Hi just looking for a little advice, I don’t really have any swelling that I can see however since my surgery with ANC on the 17th Dec my underarm area tends to feel sort of full and I’m noticing it more. Shortly after my mastectomy I noticed that under the scar it was a hard and a bit lumpy - I thought this was normal, however I now think it may be Lympoedema as if I press it it stays in for a bit like there is fluid there. since surgery I have had the odd random pain in my upper chest area which has become a lot more painful in the last couple of days - feels like it hurts if I use the muscle too much or even just touch it with light pressure, not really sure how to describe the pain but it’s sort of sharp and spread out. Also when I wear my bra (hardly worn it as a camisole is much more comfortable) I tend to have some swelling in my lower chest area.
I had said to my BCN a couple of weeks ago that I was concerned but she just said that it’s unlikely to be Lympoedema as in my case the risk was in the arm? Reading the forums having it in the chest and upper arm area is totally possible so now not sure what to do, I don’t want to waste anyones time but am slightly worried.
I suppose I just want to know if it’s worth getting it checked or am I worrying about nothing?
Many thanks
Moonbeam
Hi Moonbeam
I have put for you below the link to BCC’s publication regarding Lymphoedema. I hope it helps. The helpline will be open tomorrow at 9am if you want to talk to someone about this, calls are free 0808 800 6000.
www2.breastcancercare.org.uk/publications/treatment-side-effects/reducing-risk-lymphoedema-bcc15
Take care,
Jo, Facilitator
Hi Moonbeam
I have lymphodema in breast and arm, tbh it dosent sound like the usual signs of lymphodema more like normal after surgery S/Es except for the bit you mentioned about the bra area, I have discomfort and swelling around that area caused by lymphodema, fingers x it may not be but best to get checked out just incase , good luck I hope it turns out to be nothing for you x
Thanks Lottie, hopefully I’m worrying about nothing but suppose the sooner I find out the better, think I’ll see if I can make an appointment with somebody tomorrow.
Thanks
Moonbeam
The pains may well be nerves regenerating. They will have stretched everything to get at your breast tissue, and undoubtably caused some damage. You will also have places where your scar tissue is attaching itself to the tissues around it, and this can cause problems. Try googling myofascial release for some information on what this is and ways of dealing with it. Good luck.
This may be way off-beam, but you might take a look at Cressida’s recent thread about cellulitis - she has had a terrible time, as it went undiagnosed for 4 weeks and she was in agony, but I seem to remember it started out with the kind of pain, in the same area that you are describing.
It might be a good thing to rule out cellulitis, if nothing else
Hi Moonbeam,
Very unlikely you have anything as nasty as cellulitis but, as Cybele says, I would ask them to rule it out, as the bit about it being painful to touch lightly is a slight alarm bell. Most likely it is lymphodema and/or a seroma (collection of fluid). You can have both at once. You can also get an infection in either. You can def get lymphodema in your upper arm/trunk without swelling in your lower arm. Never feel like you should not bother people. You have a serious illness and their job is to look after you. Ask them to look at it. Ask them about the possibility of an infection, including cellulitis. Ask for a referal to the lymphodema clinic. If you feel fobbed off, take a deep breath and explain to them that, whilst they see this every day, it is all new to you and you need it checked out. If that fails, then cry until they take notice.
Hope you get it sorted to your satisfaction, please post how you get on, xxx
Thanks everyone, went to see the GP last night and in my humble opinion she gave a very good demonstration as to why they are called General Practitioners. She proceeded to tell me that I’m the picture of health (after ruling out being depressed) and that there was no sign of Lymphoedema despite the nice fetching dents I had in my chest after wearing my bra all day… She also said I would only get it in my arm - really don’t think this is true and when I questioned it she could not answer. She only looked at my arms and said they look they same, and did actually admit there was a fullness to the chest on that side that wasn’t on the other, but still no sign of Lymphoedema!
After being told that I was the picture of health I asked at what point I should stop ignoring the full feeling under my arm and dents from the material against my chest, and she said oh I don’t expect you to ignore it whilst still telling me I had no sign of lymphoedema, and she could not explain why the top of my arm area feels full rand is worst in the mornings and evenings.
