Dear ancmac: Granulomatous mastitis (GM) is a benign inflammatory breast disease of unknown origin that usually affects young women of childbearing age. Patients usually present with a progressive onset of a breast lump and there is no history of infection or trauma. The breast lump can be of
variable size, is usually unilateral, firm, ill defined, and mildy tender. Sometimes an associated locally inflammatory reaction is present; nipple retraction is common. Enlargement of lymph nodes under the arm is common. It can be easily confused with malignant breast cancer and requires thorough
pathology review as there have been cases of patients who were thought to have had a malignant disease that in some instances resulted in inappropriate radiotherapy and wide resection of breast tissue.
Having been diagnosed with chronic granulomatous mastitis close to a year ago, and after dealing with two surgeries and being on high doses of prednisone for several months. My wounds finally closed up in January of this year. It is a benign condition, but not always diagnosed. If you are dealing with it at the moment. I would be happy to share my experiences. Articles and information were often hard to come by. I am hoping it is now behind me. Although after a mammogram last week, due to a mass I am scheduled for a breast MRI which will hopefully be nothing.
DESPERATELY NEED HELP! Suspected Granulomatous Mastitis but Doc won't listen!
This is my history:
1. Dec. 2002 Breast Lump appeared overnight (literally)
2. Had Thermogram which showed "no neovascularities - thermal patterns consistent with fibrocystic breast disease" - Doctor gave me a sheet from Dr. Jonathan Wright about work with iodine and this condition and had me take to my family doctor.
3. This doctor told me the lump was freely mobile and suggested I do nothing
4. After a few months, I decided to see someone else for pain and the size and the doctor put me on the iodine but instead of Lugol's solution he gave me another form which did nothing
5. Let this doctor talk me into an "aspiration" but he said the lump was solid and not much fluid like a cyst - lab results showed nothing. A few months later, a "fistula" or "discharging sinus" developed at site of needle aspiration.
6. Finally I remembered the original doctor who gave me the results of the thermogram and found out he was close to my city so I visited him - he has an integrative practice and works with not only M.D.'s like himself but also N.D.'s and herbalists and took bloodwork and also had his partner who is a naturopath do an electrodermal screening.
7. Bloodwork is perfect - the doc says cancer would show up as elevated sed rate, alkaline phosphate? etc., Had me do an electrodermal screening which showed no cancer but issues with circulation and mammary lymph flow.
8. By this time, the pain had become unbearable and the doctor suggested I see a surgeon for a lumpectomy for pain management. I told him of my fears of biopsy spreading a cancer but if he felt pretty sure I was safe, then I would do it. He said everything looked great and he would certainly be interested to actually find out what it was since clinically it "mimicked" carcinoma but found it hard to believe with my excellent results and excellent health.
9. Today, I saw the surgeon - the first thing he said when he saw the lump and the open, weeping sore was: You have late-stage breast cancer. I said "I can't believe that because all my tests are so good" He said "well they don't know what they are talking about because they can't know without a biopsy. I said "Well, if they don't know without a biopsy, then how can you just look at it and know without a biopsy! He had the gall to say: " I know because I have experience" I said "Well you can't judge a book by it's cover!"
10. I have been reading alot about different "disorders or diseases" masguerading as carcinoma and asked him if he thought it was possible I had Granulomatous mastitis or Breast Tuberculois (even though rare I have been exposed 3 times and it is something to be considered - also, I was hurt at work a few months back and the doctor took a chest x-ray to make sure no ribs were broken and in the process he noticed there was a lung "infiltrate" which he said could be a resolving pnemonia since I was sick with pneumonia a few months earlier - but now I wonder if it could be TB?) but he refused to even listen and acted like I was stupid to even suggest either. I have also read alot about duct ectasia and periductal mastitis masguerading as carcinoma especially in women in their 40's who smoke (I do)
I am sorry to have taken so long and so much of your time but I guess I just need someone to talk to. After almost 3 years of this pain and not knowing, I am scared! I also wanted to know what everyone thought and I wanted to know if you think I am crazy? (Like this surgeon obviously does). Actually, I think it was wrong of him to scare my husband like that without knowing anything about me, my case or my history - he based his decision on just simply "looking".
Thanks so much and any responses will be greatly appreciated!
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I would agree that the surgeon you saw did not have the best "bed-side manner" and you might want to find someone else that you are comfortable with. The only way that you will know for sure what is going on is to have the biopsy -- exams and mammograms and MRIs and all the other testing can only give you a best guess of what it is. The idea of surgery spreading cancer is pretty much an old wives tale. Don't let this keep you from moving forward as you can only deal with this problem when you have a definitive answer of what it is. If it is cancer, the sooner you know, the better. If it's not, you will have your mind put to rest on that issue and can deal with the other possibilities. I hope everything turns out OK for you.
Biopsy spreading cancer is NOT an old-wives tale - I can give you a list of over 55,000 articles that prove that biopsy causes "seeding" or spreading of cancer.
Just think about it - the cancer cells are certainly smaller than the needle - a tumor encapsulates itself in order to protect you - when you penetrate it, you just let loose cells that are once again much smaller than that needle.
Think about it!
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