagus and terminal ileum, but don't think this is his sphere. Are there any problems in leaving the lymphoedema alone?

If my Crohn's gets sorted out tomorrow, I am hoping to go mid August on a long arranged trip to Spain, where we lived for 8 years in early retirement - 11 of us going to a friends' villa to celebrate my long suffering husband's 80th birthday. Some friends are coming from the USA and it will be a disaster if my gastro says I need urgent surgery on my intestinal strictures and I can't go. Could my boob burst on the aircraft? Easyjet will love that! Anyway, that gave me a chuckle!

Thanks again.

Liz.

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi Liz - PLEASE don't be put off by the word 'hospice'. A terrific amount of good quality lymphoedema treatment is carried out in them (saves the NHS money!). I've been treated at one for my lymphoedema and I know a lot of others on this site have, too. It was utter bliss compared to NHS lymphoedema clinics. Cleaner, quieter, les rushed, free parking (what's not to like?) - not a distressing experience at all. (MLD comes under 'palliative care' simply because lymphoedema is currently incurable).

X

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lizziecee
Member

Re: Lymphoedema in the breast tissue - help!

I got lymphoedema in my breast 3 yrs after dx, so have had it for 2 yrs. Asked bc surgeon about it at annaul check up, and if they have an MLD nurse at the hospital, which is a Breast Care Centre of Excellence. Couldn't believe my ears when he said: "no, but you can contact St. Luke's Hospice, they have one." Well, don't quite think I am ready to go to a hospice just yet. The breast is much larger than the good one, hotter to the touch, but not painful, so I have just left it. Got much bigger problems to sort out at the moment with a flare of Crohn's.

Liz.

Bahons2
Member

Re: Lymphoedema in the breast tissue - help!

Hi all

You can get garments to wear for lymphoedema of the breast. They look like little crop tops (and, considering how unsightly compression sleeves are, some are almost pretty) and you wear them instead of a bra and they help to ease this condition a bit with gentle compression. Your lymphoedema nurse/clinic should be able to tell you if you are suitable for one and perhaps order it for you.

I've used one myself and they are not uncomfortable. It would definitely be a good idea to wear one whilst you are flying (even if you're not wearing anything else!), I think, as the decreased cabin pressure is a high risk factor for lymphoedema. Do you already have a sleeve? If you don't you may need to speak to a lymphoedema specialist about getting one of those as well.

Good luck!

Hatts
Member

Re: Lymphoedema in the breast tissue - help!

Hi Janeth

I also have lymphoedema in my breast. I developed it in my arm about 6 months ago and have a sleeve. I have also had a bit of manual lymphatic drainage. I then went to see Prof Mortimer at the Marsden and he found that I had it in my breast and chest wall too! Like you my affected breast is bigger than my other but I never put 2 and 2 together to work out it was lymphoedema. I am going for an intensive course of MLD (every day for two weeks) and they may try bandaging. Not quite sure what that involves but it doesn't sound like much fun over the summer! Will let you know how I get on.
Hattie

lilacblushes
Member

Re: Lymphoedema in the breast tissue - help!

Like Granny I can't offer any thing but sympathy and a lol @ the flying naked idea ... I'm sure most ppl's husbands would be keen on the idea

janneth
Member

Re: Lymphoedema in the breast tissue - help!

🙂 Re the flying ; No, not intentionally. My husband is quite keen on the idea though

GrannyScouse
Member

Re: Lymphoedema in the breast tissue - help!

Ooh, Janneth!

You poor thing!! I didn't know you could get it in the breast itself! Flippin' 'eck. Sorry, got no suggestions, but wanted you to know that I'm really, really sorry and I hope you find some relief.

Do you usually fly naked then 😉

Good luck to us all.
xx

janneth
Member

Lymphoedema in the breast tissue - help!

Hi

Does anyone have some suggetsions for how to deal with lymphoedema in the breast itself?
It's 2 years since my lumpectomy + removal of only 4 lymph nodes. When i was having my followup examinations I found each one more excruciating than the last as the doctors prodded and probed the breast.
It was when I went for a bra fitting that the consultant said that my lumpectomy breast was much larger than the other that I realised something wasn't right. i saw the lymphoedema nurse at the Marsden who confirmed that I had developed lymphoedema in the breast tissue itself.

I wondered if it had come from the weight bearing exercises I was doing at the gym to try to combat osteoporosis from taking Arimidex. Talk about Catch-22!

She gave me some ideas for massage, but said if it didn't help, I would have to find a nurse ( I live in Brighton/Hove) who could do manual lymph drainage for me.
It seems to work on and off, sometimes there is quite a big build up and now the skin on the breast is that sore I can't easily do the massage.
I do fly quite often, should I be wearing something while flying?
Any advice gratefully received!