Worried IBC Help Needed

[Debbie225]

I have been having a slight reddness above my areola on left breast for about 8 weeks has some pain but seems to be gone now. Had a mamo ultrasound only found some cysts. I have seen 2 breast drs both did not think it was IBC however I continue to have redness with some slight swelling heres the strange part When I lay down for a period of time it goes away it does however return after I get up. Has anyone heard of this and if so is it IBC? Please I am drving myself crazy. I have to return to the breast dr and I am thinking about demanding a biopsy of the skin as I have read that this is one way of telling if it is IBC. Could this be some sort of circulation problem if it goes away after laying down. Any help would be appreciated since I am about to loose it. Thanks

[lizziecee]

Hi Debbie, sorry you are having this worry. I don't know if this will help, but I had something similar last year, I had invasive bc in 2003 - lumpectomy and all lymph glands removed.  About 9 months ago I noticed redness below my aureola (where the tumour was) and the breast was very swollen. I saw a bc surgeon (not my normal one) and she did a needle biopsy, mammo and ultrasound. I thought it may be ibc, as I am aware you can get both types of bc. She said the biopsy was clear, but I was not convinced.  A couple of months later, breast still the same, I had my annual check up with original surgeon and he noticed the redness and swelling. He said it was lymph fluid that was trapped in the breast (as it was unable to drain through non-existant lymph glands). I asked him if it could be ibc and he looked me straight in the eye and said "No."  The redness has gone, but the breast is still puffy. He told me to massage it with moisturising cream, into the middle of the chest.
The one thing I wish I had asked the female surgeon was to do a "punch skin biopsy), as advocated by the bc nurse on this sister site. I would ask for the punch biopsy, just to be sure. I understand IBC is quite rare, compared to the common idc or ilc types, and not many doctors have experience in diagnosing it. The punch biopsy will definitely show if it is idc.
Take care and hope all turns out well for you. It could be some kind of inflammation.
Liz.

[Debbie225]

Thanks so much Liz I have an appt with the breast dr tomorrow and I am going to ask her to do the biopsy. So massaging with the cream helped? But it is still swollen? Are you still concerend about IBC? I will keep you updated

[lizziecee]

Hi Debbie - glad I could be of some help. I would definitely ask for a skin punch biopsy rather than a Fine Needle Aspiration or Core Biopsy. Think that's where I made a mistake as too shy to ask - didn't want the surgeon thinking I was trying to tell my grandma how to suck eggs! The massaging has made no difference at all - when I look down on my breasts, the one that had the cancer is so much bigger and I can't even see the nipple as the aureole is also very swollen, with a big white patch around it. My own bc surgeon suggested, after my asking about manual lymph drainage, that the only place in Plymouth to do this is St. Luke's Hospice, where they have an MLD  trained nurse, but emotionally I am not ready to go there, just yet. It is not painful like lymphoedema in the arm, but is a niggling problem at the back of my mind. I do hope your biopsy turns to be B9 and some kind of inflammatory condition easily cured by antibiotics.
Take care, and I hope you will keep me updated.
Liz.

[Debbie225]

Thanks I will keep you posted. are you satisfied with his answer because if not maybe you should get a 2nd opinion never hurts. I have also read that the "punch biopsy" is not always correct if it comes up negative then there is still a chance that it is IBC it is just that it has not penatrated to the skin yet the only other way I believe if a surgical biopsy where they can take deeper tissue or a PET scan. I am going to talk to the dr about which biopsy to perform it would seem to me to do the surgical one to hopfully find out once and for all.

ps are you located in Mass.? here is my e-mail ***@****

[lizziecee]

Hi cyber friend,
no, I am not in Plymouth, Mass, USA,  but in the original area of  Plymouth - in Devon, England, where the Pilgrims first set off for the new world! However, we live across the water from Plymouth, in Cornwall, on the Rame Peninsular in an old Napeolonic Fort, built in 1840, now turned into apartments. It is like living on the edge of nowhere! I just hate it, but having a 78 yrs old disabled husband, who won't move, just have to grin and bear it. Our hospital is a hop,skip and jump away - a car journey to the car ferry, and a taxi to the hospital - takes one and a half hours each way, beyond which time we spend at the hospital. Takes us a whole day, but we do try to have a lovely lunch out in the City and drown our sorrows in a good meal and a botte of wine.

I'll write you privately, but in the meantime, want to tell you I have already had two bc surgeons' opinions as to the swelling in my breast - a female bc surgeon I had never met before my emergency appt made by my breast cancer nurse, and then some 2 months later my original bc surgeon, so don't feel there is anywhere else to go.I got Mondor's disease of my my right breast  after my dx, and that took a year to sort out - a really weird complication that had nothing to do with bc. My lovely local GP says I was born with a bad set of DNA - guess I now agree.

I had never heard of a punch skin biopsy until I made an enquiry on this BC site. Can only hope the core biopsy I had done was the correct one.guess I have to learn to trust my doctors, with so many complications with Crohn's and bc I am a little sanguine.

I have thought about getting a 3rd opinion (am I getting paranoid?)  We only have two dedicated cancer hospitals in England, one in the London area, The Royal Marsden, and the other up in the North West, at Manchester, Christies. I can't get to either of them without a long 6 hour drive or train journey and have nowhere to stay. .I really do have a lot of respect for and confidence in, my bc surgeon - he raised some $500,000 in the local community for a new breast care centre of excelllence in Plymouth, one of only 6 in England.  My local hairdresser, in a tiny village here, got bc a year before me, and raised some $2,000 with a charity morning at the local Scouts Hall. She has been brilliant in fund raising, but although two of her sisters have died recently of bc, won't discuss it with me when I go for my monthly hair cuts.She did however volunteer to come to my home to do my hair when going through chemo - I didn't need it as I had the cold cap, and it worked!  C'est la vie.

Hope all goes well for you tomorrow.Will be in touch.
Love. Liz.