Can anyone provide some basics about granulomatous mastitis? I have just been diagnosed, and am curious to find other solutions to it besides Surgery, and or use of corticosteroids. Has anyone tried a more holistic approach with success? thank you.
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.
I went through this frightening experience with GM in 2001. frightening because so few doctors had ever heard of it and none knew how to treat it. The lump grew to the size of a golf ball. I was fortunate, the first doctor I talked to gave it a name. That made it easier to find information about it online and to talk with doctors.
I opted for steroids and lumpectomy. After my surgery I had one fistula (I think that's the right term) open. Since then nothing, no recurrence. It was a nightmare though. I see in these threads some experiences similar to mine. Read on if you're interested
In 2001, I was 42, healthy and my sons were 4 and 8. I had HMO insurance and had never visited my PCP before this. Just annual visits to the OBGYN. after learning the name of what I had, I searched online and found a couple of case studies. In one or two case studies the patient took steroids followed by lumpectomy. I couldn't find any follow up to know if the treatment had worked. It took from July - September to get approval to see a specialist. I saw a breast specialist, a rhuemetologist, a HIV AIDS specialist and a couple of others. I had two biopsies. I had 5 specialists recommend I visit Mayo Clinic and could not get my HMO, BCBS, to approve until I dropped the magic phrase. Every industry has a magic line that triggers fear of lawsuit and gets results. For the insurance industry in the US the line is ' I'm being denied medical care'. You must insist on talking to a supervisor and say this phrase. It worked.
I went to Mayo Clinic and the lump in my breast was big by their standards. Mayo had never seen a case of GM and it is not their specialty, cancer (even though it has been misdiagnosed.) However it was good to talk with a number of experts and it helped me decide what to do. Frightening as it was, I had to make the decision, the doctors only give information. The surgeon wanted to cut, because that's what surgeons do and the generalist wanted to give me experimental drugs, that's what generalists do. Although she said it would be like using a cannon when a pea shooter would do.
I opted to follow the treatment laid out in the case studies. I knew more about GM than they did. (scary thought) I opted to have the surgery done closer to home UM Medical Center. I'm very fortunate to live in Michigan near Ann Arbor and UM Medical center, a research hospital. UM is wonderful. I had the surgery in January after 6 weeks of steroids. The lump was gone and the surgeon said the tissue looked healthy. He felt bad about cutting out healthy tissue (He did tell me he loves to cut flesh. I'll be forever creeped out about surgeons).
It took months of seeing specialists, calling my HMO and finally threatening them. Many of the doctors I talked to laughed when I told them what I had. At the time there were only 65 reported cases. Hardly anyone had heard of it. When you talk to doctors keep in mind that most fit their stereo type. Surgeons like to cut and will always recommend surgery. I did run into a doctor I thought was incompetent. He tried to brush me off and recommended surgery without even looking at my mamograms/ultrasound. He's a surgeon and likes to cut. I told him he wasn't going to be my doctor and complained to the head of the department. She had worked at UM and named this thing for me. She was very sympathetic, a wonderful person, I'll always feel grateful to her for giving me a clue when no one else seemed to be able to.
To the woman considering a double mastectomy, I hope you change your mind. That sounds really extreme. To everyone else, I hope my experience helps you deal with yours.
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