Hi
I was DX with IBC in August 08. Had chemo, surgery and finished rads 4 weeks ago.
During the last week the area that was rads zapped has become more swollen and very firm to touch. I contacted the BCN who asked to see me today, and by chance one of the radiographers was with her.
They have both agreed that the area does look very swollen but do not think it is Lymphoedema which was my guess. They made all the reassuring noises i.e. don’t worry it could just be inflamation from you doing too much, or an infection; but have made me an appointment to see the surgeon next wednesday. Obviously I am now very worried - has anyone heard of this happenning before.
Andie
Andie - sorry to hear that you are having a new worry… {{{hugs}}} That is one of the worst things about IBC this constant worry…
Sorry i can’t really offer any advice about the swollen breast as lymphoedema would probably have been my first guess… It’s not that long since you finished rads so i don’t know if it could be something to do with that…
Love Theresa
Hi Theresa
As it happened while I was with the BCN this morning one of the radiographers from the hospital where I did my rads was on site so she had a look. Her opinion was that it did not look like anything rads related. My skin held up really well even for the 2 weeks after finishing when they say any problems should occur. This swelling has only really happend in the last week or so. I am hanging on to the thought that if they think I have been overdoing things I would have to agree with them. In the last 2 weeks I have made quilted patchwork bags for all the chemo nurses as a thank you for their kindness.That involved a lot of cutting and sewing, and in hindsight(a wonderful thing) I probably did too much with the at risk arm and side.
My hospital are very good at being on the safe side so I fully expect to be sent for tests next week, maybe even a scan. We have a holiday booked beginning the following week and come what may I am going. Tests will have to wait. 10 days really can’t make that much difference. As you can see I am a born worryer in fact I could have a Masters Degree in worrying!
Take Care yourself
Andie
Hi Andie
Your holiday can only be a good thing, especially if you’ve been overdoing things. I hope you manage to have some fun and put everything else in a big box at the back of your mind to be taken out later.
Jan
Hi Andie,
I haven’t heard of this before and would have assumed it was rads connected due to the post ‘cooking time’, but you’ve been told no. It sounds as though you have been overdoing it a little so lets hope it strats to improve as you rest up.
Let us know how you get on with the surgeons next week, and take good care,
Jackie x
Hello Andie
Sorry to hear that you have a bit of a scare going on at the moment, at least you are being seen quickly, hopefully it will be nothing.
I’ve always had a very puffy area where the side of my breast would have been, this has never gone down after 7 months since op. My arm in fact rubs against it and it drives me nuts, so I keep putting talc along my arm so the movement “slides”. I’m told this is normal and nothing to worry about, but when I still can’t wear a bra comfortably, I do worry (like we all do).
Take care, and good luck next week
Love Carole
Hi Carole
You seem to describe my side where the breast would have been exactly, and I have been unable to wear a bra with my shiny new prothesis because of rubbing.Also the arm which is still numb from the op has become numb and annoyingly sore.
Has your medical team given you any idea if if would eventually go on its own.
There is always someone here you lets me know I am not unique and have the same problems as everyone else. Thank you. I will let you know what happens tomorrow.
Andie
I have the lump at the side as well… and I still can’t wear a bra either…
Andie - hope it goes well…
I’m still waiting to hear the results of last week’s MRI scan… i phoned yesterday but they said - no word yet… but they would let me know once the consultant had seen them…
Theresa
Flippin heck, I’ve just lost a long post, blah!
Anyway, Andie hopefully as yours sounds similar to mine it will all be ok, I will keep my fingers crossed. I was a bra size 36/38 E/F and I somehow have a feeling that with larger breasts you are left with more skin that “folds” than when you are smaller. Is your scar area all dead flat? Mine isn’t, I still have 3 ripples like sausages, very firm and hard but I am by no means flat (which is what I expected). They continue to tell me it is all normal, and I am healing well.
Theresa, how is your breathlessness now, is it still as bad? I hope your MRI results are soon, and good when they arrive. I am still breathless and have a cough that doesn’t seem to want to clear up, but I think this might be Herceptin. I am off for no. 17 on Friday, and a heart check and I will go over everything once again - I bet they get fed up of me.
Good wishes to all, and lets get some good news all round eh?
Love Carole
Hi ladies,
Lovely day today 
Andie, how did you get on today?
Carole, I too have a persistent cough and runny nose. I wondered if they were due to the herceptin. I’ve never had hayfever but I think these symptoms are similar.
Hope our MI result comes through soon Theresa.
My scar is quite flat, with a small roll of flesh at the side. I think this is probably due to the cancer having attacked my skin before surgery. I guess they had to remove as much as they could, I know they thought they would have to skin graft to close the wound at one point, luckily they managed without.
Take care ladies,
Jackie x
Hope you visit went ok Andie?
Today I went to see my physio lady, I’ve been having massage of the scar, lymphatic drainage and stretching & manipulation of the shoulders since Dec.
I haven’t got lymphoedema thankfully, but she said today I do have cording. She stretched and we heard a “pop”, which she said is the cording, once it pops its ok. Strange, strange feeling and it hurt quite a bit, but it doesn’t seem to have made my arm any more painful.
Have any of you had cording? If so what were the exercises for it, I am doing my exercises every day but not sure if they’re the right ones for cording.
