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ANyone got breast lymphoedema?

16 REPLIES 16
alise
Member

Re: ANyone got breast lymphoedema?

Thank you so much everyone for all your kindness and support x x

norberte_1
Member

Re: ANyone got breast lymphoedema?

post deleted

alise
Member

Re: ANyone got breast lymphoedema?

Thank you so much for your replies x I dont know what's the matter with me.

Sandra I am so glad your mammo is OK. Mine was too and my ultrasound but for some reason I am imagining all sorts of awful things.

I just think its weird it appeared 5 years after surgery with no apparent trigger.

Thank you all again

With love
ALise x

sandra44
Member

Re: ANyone got breast lymphoedema?

Alise,hope you are feeling better today.Whoever told you that lymphoedema is a sign of cancer coming back just needs a good slap ! Lymphoedema happens as a result of having your lymphatic system messed with in our case and after surgery you have a lifelong risk of getting it. Mine kicked off 10 weeks after I finished rads,for others it can happen years down the line. People for some reason have different amounts of nodes,I only had 4 removed but if only had 10 in first place that would seriously compromise the draining ability of my system.

I had my two year annual mammo and check this week and initial view of mammo is everything is ticketyboo and I can get on with the next year of my life. I would suggest that you give the helpline a ring if you are still worried or want to talk things through as the ladies there are just lovely and wonderful and just seem to make things a bit better.Take care and big hugs for you.

Sandra x

wills1
Member

Re: ANyone got breast lymphoedema?

Hi Alise

Sorry you are so upset,I have never heard of lymphodema being a sign that cancer has returned. To my knowledge lymphodema can be a side effect of the surgery we have had. Im sure someone will be along soon with the medical knowledge to put your mind at ease. You could give Breast Cancer Care helpline a call as Im sure there would be someone there you could talk to.
Take care
Love and hugs
Karen xx

alise
Member

Re: ANyone got breast lymphoedema?

Girls please help im having a very bad day.

I have just read now that lymphoedema is sometimes a sign cancer is back!! I am trying to remain sane because I have had an ultrasound of the breast but now I am thinking do I need more tests? Wd an ultrasound and mammogram not have picked it up? Am sat here crying lease help.

Love to all
Alise

sandra44
Member

Re: ANyone got breast lymphoedema?

Well I had WLE and SNB with only 4 nodes out and I still got lymphoedema,however,did have a seroma which seemingly ups the risk level. Yup it is a pain to the nth degree. I had got my head round the cancer milarky yet ended up with an incurable condition ! Doesn't really sweeten the pill when you are told that it is manageable. However, all I can say is I have good days and bad days,sometimes I can go months and it is fine then all of a sudden it just "goes" and it's back to full time wearing of sleeve and I also have it in my boob and trunk for which I wear a hideous compression top.
There are different sleeves and glove combos that you can try but seems like us lymphoedema sufferers have to kick up a fuss all the time. I'm lucky that I do get MLD and it helps hugely but I also do the self massage which the lymph nurse showed me and that seems to help too.
I would have even been more peed off had it not been for the help info and support that we have in these forums so just shout if you want some advice.Good luck.

Sandra x

alise
Member

Re: ANyone got breast lymphoedema?

Thank you all so much for replying - its good to lnow we are not on our own!

The thing that REALLy upsets me is I was node negative so all my nodes came out for nothing which wouldn't have happened now. Please dont get me wrong I am so thankful I was node negative but the overkill surgery has left me deformed for life.

I am feeling a bit sorry for myself today - sorry everyone but it just never ever ends does it< I know its better than the alternative but breast cancer does seem to take over your life even years later.

Love to all

Alise x

Anthi
Member

Re: ANyone got breast lymphoedema?

Hello Alise

I had WLE and full node clearance in December 2006, followed by chemo, radiotherapy, Herceptin and now Aromasin.

In around April 2007 i.e. 4 months after surgery, my affected breast suddenly got bigger and felt warm and looked rather pink. I had it checked out and was told it was lymphoedema of the breast. I think I've got very slight lymphoedema in my arm too.

I had a course of MLD in November 2007 which helped only a little bit but I have to admit I haven't kept up with the exercises I was taught. These were a rather complicated series of 17 different types of massage which took about 25 minutes and needed to be done twice a day. I took copious notes about how to do them and did my best for a time but realised that I wasn't really making any difference and I believe the MLD really needs to be done by a professional.

