Newly dx with lymphoedema, what should I expect???

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21

Good luck Kelly,hope everything goes ok and you get sorted. Let us know how you get on.

Take care

Lynne x

22

Really pleased to hear you’ve been given an appointment so quickly, Kelly.

That is excellent news.

X

S

23

Thanks for your support as ever ladies, I will be sure to let you know how I get on,

Take care and enjoy your weekends,

Kelly
-x-

24

Hi all,

just a quick update…I saw my ps for the first time today. On examining me he said that I have 2 areas of lymphoedema on my chest! I had suspected that may be the case but was still dissappointed when he confirmed it! He also noticed that my arm was still very swollen, just as I had started to think it was going down!!

I spoke to my bc nurse earlier and she said to get my chest area checked out when I go to the lymphoedema clininc on monday. Not sure what they can do about lymphoedema in that area, any ideas?

Take care,

Kelly
-x-

25

Hi Kelly

You might find it useful to have a look at the BCC lymphoedema booklet, it has lots of information in, which you may find helpful. If you would like a copy follow the link below:-

breastcancercare.org.uk//docs/bcc_lymph06_0.pdf

I hope you find this helpful.

Kind regards
Sam (BCC Facilitator)

26

Hi all

I have just been diagnosed with lymphoedema this week. I was devastated as I have been doing everything to protect myself and only had my surgery in April and finished rads in July. I am not overweight and do all my post surgery exercises several times a day. My GP thinks it is the rads that have started it off. It doesn’t make it any easier to come to terms with. I see my oncologist on Thursday so I will see what he has to say.

27

Hi all

Kelly,you can get garments to wear for lymphoedema of the breast and round the back They look like little crop tops (and, considering how unsightly compression sleeves are, these are almost pretty), you wear them instead of a bra and they help to ease this condition a bit with gentle compression. When you have your appt on Monday, your lymphoedema nurse/clinic should be able to tell you if you are suitable for one and order it for you - you may have to ask specifically - they don’t always offer these to patients as a matter of course. The ones I’ve had are called Lipomed and they are made by MediUK.

As I say, I’ve used one myself and they are not uncomfortable, although they do produce what one lady on here has described as a ‘mono-boob’ shape! Hope this helps.

Cora - really sorry you’ve been let in on what has been described as ‘breast cancer’s dirty little secret’. Radiiotherapy is thought to increase the risk of developing lymphoedema from about 6% (from surgery alone) up to about 36%, depending on the area targeted, ie, a six fold increase in risk. Your GP is right, I feel.

The last lot of post sugery exersices I was given was about 4 years or so ago and I think the emphasis then was on restoring mobility and not lymphoedema prevention, although I’m sure they are beneficial for lymph flow, too Lymphoedema is a beastly lottery that follows breast cancer. It’s very cruel.

I hope you get a prompt referral to a lymphoedema clinic/nurse and also some active intervention.

X

S

Good luck! all

28

I would just like to thank Bahons2 for your information I will bare this in mind. Its good to have someone to turn to when you have a problem, and this site is certinly good for that, there always seems someone willing to help. Thank you once again.

Sorry to you other ladies who find you have this problem.

Angela

29

I second that, because of Bahons2 advice I saw a lymphodema nurse immediately. That was about four weeks ago.

I have already had a follow up appointment and my arm had reduced from 32%to 21% I have worn my sleeve every day particularly through radiotherapy.

She said that the fact that it had reduced through radiotherapy was a good sign.
Our bodies have taken such a battering through all cancer treatments,this causes confusion to the lymph nodes, and as everything settles down hopefully things will improve,

Next time I see her in December she will show me how to massage,… chest area far too painful to start yet!!

Take care,
Jan x

30

Hi Jan

What good news! Reducing the size of your arm through radiotherapy is a fantastic achievement - I do hope it continues and the signs are really promising, aren’t they?

I had breast oedema for a while after radiotherapy and it settled down ever so well (ie virtually disappeared) after I had some MLD and wore a LipoMed compression bra thingy on occasions when I really felt the need.

X

S