Aa
GF was just diagnosed. How serious is this disease?
Hey there,
My GF was just diagnosed on Tuesday with this.... "marked inflammation with granulomatous features and focal abscess formation". So it has already developed an acscess....
We have NO IDEA what we are up against.... What type of doctor does she need??? right now her GP is treating her but this is the same dude who originally told her it was a cyst not to worry..... and considering hpw rare this thing is I am concerned....
How serious is this disease? Can it be fatal? Is the worst thing that can happen is she will loose her breast?
How many of you have had a masectomy?
My GF was just diagnosed on Tuesday with this.... "marked inflammation with granulomatous features and focal abscess formation". So it has already developed an acscess....
We have NO IDEA what we are up against.... What type of doctor does she need??? right now her GP is treating her but this is the same dude who originally told her it was a cyst not to worry..... and considering hpw rare this thing is I am concerned....
How serious is this disease? Can it be fatal? Is the worst thing that can happen is she will loose her breast?
How many of you have had a masectomy?
Rash or lesion type symptoms have been described by others on the board
You and your girlfriend really need an expert to give you a definitive diagnosis and then you can get your head around that and move forward
As you know, GM is thought to be in the realm of the autoimmune diseases: Sarcodosis, Wegners, Tuberculosis -- Lupus is also autoimmune, I was tested extensively for all
Most of us here, although we have symptoms have not been formally diagnosed with any autoimmune diseases
I hope you get in to see the Rheumatologist, GM specialist (at least phone consult with your breast specialist) asap
Wishing you all the best
You and your girlfriend really need an expert to give you a definitive diagnosis and then you can get your head around that and move forward
As you know, GM is thought to be in the realm of the autoimmune diseases: Sarcodosis, Wegners, Tuberculosis -- Lupus is also autoimmune, I was tested extensively for all
Most of us here, although we have symptoms have not been formally diagnosed with any autoimmune diseases
I hope you get in to see the Rheumatologist, GM specialist (at least phone consult with your breast specialist) asap
Wishing you all the best
Thanks JoJo,
OK wow.... now my poor GF has a bizarre lesion that appeared out of no where on her back?.... its not exema but looks similar, she has pretty severe joint pain on her right side and I am thinking perhaps this GM is "lupus" related.
We will definoetly get in touch with this specialist..... thank you so much!
Keston
OK wow.... now my poor GF has a bizarre lesion that appeared out of no where on her back?.... its not exema but looks similar, she has pretty severe joint pain on her right side and I am thinking perhaps this GM is "lupus" related.
We will definoetly get in touch with this specialist..... thank you so much!
Keston
her case at this point sounds much like my early case and symptoms
much 'burning' in the breast, much moving around of the mass...very 'unwell' overall feeling
don't know of anyone in the bay area, but we have someone who seems interested in becoming an expert, she is currently managing or consulting on 12 cases -- you might ask your referred breast surgeon to consult with her or you might want to contact her directly - I think as much info as you can get, is the best way to manage this, at least pyschologically, which is a huge factor in this disease
http://depts.washington.edu/gim/faculty/laya.htm
the women seeing this doctor seem happy with her care, although definitive direction or answers is just not anywhere to be had
Best of luck, Jo
much 'burning' in the breast, much moving around of the mass...very 'unwell' overall feeling
don't know of anyone in the bay area, but we have someone who seems interested in becoming an expert, she is currently managing or consulting on 12 cases -- you might ask your referred breast surgeon to consult with her or you might want to contact her directly - I think as much info as you can get, is the best way to manage this, at least pyschologically, which is a huge factor in this disease
http://depts.washington.edu/gim/faculty/laya.htm
the women seeing this doctor seem happy with her care, although definitive direction or answers is just not anywhere to be had
Best of luck, Jo
Hi JoJo,
I am sorry... I forgot my password and had trouble signing back on... so I created a new sign on...
We live in the San Francisco Bay Area....
Right now my GF is on antibiotics... we are not sure what they are doing for her. She has significant joint pain that seems to move around, fatigue and buring sensations in her breast. We are getting referrals from her GP for a rheumatoid and breast cancer doctor, but the lump (abcess) that she has changes shape constantly, is hard and solid and cannot be drained. Sometimes it feels like it is getting smaller then other times it feels like it is coming back. Its not SO bad as she at this point as she does not have bursting abcess'es or anything like that, so we are waiting it out and hoping it goes away.
She has a very good mature attitude towards it... if it doesnt go away... she does not want to be on steroids or methotrexate for extenuated periods of time (She is only 29 though,)She says she is not SO attached to her breast that she will jeopardize her quality of life.... (if it gets too bad) .... I am really proud of her, she is pretty darn amazing!
Would love to get any information you ahve on specialists in the Bay Area....
I am sorry... I forgot my password and had trouble signing back on... so I created a new sign on...
We live in the San Francisco Bay Area....
Right now my GF is on antibiotics... we are not sure what they are doing for her. She has significant joint pain that seems to move around, fatigue and buring sensations in her breast. We are getting referrals from her GP for a rheumatoid and breast cancer doctor, but the lump (abcess) that she has changes shape constantly, is hard and solid and cannot be drained. Sometimes it feels like it is getting smaller then other times it feels like it is coming back. Its not SO bad as she at this point as she does not have bursting abcess'es or anything like that, so we are waiting it out and hoping it goes away.
