Introducing myself

[Suepy68]

Hi!  My name is Sue and I was diagnosed with GM back in February.  It took nearly 4 months to identify it.  I found a lump back in November, was referred for a core needle biopsy.  Prior to the biopsy being done, the surgeon sat me and my husband down and told me I had breast cancer.  He discussed treatment options and the grim prognosis.  I was devastated. Anyway, they did the CNB and it came back negative for breast cancer and the pathologist suggested it might be GM.  I was elated!  Went back to see the surgeon in January and he said he didn't trust the biopsy results and wanted to do a further, larger one (under a GA).  We did that, waited 3 agonizing weeks for the results and got the same ones.  Granulomatous Mastitis.  The surgeon was fairly dismissive of the condition.  "If it starts to behave like an infection, we'll give you some tetracycline.".  (My lump had been discovered during a breast self exam so I didn't actually have any active infection at the time).  Neither the surgeon nor my GP has ever heard of this condition, which, from reading some the posts here, isn't uncommon.  THey both think if I take some antibiotics when it flares up, all will be well.
So this weekend it's decided to act like and infection.  I have about a two-inch, red, hard lump behind and above my nipple.  It's very tender and hot.  I'm seeing my GP this morning but I know she won't really know what is causing it.
Some of your stories are so harrowing and I'm sorry you've all had to suffer so much.  And I'm very grateful that I've found this place!
Sue

[Suepy68]

Jojo,

Once again, thank you!  I will be calling the Henrietta Banting Breast Centre tomorrow morning.

My pharmacist proved to be much more helpful than my GP - after I spoke with him yesterday he spent most of the night researching GM because he'd never heard of it.  I guess i kind of expected my GP to react like that but apparently, that was expecting too much.

Thanks again!

Sue

[JoJo45]

Hi Sue

I am in Toronto, ON so know the GP problem

GM is not generally handled by GPs - it is handled by breast specialists or rheumatologists (GM is considered an auto-immune disease by many.)

Both the Women's College Hospital (Henrietta Banting Breast Centre) and the Sunnybrook Rheumatology Department have treated multiple cases of this disease.  I believe you should consider a referral to a Dr. Mary Bell at Sunnybrook, and a Dr. Tulin Cil at Henrietta Banting.

Both centres can be easily googled - if you need me to provide more details of the contact numbers, I can.

Strongly recommend you get a second opinion.  GM can be fairly well managed if you have good pathology, radiology and the appropo treatments.  I know both centres are doing their best to be up on the latest management techniques and have active patients with GM (I have been a patient at WCH for a number of years.)

So help is nearby you and we are lucky to be covered by OHIP - our friends stateside are not as lucky in that way.

Best wishes for healing,

Please do get the proper care at this early stage, I believe it could very well save you many difficult steps down the line.

JoJo

[Suepy68]

JO, Thank you so much for your reply!  You clearly know much, much more about this condition than either my GP or my surgeon.  I saw my GP yesterday(unfortunately it was before I read your advice) and she is not only uninformed about GM but also seem uninterested in learning about it.  I mentioned that I had gleaned some information from various websites (including this one) and asked if there was any way she could find out more.  Her response was "I could only access the same information as you, ie. Google".  She's so helpful.
Anyway, she's put me on the tetracycline for now.  Her suggested next step, if required, is to refer me to an infectious disease specialist.  The problem is where I live (Kitchener, Ontario) there is a chronic shortage of doctors (GPs) and so if you have one, you can't get another. SO if I was to leave her practice (which I would LOVE to do), then I would be without a doctor completely.  
So I guess I wait and see what the abx do and take it from there.
Thanks again for your reply.
Sue

[JoJo45]

Hi Sue:

Sorry to hear you have GM.

couple of things I would suggest to you as a fellow sufferer:

a) I think it is good that your case has been so limited and slow moving to this point
b) tetracycline, I do not believe is a proven treatment for GM, as most GM cases are not from any identifiable bacteria - most cases are completely sterile
c) next stage may very well be that you will develop an accumulation of pus or cellular debris (likely what is happening indicated by your hard, red area) - in GM, it is very common for this material to channel or develop a 'sinus' (pathway) to the outside of your skin on the breast and break through to drain - if this spontaneous drainage does happen, it can be very upsetting at first, you will have a hole in the skin of your breast through which the debris will drain and will need to wear a breast feeding pad, or some use maxi pads, or I would use non-stick bandages taped down to my breast
d) at this point some doctors will prescribe strong antibiotics (I was on Keflex - strong skin antibiotic) to avoid this open wound becoming infected - to my knowledge this is the only role antibiotics have been shown to be indicated in for GM treatment
e) a number of us, having had spontaneous drainages, thereafter would arrange to have a radiologist or other breast specialist, carefully guide a drainage tube to the area (guided by ultrasound) before it creates a channel, and drain it before it breaks through the skin; this does seem to lessen the pain and severity of symptoms and for me I had no scarring when done this way, however the scarring from spontaneous sinuses can be quite long-lived, as can the open draining duration

if I were you I would at this point:

- ask if any of your biopsies tested positive for any bacteria of fungus
- ask if you can have a referral to a rheumatologist as you may want to consider using either prednisone or methotrexate drug therapies in the management of your case - and they are the specialists with these drugs
- discuss the possibilities of obtaining ultrasound imaging and possibly a draining if indicated

and I would come out and ask your doctor if he/she feels that you may need a referral or he/she may need to consult a specialist with more experience in the management of GM - it is a tricky disease, you want an educated doctor managing your case - the tetracycline comment coming off the cuff like that does not in my mind indicate anything close to an educated or intelligent discussion regarding GM management

glad you found us - any other questions just ask

Jo