GM treatment

[barbados95]

Hi everyone,
I have just been to see my new consultant after being diagnosed with gm last week. As I expected, he had started me on high dose of predisolne.  He has said that he prefers to give 3 week burts of the predisolne for less side effects.  He said he does not think that antibiotics and drainage work as well as the cortisteroids.  He has treated 1 other patient with this condition. He also has said that he believes that mastectomy is not a cure. I have been tested for TB. Does anyone have any thoughts on all of this.    

[Firous]

Hi, My wife already undergone 4 surgeries. Abscess came one after the other and forth one exist while other two are in the filling process.

No single reports shows and indication of what it is. However now the consultant recommends to remove the breast and later to re-construct. But no proper diagnosis of any and now it was told as IGM.

neither me nor my wife convinced of removing the breast completely for no reason and I am still hunting for expert advise.

[Shells71]

Hi there, joined this group today. Have been suffering with GM in my right breast since the beginning of November last year and was finally diagnosed mid January this year after 6 weeks worth of biopsies!
I am having constant bursts of drainage
through one of the biopsy scars and was diagnosed with GM in my left breast last
month. When it first manifested itself it literally came up over night and my breast was swollen like a melon, but there wasn't any definable lump. 2 weeks ago I had 2 solid hard lumps come up in it and have been having a lot of pain, my doctor has swabbed it and waiting for the results.
I really don't know how much more of this I can handle and I'm seriously considering pushing for a mastectomy. I am also concerned that if left it could turn cancerous.  I just wanted to say thank you so much for setting up this group, although it's the first time I've posted, I have visited this site many times over the past year and it's help keep me sane! It's also nice to know your not alone xx

[Tara7777]

I was diagnosed with IGM after 5 straight breast surgeries within 3 weeks. I tried the prednisone treatment and thought I would go crazy. Lots of side effects with steroids, ex: crazy dreams, anger issues, insomnia. I finally went to Duke University Hospital and met a great breast specialist.  Dr. Shelley Hwang is absolutely wonderful. I ended up having a double mastectomy which ended all the abscesses because every bit of breast tissue was removed. I am having reconstruction surgery later this year when I am ready. Only bad thing as a result of so many surgeries within 3 months period, and I had 6 surgeries, is I experienced a Pulmonary Embolism in my right lung that has not been a pleasant experience. I am still on Coumadin and will take it for a total of 6 months. Was the mastectomy worth it? To me yes. Nothing would slow down the disease and I has 6 abscesses on the right breast that were cleaned out in surgery before docs knew what I had & both breasts kept developing them. Pain was unbearable. No pain now...bur no breasts either. I'll tale the no breasts and have reconstruction later. Just happy to know that its gone.  

[Pandora1962]

Do you ever get the feeling nobody wants to touch this with a 10 foot pole.

[barbados95]

Hi Jo
I got the feeling that he doesn't work in partnership with the patient rather than to treat as to how he sees fit. I've read alot about this already but because this is the first time I'm being treated, then I will give his method a go and see how I get on.  What I was confused at was that the breast consultant referred me to him (he is in general medicine but has already treated a patient). He said that he is now going to refer me back to the original breast consultant for future care. This doesn't make sense.
Julie

[JoJo45]

Hi there -

he has treated one other patient yes, but here we have 56 patients

that said, he is a doctor, I am not and I do think you should listen to what he is telling you, and if not happy, find another doctor to listen to, and be prescribed care

this forum is for sharing, not for taking on the role of physician, but I very strongly believe that we have to be informed and advocate for the best care possible with this disease because so little is known, and frankly some of the caregivers do not seem up on the latest research

if he feels uncomfortable being questioned and working in partnership with you, given there is no established treatment protocol for this disease - I don't know but I always interpret defensiveness as weakness and an inability to absorb and process new information, not qualities I want in a doc

I hope your breast settles -

Jo

[barbados95]

The Professor said I shouldn't take notice of other sufferers comments and experiences.  But I feel that as this is so rare and few studies have been carried out, then this is the most informative method of knowledge available to us. So far the hospital has tested and treated me so quickly.  I was surprised that the Prof had treated someone else before and will ask him more about this.
I'm keeping my fingers crossed for the treatment.
Thanks.

[barbados95]

I have the email address of the professor so I am going to email him with this further question.
Thanks.

[JoJo45]

I would try the prednisone.  Why not.  It may stop the immune process in your breast.

I agree antiobiotics only play a role as far as any secondary infection due to any area of the breast being open after a drain or biopsy, etc.

I would discuss with him two things:

1) a long term moderate dose of prednisone, with methotrexate introduced at some point, to decrease recurrence of the disease, is the pattern of prescription I have seen most - why is he confident the short high dose pattern without methotrexate will be best for you?

2) for draining, is he referring to having your breast examined under ultrasound and only having needle draining done by radiologist to any collections that are liquid - why is he adverse to this?

Mastectomy is most certainly a cure for this.  You can ask many of the women on this board.  However, in some serious cases, there may be granulomatous issues even when the mastectomy has been performed...there are sometimes wound healing issues as well.  But Stanford, etc. have published mastectomy as a viable cure and the women here know it can work.  It is a very drastic step, and it can be very complicated because of the GM in a few cases - the skin grafts or flaps can become complicated as well.

The prednisone is one of the less serious treatments - it may work.

Please avoid having them cut in to your breast unless absolutely necessary.

Jo

[ruostentatious]

Do you know the outcome of the other patient he has treated?

I to have been tested for TB and it was brought up... however, I was immunized as an infant and always test positive from that...