She has a very good mature attitude towards it... if it doesnt go away... she does not want to be on steroids or methotrexate for extenuated periods of time (She is only 29 though,)She says she is not SO attached to her breast that she will jeopardize her quality of life.... (if it gets too bad) .... I am really proud of her, she is pretty darn amazing!
Would love to get any information you ahve on specialists in the Bay Area....
Tinker -
I ask what city you are in - in case we have someone else being seen by someone experienced in that city, not to be nosey.
I hope things are going well - and if you feel comfortable, let us know the location.
If you have any more questions, etc. we can help or point you to most recent research articles.
Jo
I ask what city you are in - in case we have someone else being seen by someone experienced in that city, not to be nosey.
I hope things are going well - and if you feel comfortable, let us know the location.
If you have any more questions, etc. we can help or point you to most recent research articles.
Jo
I think its awesome you are being so supportive and interested in your gf care. I know from experience that having a supportive bf is so helpful mine has been amazing from the beginning and it means so much. This is a hard disease to deal with but having good doctors are key I recommend a breast specialist and rheumatologist. We are here if u need anything this group is the best!
Hi Tinker:
A core biopsy is needed to rule out inflammatory breast cancer, which is generally what GM is confused with and vice versa, while many feel that the less disturbing of the breast the better, this is necessary so not to start worrying about
GM can be a very serious disease, it can also be self-resolving without any intravention, one of the great riddles of this disease
Hard to know what will happen in your own case, and therefore hard to know how to approach, however your symptoms guide you - a GM breast is generally very painful and symptomatic (redness, heat, inverted nipple, granuloma masses in the breast, sinusing or draining of inflammatory debris (pus), etc.
I believe your GF should be under the care of a breast surgeon at this point, to ensure the biopsies have been done correctly and an accurate diagnosis is made
Very often GM is treated with corticosteriods and or methotrexate or other strong anti-inflammatory medications, therefore it is best to get a skilled rheumatologist lined up as they are the experts in these drugs and should oversee any drug course
are you in Canada or US, what city?
I hope your GF will have a mild, self limited case.
Jo
A core biopsy is needed to rule out inflammatory breast cancer, which is generally what GM is confused with and vice versa, while many feel that the less disturbing of the breast the better, this is necessary so not to start worrying about
GM can be a very serious disease, it can also be self-resolving without any intravention, one of the great riddles of this disease
Hard to know what will happen in your own case, and therefore hard to know how to approach, however your symptoms guide you - a GM breast is generally very painful and symptomatic (redness, heat, inverted nipple, granuloma masses in the breast, sinusing or draining of inflammatory debris (pus), etc.
I believe your GF should be under the care of a breast surgeon at this point, to ensure the biopsies have been done correctly and an accurate diagnosis is made
Very often GM is treated with corticosteriods and or methotrexate or other strong anti-inflammatory medications, therefore it is best to get a skilled rheumatologist lined up as they are the experts in these drugs and should oversee any drug course
are you in Canada or US, what city?
I hope your GF will have a mild, self limited case.
Jo
Ah... thank you Pandora....
We were told the lump/abcess cannot be drained because it is "solid"...? we did have a needle core biopsy because they originally thought it might be BC. The biopsy showing the abcess was done a week ago.... :(
We were told the lump/abcess cannot be drained because it is "solid"...? we did have a needle core biopsy because they originally thought it might be BC. The biopsy showing the abcess was done a week ago.... :(
Wow! That is a loaded questions. Sometimes it is VERY serious. Sometimes it is just there. It is life altering. It can be managed. That is the truth we hang on to. Your girlfriend will have to educate herself. You will have to be very supportive. AVOID letting anyone cut into her breast for any reason. Have the abcesses drained by a radiologist using ultrsound guidance when possible. You have about a 2 day window after you notice an abcess, give or take. I have gone in and they have not been able to see any fluid...so I do nothing.
- An anti-inflamatory diet is helpful.
- A Breast Specialist is good for the draining and testing. Has she had a biopsy? try to get away with out one, or with only one. If the drain the abcess they can use the drainage to confirm the diagnosis. Biopsy's are prone to infection and take a long time to heal.
- A Rheumatologist is recommended since this is an autoimune related dis-order.
- List other symptoms (joint pain, fatigue, depression, itching...)
- Sleep - seems obvious, however if she has poor sleep habits, healing is less likely.
This IS a manageable condition, it can't be "cured," and won't go away for a while, but you CAN learn to live with it. There are worse things you could get. However, when the abcesses flare up...you are sure this is an inner circle of Dante's Inferno.
- An anti-inflamatory diet is helpful.
- A Breast Specialist is good for the draining and testing. Has she had a biopsy? try to get away with out one, or with only one. If the drain the abcess they can use the drainage to confirm the diagnosis. Biopsy's are prone to infection and take a long time to heal.
- A Rheumatologist is recommended since this is an autoimune related dis-order.
- List other symptoms (joint pain, fatigue, depression, itching...)
- Sleep - seems obvious, however if she has poor sleep habits, healing is less likely.
This IS a manageable condition, it can't be "cured," and won't go away for a while, but you CAN learn to live with it. There are worse things you could get. However, when the abcesses flare up...you are sure this is an inner circle of Dante's Inferno.
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