These days I just live with it and accept that my breasts are a bit lopsided. My breast is moderately painful sometimes and more so after doing any heavy lifting. I know we're told not to lift heavy things with the affected arm, and I am as careful as I can be, but I live alone (and travel alone) and sometimes one simply has to lift things. I'm a bit sore today having come back from holiday yesterday and lifted my own case off the carousel as it was the last one to arrive and everyone else had vanished so there really was no-one around to ask for help.

I wear a blissfully comfortable elastic type of bra which makes me more comfortable and I also feel the need to wear something in bed so usually wear a secret support camisole which helps too.

Good luck everyone.
Anthi x

wills1
Member

Re: ANyone got breast lymphoedema?

Hi Alise

Yes I had full node clearance even though I had one lymph node affected. The nurse also mentioned to me today that I may benefit from using the tape as well. She has put a small piece of it under my bra strap to test for any alergic reaction. When I go tomorow she will see if my skin is ok and all being well we can also try the tape.

Best wishes
karen xx

Jan
Member

Re: ANyone got breast lymphoedema?

Sorry Alise I forgot to say that I think there is some sort of compression vest which you can get which is specifically for breast lympho. I don't know if you can get them on the NHS but it's worth asking.

J x

Jan
Member

Re: ANyone got breast lymphoedema?

Hi Alise

Yes I've had breast lympho since 2007 brought on by radiotherapy. I didn't have full node clearance but I had a large number of nodes removed. My breast is red and can be quite painful at times. I also have orange peel skin and the hard patches Laine mentions. My breast is also a full cup size bigger than my good breast although it does tend to go up and down and spreads under my arm too.

I have a partial prosthesis which I use on my good side to even me up and give me an equal cleavage. I found that, as my lympho was classed as 'mild', I had difficulty getting any help and so eventually I gave up trying and now take painkillers when I need them and otherwise put up with it.

One thing I have found which helps is swimming, I seem to have less pain if a go to the pool regularly, but I accept that isn't for everyone.

I hope you get it sorted. It is an unpleasant and painful condition.

Love to you

Jan x

devagirl
Member

Re: ANyone got breast lymphoedema?

Yes Alise I had full node removal. I dont think mine is partic red but I have got what they call peau d'orange skin cos it looks a bit like orange peel. There is also fibrosis ( I think) which is hard patches and the only advice I got for that was to exfoliate which I dont fancy doing. As I said, most of the time I am ok but lately its affecting me in that I get pins and needles/wrist pain so I dont know if its spreading to the arm, oh joy.

Laine x

alise
Member

Re: ANyone got breast lymphoedema?

Thank you girls for your helpful replies.

Can i just ask did you both have a full node clearance? I was one of the last patients to have a full node clearnce before sentinel node was brought in and app it is much more of a risk if you have had a full clearance.

I have been given kineso tape to put on it which is supposed to help but I dont think it is. It is also very slightly red - worse as the day goes on which they said is erythema due to pressure in the tissues - anyone else got that?

Love

ALise x

wills1
Member

Re: ANyone got breast lymphoedema?

Hi Alise

I have breast and arm lymphodema in fact I went for my first manual lymphatic treatment today. I wear a sleeve on my arm and the lymphodema in my breast is quite bad. I had surgery in August 2009 but the lymphodema started just before christmas (2010). The treatment was very relaxing and i could definately feel a difference in my breast after the nurse had finished, I have 4 more to go then I will see the nurse every month. I hope you are able to get some treatment and the symptoms become easier.
Karen xx

devagirl
Member

Re: ANyone got breast lymphoedema?

Hi Alise

Yes I have it and I had my op in 2006 - I have read that it can appear at any time, even after 30 years! Some days its worse than others, especially if I have carried heavy shopping or stretched to reach something or even after the way I have slept. I find it unbearable to look at to be honest. You can be assessed for manual lymphatic drainage at the hospital or go to a private practictioner but I havnt done this because I dont want any more medical intervention if it can be helped! There are many on this site far more expert than me on the best way to treat it but I dont know if it will ever go away. I was worried too at first as I thought it might be a sign that the BC had come back but its a seperate issue.

Best wishes, Laine

alise
Member

ANyone got breast lymphoedema?

Hi All

I had treatment for breast cancer in 2005 and in 2009 developed mild lymphoedema in my arm whih has been kept under control.

A few weeks ago my treated breast appeared to have swollen up and gone slightly red. After a day of hysterical panic I got in with my breast consultant who said it wasn't IBC which I feared but lymphoedema now appeared in that breast six years later!!!!!!!!!!!!! She said she has seen it before. Its quite a bit bigger than the other one. I had an ultrasound which showed all normal apart from this bloody swelling!!!

Has anyone got this after surgery? There is little they can do apart from tape it etc and Im SO fed up as I feel like it never ends!!!