Granulomatous Mastitis

[Java1263]

Hi there does anyone know if there is a forum or support group available to help people who have been diagnosed with chronic Granulomatous Mastitis?

[Noelle04]

I don't know, but I would like to find one.  I was recently diagnosed with Idiopathic Granulomatous Mastitis, and it's been hell.  I would love to find some support.

[odyssey26]

I have been diagnosed with granulomatous mastitis.  I've had 6 operations in 5 months.  The disease appears to have slowed down now.  I'm looking for a support group too.  I live in Auckland, New Zealand.

[Java1263]

Have you seen this post by odyssey26?

"I have been diagnosed with granulomatous disease mastitis.  I've had 6 operations in 5 months.  The disease appears to have slowed down now.  I'm looking for a support group too.  I live in Auckland, New Zealand"

[BhumikaMD]

Hi,

Granulomatous mastitis is a benign inflammatory breast disease of unknown origin that usually affects young women of childbearing age.

The recommended treatment for granulomatous mastitis is complete resection or open biopsy with corticosteroid therapy.

The chances of recurrence are high and so a regular follow up is essential.

Let us know if you have any other doubts or if you need any other information and keep us posted on how you are doing.

Also post us on what was advised by your physician.

Regards.

[LonePair]

I am diagnosed with GM last month. The symptom first showed up as a mass in the middle of August. In the beginning it was treated as a cyst, then as an abscess from infection, then eventually was finalized as GM because culture showed no infection and biospies were no cancer cells. I had 4 operations so far. The doctor left the wound open so I am still waiting for the wound to close. I suggest you see experienced breast specialist for this disease.

[guigudizhu]

I was diagnosed Granulomatous Mastitis on breast with chronic drainage in 2007. I went through 3 surgeries in one year and it finally healed and recovered. I started to have this disease in August 2006 and had a first surgery on my breast.
In April 2007 the breast infection happened again, and I had a second surgery at Stanford Hospital. I came back home immediately after the surgery, and I had to ask my husband to help me change the medication. But I still have hard lump around the operation area.
The doctor mentioned to us that they've only seen one similar case who had taken a medication for 18 months, with side effect on liver, and has to take the medication for the rest of life.
They suggested that I take this medication.
However, I think this is high risk, so I chose to return back to China for treatment.
On July 3, 2007 I had a third surgery at in Shanghai China.
This surgery cleaned out the infection remaining from the previous two surgeries.
I stayed in that hospital for two months. Every morning the doctors treated me with Chinese medicine powder in my wound to kill the infection. Every once a while they tested the infection level, I took Chinese medicine twice a day. On September 4, 2007 my wound closed and I was discharged from that hospital. Then I had taken Chinese medicine for 6 months.
Now I have completely recovered, my breast is soft and there is no more hard lump.
In January 2009 I went back to that Chinese hospital, did some examinations, and the lymph caused by the infection under my arm had disappeared. I had stopped taking medication since March 2008.
That hospital is the only Chinsese hospital with over 70% success rate on this disease. There were over thirty patients in this hospital with the same disease as me while I was there. New patients keep coming in while existing ones recover and leave.
I want to share our success with you, I know this is very difficult experience for people with similar situation, and the disease may stay with the patient for the rest of life.
Personally I think it's insufficient to just do surgery in the hospital, but leave the day-to-day after care to the patient and the family, it's not possible to completely kill the infection in this way.

Annie