Questions from a concerned husband

[Hoochiedada]

You all seem so helpful I figured I would post some questions so I can better understand my wife's condition and possibly get some guidance (and reassurance).  My wife had the first signs of GM last May and the doctor's were initially concerned it was inflammatory breast cancer but ruled that out with a core biopsy.  The biopsy seemed to cause an eruption in the abscess which seems like a common reaction.   Things started to resolved themselves in the coming months with the inflammation significantly decreasing.  She recently had another flare up and the radiologist is now talking about cancer again although they were so certain this was not the case.  My questions are...is it common for the doctors to be confused as to the diagnosis?   They are going to put her on an antibiotic after they determine the type of infection so has anyone here had success with antibiotics or are they useless?  Any input would be appreciated as I would like to support my wife the best I can and make sure she gets the best care possible.

[JoJo45]

Hi again -

most of us have been tested (I was tested at Women's College Hospital in Toronto Canada (known for their excellent pathology department, and then had a retest at Harvard through a work program) - anyway we have been tested for every type of bacteria and fungus known to man (I know fungus sounds awful but most infections seem to be caused by one or the other) - the results are resoundingly that this is not something they can identify by test - meaning it may be bacterial, or fungal, but it is not something that the medical community has knowledge of - it is yet undiscovered

many women have been treated with a battery of antibiotic with very little if any result

an abscess in this case is, as I understand it, just a collection of cellular debris due to the autoimmune response going on in the breast -

I have written extensively before about drainings done by a radiologist to avoid progression of abscesses and spontaneous drainage, which I found much more painful and scarring than if I proactively managed with drainings done by a radiologist.

I will try to find an earlier post on that and re-post for you.

Jo

[Hoochiedada]

Thank you so much for your response.  Related to your comment about there usually being no bacteria or pathogens this is what they are testing for now.  They are trying to determine what antibiotic to put her on when they get the test results from draining the fluid, however, it sounds like they may not find anything treatable by antibiotics, right?  I am not asking you to make a diagnosis just want to understand what is common for this condition.  They are currently referring to it as an abcess.  I would like to take you up on your offer to provide more information on draining before it develops a break in the skin as this seems to be happening.  

[JoJo45]

Hi Hoochiedada:

It is really nice that you are so strongly present for your wife during this obviously terribly stressful time for you both.

Yes, very common for the surgeons and pathologists to not know what they are dealing with -- this is one of the most trying parts of this disease, I think many of us have wondered if we really have Inflammatory Breast Cancer, and obviously the risks involved are way too big to be played with.

So....couple of things just from a fellow sufferer (not med opinion), just my thoughts and knowledge with a little love cause I know this is awful stuff.

1) not at all uncommon to have recurrences of GM (I have had numerous), so your wife is not alone with that

2) I believe every case I have ever heard of with GM as far as pathology is sterile - the fluid is just pus...what the cells throw off during their immune battle inside your breast against whatever it is they think they are fighting (that is my low level interpretation) - basically auto-immune response by-product - there is no bacteria or other pathogens found in the fluid generally - however, a powerful skin antibiotic is sometimes given to avoid a secondary infection with the open areas on your wife's breast

I would encourage your wife to keep the area clean, to go in for drainings under ultrasound before an abcess develops to the point of breaking the skin (I can tell you more about this if needed), and she needs to quickly get a second opinion so that she and you both know what she is dealing with so you can make the best decision.  

Where are you located?  Perhaps through our network here we can find someone in your city centre with more experience with this disease.

wishing you and your wife all the best

JoJo