Sorry for rant but I really don’t think she knew what she was talking about, thinking of getting a second opinion 
Forgot to add that she also dismissed long air flights as having a chance to set it off, I asked as I’m going to floridia later this year.
Thanks
Moonbeam
Hi, when I thought I had truncal lymphoedema, I rang the BCN who called me in for a quick check, then referred me to the lymphoedema clinic. I would definitely get in touch with your BCN. ps my truncal lymphoedema is now pretty much under control.
Well I’ve just had a chat with my BCN again and shes’s still saying it would be in the arm, however she has agreed for me to get checked on Friday by a nurse practitioner who knows more about Lymphoedema so hopefully I’ll know more then.
I know that Lymphoedema usually is constant, however in the earlier stages it can go up and down, is this right?
Thanks again
Moonbeam
hi there, just popped on briefly - my advice is get specialist help as soon as is reasonably possibly - my lymphodema went from getting slowly worse to getting slowly better with specialist help. there is a new teaching aid for GPs from the british medical journal that was advertised on the LSN network which is called health unblocked …sorry am at work or would search for link - its a one hour tutorial for GENERAL prctitioners!!
best wishes
Well I’ve done a bit of research and I’m pretty convinced now, several web pages are saying very similar things, this is from one of them;
“Truncal lymphedema can present somewhat differently than lymphedema in the arms and legs, which may make it difficult for therapists or doctors to diagnose. Often pain and tenderness are the first signs, rather than visible swelling (although this may be a symptom too, of course). There may be a sense of fullness in the armpit, back, side and/or breast. Sometimes the affected breast may be larger than it was before breast cancer treatment. Visible indentations from bra straps or seams may be seen on the affected side, but not the other side. Other signs include a thickening of the skin or “pitting” (little pock-mark indentations) on the breast, chest, or back.”
Can’t seem to link the webpage on my Ipad
I have had the chest pain/tenderness, the fullness in the armpit and side and the visible indentations. Now I just need to convince them so I can get it treated…
Thanks everyone for your help
Moonbeam x
Hi Moonbeam, hope all goes well for your appointment tomorrow and that your nurse practitioner can either put your mind at rest or sort out some treatment for you. Hugs X
Hi all, thought I’d give a quick update, had a chat with the Nurse and she said that she thought I had a seroma and a bit of fluid in the skin due to the radio which apparently could take upto a year to sort out… Sometimes think they hear what they want to hear, she went on about about it getting worst through the day due to moving around etc despite me saying twice that the only time I didn’t really notice the full feeling was during the day - when I wear my bra as it sort of pulls everything into the body, she thought it got better over night, but it doesn’t it always feel the same if not worst first thing in the morning
Anyway she told me to leave it for a few months and to keep doing the arm excersises. This was of course after she said ‘well you know your body has gone through a lot, you’ve had chemo, surgery and radio’ to which I replied ‘yeah I noticed’ lol I know that wasn’t the most helpful comment on my part! They seem to get hung up on the radio causing swelling however I never noticed any increased swelling with the radio, I’ve had these problems since surgery.
I’m going to try and be good and stop worrying so much, if it turns out to be lymphoedema in a few months I’ll get it sorted, it’s just annoying that I have to wait so long. Although I may not have to as my arm has been aching which I believe is some times the first sign of lypmhoedema in the arm…
O.K I’ll stop worrying now…
Now where on earth is that worry off switch?..
Unfortunately, we all have to come to terms with worry after a cancer diagnosis. There isn’t an off switch, but you can throw a towel over its cage and make it shut up for a while.
You don’t sound reassured by your appointment today, and it looks as though the nurse you saw may not have been a specialist. Why not see if there is a specialist service near you and try to get an appointment. You may not have to go private (there are charities, NHS and private ones listed), and you may be able to get a referral from your GP if you don’t want to go through your BCN. You may have lymphoedema, but you may not. Best get it checked out by someone you feel you can trust.
http://www.thebls.com/directory/ lists what it available in your area. It seems to be reasonably up to date.
Hi Sdfmeg, I wasn’t really reassured today however no one else appears to be concerned so maybe I’m just worrying about nothing, so at least for now I’m going to try and throw a towel over the cage for a while and enjoy the time I have without any treatment, will keep an eye on things in the back ground sort of thing. I have saved the link though incase I need it at some point.
Many thanks for your support 
Moonbeam