breast lymphoedema

[katlen]

Hi, i've been diagnosed with breast and arm lymphoedema following breast cancer treatment and would love to hear from anyone else who also has breast lymphoedema in particular. There doesn't seem to be much information out there, and getting the right compression garments are a nightmare!

Katlen

[Jennymary]

Hi Katlen, I too have breast Lymphodema, this came after breast cancer treatment nearly 4 yrs ago, Lymphodema arrived 2 yrs ago. What compression garments have you been advised to wear, I wear a sports bra and use the 'bubble wrap' inside the cup, so at the end of the day I can actually see where the foam cubes have compressed the skin. I haven't found the diagnosis of Lymphodema too difficult, all nodes in right arm were removed during my surgery so I've always known it could happen, but I find it difficult discussing it due to where it is. Keep in touch and maybe we'll help each other, and others, through this x

[katlen in reply to Jennymary]

Hi Jennymary,

I've been under the lymphoedema clinic who have ordered several compression bras, all which don't fit well or provide good support which the lymphoedema clinic agree also. They've said they can't help any more so need to find my own one. My difficulties lie in my need for an E cup and i'm not the bog standard small, medium or large which is usually how bras are sold. I've tried the marks &sp sports bra which do come in bra sizes but i find I have to wear a hankie under the zip part as it digs in. The best i've been able to get are the Amoema 'Ester' bras but i've had to have a DD cup and go up the chest size. Still not great but the best so far. I've also been shown how to do the taping and massage. Nothing is really helpful and sleep is uncomfortable as i'm having to wear a compression bra to bed but suffer with the night sweats too.

I've been in contact and joined the LSN and I've looked into LVA treatment but can't afford the £20,000 needed. I've now asked my surgeon if I can have another reduction so at least I can source better bras. Surgeon was reluctant but agreed to discuss with her colleagues and let me know on the 8/8 but I don't think she will agree. I'm also suffering from sub-clinical lymphoedema of the arm and seem to have some nerve damage too and a chemo leak has also been mentioned. Quality of life doesn't feel great at the mo!! x

[Jennymary in reply to katlen]

Hi Katlen

In some ways you've fared better than me as I was left to source my own sports bras on the high street, may be worth trying John Lewis or Debenhams as that's where I've got mine from, I'm currently wearing a Shock Absorber bra, size 34ff, I've also had to buy my own Kinesic tape, but I have had some light therapy, massaging and taping through my clinic, good luck in your quest for reduction therapy x

[katlen in reply to Jennymary]

What make is yours? I would be interested in looking being it has large cup sizes. I've brought several myself already that haven't turned out any good - all adding up in expense too!

What do you do for sleeping?? X

[Jennymary in reply to katlen]

Shock absorber is the brand, if you look on the John Lewis website you'll find various makes of sports bras, I booked a fitting about 6 weeks ago there, told the fitter what I needed, she looked at what I'm currently wearing and said they were fine. With regard to night time I've never been advised to keep the bra on through the night so I don't sleep in it

[AnneBury]

If you have not already done so contact the LSN, Lymphoedema Support Network. They have a website with lots of information lymphoedema.org and a telephone help line (details on website).

[Chrissie2]

Hi Katien. You should definitely get in touch with the lymphoedema org. and/or your breast care nurse who should be able to a lymphoedema clinic. Hope you get sorted soon x

[Broomie]

Hi Katlen, like you I have it in my trunk and arm, because of damage to nerves during surgery I have chronic nerve pain and can't get reconstruction. Normal bras are only worn for very special occasions and taken off asap (thank goodness for large handbags lol). I was given compression vests, one in black and 1 white, not pretty but they really help, especially with the area around scar. I'll see if I can message you a photo of them, maybe your nurse can source/provide? If not I'll ask where my nurse gets them for you (I live in Scotland and offered to pay but was told its part of treatment plan, where are you?) I also get lymphatic massage every few weeks which gives massive relief.

Take care ❤

[katlen in reply to Broomie]

Hi Broomie,

I've tried several compression bras but yeah, if you can send me a photo to see if I haven't tried yours - pls

[e-mail]

I would have to pay for a lymphatic massage as they are no longer offered on the nhs here and they are about £60 a session i'm told. i've been shown how to do the massage myself which needs to be done on a daily basis.

Cheers x