Hi all
Does anyone have any experience of truncal lymphoedema? If so, what were your symptoms/experience?
The reason I ask, is for about a month, I have had what looks like the start of a bruise around my shoulder blade. It's red and about the size of a 50p coin. It has not changed. I have been monitoring it.
At the beginning of the week I noticed a new red patch on my back, at the bottom of my ribs - its around the same height as my elbow. so this is a separate patch to that that is on my shoulder blade.
This new patch is vaguely pink, it does not look like a bruise. It looks like I have been slapped hard, or I have been leaning against something.
I don't tend to wear a bra unless I am out of the house. When I do it is a soft bralette. Sports bras are too tight and uncomfortable now. It is over 18 months since my last surgery so I don't need the support as much and it is unlikely to be caused by infection.
I am wondering if the redness is lymphoedema. I would not say there is any swelling and not really any pain. The redness is more pronounced at the end of a day, even if I don't wear a bra. Hence my thought about lymphoedema - is gravity causing fluid to pool?
How quickly does lymphoedema progress? I am due my annual mammogram in about 4-6 weeks. I am loathe to contact my GP as I have been back to the breast clinic twice in the last year with what has turned out to be fat necrosis with my reduced non-cancer breast. I felt very much like I was making a fuss over nothing and the boy who was crying wolf. So I thought I would wait till I have my mammogram and mention it there. However, I am also aware that prompt diagnosis can be important with lymphoedema.
I am pretty sure this is not recurrence and it is something like lymphoedema but don't want to ignore it or leave it too long to find things are harder to deal with. I am worried that the redness will not seem that much to my GP and they will think I am over reacting.
thoughts, opinions, experiences are all welcome. How is truncal lymphoedema diagnosed and treated etc. BTW I only had 4 lymph nodes removed all were negative. Is it possible for the lymphoedema to be on my shoulder blade and on the bottom of my ribs on my back.
Thank you
Hi Snookie1971
I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I've done a search in the group for previous posts which mention truncal lymphoedema but drawn a blank I'm afraid. Of course this doesn't mean that nobody here has had this, maybe just that they haven't posted about it.
Assuming that you haven't been discharged from the breast cancer clinic, and I'm guessing that's not the case as you're still having annual mammograms, then your BCNS should be your go to person for anything relating to your previous cancer diagnosis. Why don't you give her a call and talk through things with her and she might be able to arrange for you to come in to have it checked out.
I don't know how quickly lymphoedema progresses but I wouldn't leave mentioning it until your annual mammogram especially as the person doing that is unlikely to be able to assess you for lymphoedema.
While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Snookie1971
You are right that once treatment finishes we don't have any follow-up appointments. However, you shouldn't be discharged from the care of your breast cancer team until the end of your 5 years of annual mammograms.
Anything related to your breast cancer should be dealt with by the breast cancer team so do give your BCNS a call and tell her about your concerns. If she thinks that it's not related to your cancer treatment then she'll probably advise you to see your GP.
Let me know how you get on.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
