Forum Discussion
Breast Lymphodeama, Who has heard of it?
Hey girls,
Just wondering who has heard of breast lymphodeama and/or experienced it?
Not sure if you remember but I put up a post a while back about my concerns of recurring BC in my affected breast. Well this has been going on since Christmas.
I have seen my GP twice who also had a trainee student with her the second visit, my top dog chemo Oncologist twice (not his side kicks which was very unusual), various Breast Nurses, a Breast Surgeon at one of the major hospitals in Perth, I have had 3 ultrasounds and one mammogram since last October, various blood tests and a chest X-ray BUT still it has not been confirmed 100% I have breast lymphodeama.
One of the breast nurses I spoke to over the phone suggested it might be breast lymphodeama from how I explained it to her and from her experience. I had never heard of it before that day and I did a huge amount of reading during my BC journey. I didn't get to see that particular breast nurse when I went to see the Surgeon but the other nurses said that she would be correct because she was so experienced.
I am now at the point where I have been referred to a Physiotherapist who specialises in lymphodeama.
I had read up on Inflammatory BC and felt I had all the suggested markings for it to be that. My head kept saying impossible, impossible because you have not long finished all your treatment but every medical person I saw didn't seem 100% convinced aleit all the tests etc.......
My first indication that there was something wrong was the changes in my breast which started under the skin of the breast but on the opposite side to the surgery. Then I started to notice red marks forming in that area that didn't go away and were growing (still there now) and then there was the orange peel effect (has a special French name I think) noticeable and then the cording started to feel more like leather/sinuey under the skin.
Anyway just thought I would put it out there and remind you all to see someone in the medical field should you notice any changes in your breast just to be on the safe side.
I am running with the diagnosis of Breast Lymphodeama at present but there is always that horrible horrible nagging feeling called doublt sitting in the back of our minds.
Hope you are all doing exceptionally well and coping with your treatment as best you can and those post treatment are getting on and getting back to normality like this lil pink sister is striving to do.
Lots of love always, Mich xoxo
19 Replies
Hi mich X,
glad you made progress with the Physio, with help to drain the lymph. Neil Piller mentioned that, it seems, those that get lymphoedema perhaps have some issues with drainage, even before surgery. That explains, maybe, why someone can have 2 nodes out and get problems; while another can have 15 nodes out and no problem. The jury is still out on this.
It seems there is ongoing research and differing ideas even from the experts !
The issue of weight, overuse, (too heavy, repetitive, sudden, sustained ) infection, plus radiation all can make a difference, perhaps.
Vasodilation of bood vessels from severe, early, menopause symptoms, may have put extra pressure on my lymph vessels and as they drain into veins, so take it easy if you can, especially initially, until you adjust. Easier said than done.
Look at your individual circumstances and as Mich X says.. Do not give up. Keep searching for answers.
Hi mich X,
glad you made progress with the Physio, with help to drain the lymph. Neil Piller mentioned that, it seems, those that get lymphoedema perhaps have some issues with drainage, even before surgery. That explains, maybe, why someone can have 2 nodes out and get problems; while another can have 15 nodes out and no problem. The jury is still out on this.
It seems there is ongoing research and differing ideas even from the experts !
The issue of weight, overuse, (too heavy, repetitive, sudden, sustained ) infection, plus radiation all can make a difference, perhaps.
Vasodilation of bood vessels from severe, early, menopause symptoms, may have put extra pressure on my lymph vessels and as they drain into veins, so take it easy if you can, especially initially, until you adjust. Easier said than done.
Look at your individual circumstances and as Mich X says.. Do not give up. Keep searching for answers.
- Good onya.You will be an expert now. Tonya xx
Great info. thank-you, it really helps to know I am not alone.
My BC breast swells up if I over-do it. It looks about 2 sizes bigger than the other breast and I can't wear t'shirts without looking lopsided.
I have DD cups normally and like to wear underwire bras but find they cut in to my bc breast and leave red marks and furrows and become painful. Lengthening the straps doesn't help.