How is everyone else? Take care
Carole x
Hi everyone…
Still no news on the MRI… think i will go out tomorrow - that is bound to make them ring and leave a message… 
I did have cording at first - the weird thing is since i developed the lymphoedema the cording doesn’t seem anywhere near as bad… lol
I only have the one sausage under the skin lol
The breathlessness doesn’t seem as bad although i do still have a persistant cough… I can’t remember is I mentioned on this thread - when i went for my recent CT scan on my neck the lady doing the scan said that TAX is really notorious for long term side effects… We got on the subject as i have been having problems with my ears… they feel blocked 24/7 like when you have been on plane or have an ear infection… they pop all the time… She said that was a common TAX se… as is breathlessness, sore ribs and sore tummy… I think i am also developing tinnitus in my ears… Scared myself silly looking it up… as appareantly if the damage to little “hairs” in the ears is bad you can even end up with hearing loss…
Theresa
Hi Everyone
Well I saw the registrar today because the Surgeon was on holiday. He examined me and said it was a seroma!! Has anyone heard of a seroma 4 months after surgery. He drained it then and there and got out 2 very large syringes full of clear yellow fluid. He has given me antibiotics only to be taken if I need them because we are going away next week. Evidently because of the size of it, it could reform just like after surgery. The BCN will drain it if it needs doing.
The fluid has to be checked for infection and cancer cells which has worried me a bit. But he insists it is just to be on the safe side not because he expects it come back positive.
By chance I saw my oncologist who was curious why I was in clinic. She also said that seromas 4 months after surgery are unusual, and agreed that the fluid had to be checked just to be on the safe side. I will not get the results for 3 weeks.
I thought I would be flat after the MX but no. The non BC side has one sausage as you call it. Not sure how the BC side will sort itself out because of seromas after surgery and rads swelling and now the new problem it has not shrunk to 'normal’yet
Thanks for all your kind thoughts.
Theresa I agree that as soon as you go out of the door the phone will ring - that’s how it happens in our house. I hope you get good news.I will
try and will your phone to ring. We seem to spend all out time waiting for results and appointments
Take care everyone
Andie
We always seem to be waiting don’t we? I never had a seroma so can’t help I’m afraid with that, but fingers crossed that everything will be ok.
Theresa, you go out tomorrow and like you say they will ring with a message, its always the way isn’t it. Thanks for the reassurance about the breathlessness, I will mention it on Friday, the cough is more troublesome, especially at night tickling away. I’ve tried some cough mixture which didn’t help.
Anyway, take care all
Carole
Finally heard off the bcn… and the good news is the only thing the MRI could find was the duct ectasia that we already knew about… I’ve got an appointment to see the consultant again on the 7th july… I think i will still see about another mastectomy… especially if they want to operate to remove the milk ducts because of the duct ectasia… (the nipple is still inverted after the 2 weeks of antibiotics…) Just mentioned to the BCN about the genetic testing as well as I still havn’t heard anything off them and it has been 6 months since i was supposedly referred to them… She said I should certainly have heard off them by now - so looks like that referral has been lost in the system…
Theresa
Andie - hope that seroma fluid tests come back okay…
Theresa
Just seen that Shellyface has passed away…
God bless
Theresa x
Yes, very sad and so quickly too, since her dx. Only a couple of weeks ago doing the race for life too, what a lady. RIP
Lovely photo Theresa - do you feel as well as you look?
Hello ladies,
Off to my best friends wedding today so hope the weather stays dry
Andie, I didn’t have any seroma after surgery. Understand that they can need draining several times though. Have a lovely holiday
Good news re MRI theresa. Understand your reasons for asking about mast on other side.
I have asked about having my good side reduced as I do find prothesis quite heavy due to rads. My onc isn’t too keen on any kind of surgery for IBC ladies, though says no scientific proof that it could cause spread he is still hesitant. Must admit this put the wind up me a bit but I have asked for a referral to speak to the surgeons to see what they say. Obviously I need to take great care due to my skin mets, and won’t do anything stupid, but the more I think about it the more I think I will be happier/more comfortable with a reduction.
Carole, gosh that ‘popping’ doesn’t sound very pleasant. I hope the massage helps though. My blooming runny nose is driving me mad, cough not so persistent but still there.
Very sad news re Shelly, just seen the thread. Always makes my heart skip a beat.
Take good care ladies,
Jackie x
Hi Ladies
So sorry not to have reported back earlier. It has been quite an eventful few weeks.
The swelling proved to be a seroma which the surgeon drained.(4 months after surgery and 2 months after rads).He sent the fluid away for testing which made me panic. Fortunately it has come back with no evidence of either infection or cancer cells.He can give no reason for the seroma forming again other than - it happens sometimes.
We then went away on the laziest holiday we have ever had. On our return my husband was rushed into hospital with a suspected stroke. The fears were unfounded - it was just a massive infection which was causing all sorts of problems and he is home again. This week I had to have the seroma drained again and within 24 hours it had reformed. It doesn’t hurt it is just so very uncomfortable.
I have given in and asked to be refered to the hospitals councellor - I am really struggling at the moment and absolutely fed up with dissolving into tears at the most inappropriate moments. I can only go along and see what she has to say.
I hope you are all keeping well
Take Care
Andie