I went to the specialist bra shop and they had lots of mastectomy bras but nothing that suited the lumpectomy breast swelling issue. The aaahh bras don't offer enough support. Any ideas?
That is great Annie, thank you for that.
Lots of love, Mich xoxo
Hi Mich
Sorry to hear you're going through this hurdle -- when does it end?
I thought I would jump on here and let you know we briefly discuss breast lymphoedema in an article in a previous edition of The Beacon - check out issue 58, page 3 - http://www.bcna.org.au/news/beacon-magazine/beacon-archive.
Here's an excerpt:
Some women are surprised to learn that they can develop lymphoedema in their breast, as well as their arm, following treatment. The use of sentinel
node biopsy (the removal of the first lymph node that a woman’s
breast cancer may have spread to for testing) has reduced the rate of arm lymphoedema, because of the reduced number of nodes being removed. However, reports suggest that this technique may increase the risk of breast lymphoedema.I hope this helps. ~ Annie
Hi Mich
Sorry to hear you're going through this hurdle -- when does it end?
I thought I would jump on here and let you know we briefly discuss breast lymphoedema in an article in a previous edition of The Beacon - check out issue 58, page 3 - http://www.bcna.org.au/news/beacon-magazine/beacon-archive.
Here's an excerpt:
Some women are surprised to learn that they can develop lymphoedema in their breast, as well as their arm, following treatment. The use of sentinel
node biopsy (the removal of the first lymph node that a woman’s
breast cancer may have spread to for testing) has reduced the rate of arm lymphoedema, because of the reduced number of nodes being removed. However, reports suggest that this technique may increase the risk of breast lymphoedema.I hope this helps. ~ Annie
Thank you all my pink sisters, I honestly do not know what I would do without you. You have all been such a huge support to me through this whole journey and continue to be so as I am at a stage where I had hoped to pick up the pieces and move on which I am doing but with the occasional setbacks raising their ugly heads. As Tonya puts it so beautifully we keep getting these unwanted house guests. I do like that phrase lol
I have taken all the wonderful advice on board - thanks heaps Kathy and dawngirl for your advice and research and the links to follow this up further.
I am open to all your suggestions and advice and plan to work on this to get it under control and keep it under control. I think there needs to be more information out there on breast lymph. There is a lot of info on arm but nothing much mentioned in information that is out there on breast and as I can see from you girls posts it is also a major issue in our ongoing recovery.
It is good that we are able to through this website get the information out to some of the other girls who were unaware just like myself.
Onwards and upwards today and always. Fanx heaps girls.
Mich xoxo
Hi Mich - what a journey you are having, and you weather every storm with good nature and courage. I admire you so much. All the best on Wednesday with your Physio - will be thinking of you. Love, Michelle x
PS All the info on lymphoedema is great for the rest of us. Thanks, girls.
I agree, sometimes I have one breast that swells up in size a bit and around the back area of my shoulder blade, also abdomen and even my right leg can swell a bit, up and down; different from before BC interventions.
I do think it is really an " all body thing" and the sooner you get onto managing it ..the better.
I forgot to mention tight bra straps. I like underwire bras and contour cups, but I add extra length to strap at the back now and I think it is making a difference. Professor Piller mentioned tight straps on shoulder area as may consrict flow to ducts near your clavicle.
I have had a lymph massage too and it helped. I seem to manage myself now mostly, but it is good to know I can have laser and massage if needed.
The laser did help also with softening scar tissue, discomfort and any fibrosis etc.
I agree, knowledge is a good help in coming to terms with things and dealing with things.
A website Professor Neil Piller mentioned :
A Perth accredited practitioner on Lymphoedema for Mich x. I know how distressing it is to have these symptoms and feel dismissed and abandoned even. Do not give up. There is help out there and some of your symptoms may get better, as you understand and get techniques to help you. Good luck with it Mich x.
http://www.hfrc.com.au/services/lymphoedema-physiotherapy/
Kathy.
