563?1263745088
granulomatous mastitis User Group
mastitis
About This Group:

This group is intended as a meeting place and forum for those who have been diagnosed with granulomatous mastitis ('GM') or idiopathic granulomatous mastitis ('IGM'). I think one of the greatest challenges with this disease is its rarity and the associated lack of understanding in the medical community. But we can share here - and hopefully make the healing process a little easier for each other.

Founded by JoJo45 on January 17, 2010
242 members
Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

mastitis

I was diagnosed with Idiopathic Granulomatous Mastitis just a month ago. I had a normal mammogram back in Sept.2010, in early April my left breast was sore (but I didn't think much of it because I exercise), then one day my left nipple was inverted (which is abnormal for me), and that's when I felt a hard mass. I had a biopsy with ultrasound, later biopsy to get samples, then an excisional biospy 3 days ago. I'm in no pain, feel great which is so weird about all this.  Tomorrow I'm going to get the test results back. In the meantime, I'm trying to make a list of questions to ask the doctor. Does anyone have any ideas for questions I should ask my doctor who is a Breast Surgeon?
Tags: mastitis
Related Discussions
6 Comments
Blank
Avatar_f_tn
Hi Frankie:

Sorry to hear you are having trouble, but also happy to hear that things seem to be moving in the right direction for you.

IGM seems to have very differerent presentations in different people.  Some (hopefully you), just experience one lump and then that is it, their breast settles down (sometimes without even any intravention, drug or surgery), others have chronic, very serious and painful disease (as I am sure you have read here, so won't go in to that).

I would make sure that your breast surgeon is knowledgeable about the disease - and that you have a full treatment plan and contingency plan in place should you have recurrence or a setback -- I would ask:

- how many other cases have they treated?
- what is their second line of treatment plan if mass returns - corticosteroid or methotrexate? - if this is the case, you will need a good rheumatologist to join your treatment team and I would suggest you find this person now, while you are feeling strong and well just to make sure you have all your ducks in a row, should you need additional care down the road.
- are you breastfeeding or have you given birth in the last couple of years?  if not, any ideas on what may have occured for you to develop IGM?  Cyst rupture, or autoimmune reaction are often common theories for those of us not breast feeding that deveop the disease..maybe you can try to steer clear of anything that might have caused a reaction?  Do you have bone pain or stiffness in any other areas of your body?
- not sure where you are located, here in Canada, antibiotic and then corticosteroid or methotrexate (anti-tumour) treatments seem to be the current gold standard...excision is seen as provoking...I would have that discussion with my doc...why the current approach and what is next.

But it sounds like you may be lucky and just have a mild case that will resolve and not come back - I sure hope so.

I had extreme feelings of toxicity and pain when I had my outbreaks and so the fact that you are feeling generally well is encouraging.

Please let us know how you are doing....and I am cheering for you.

Jo


-

Blank
Avatar_f_tn
I really do appreciate and welcome your information and comments.  My test results were benign and my doctor confirmed her predictions that I have Mastitis.  I have a follow up visit with my doctor tomorrow and I will definitely ask the questions you suggested.

To answer your questions, I live in Texas and the oil companies have been drilling like crazy all around us within the past yearl.  Recently, a news article was printed that we have had "higher-than-normal levels of benzene at our natural gas drilling sites.  So, our air is not the best quality right now. LOL!

No, I'm 51 and definitely not breastfeeding  but I did breastfeed my babies over 19 years ago for a limited amount of time.  I don't know what caused this IGM and I have not taken birth control pills in 19 years nor any hormones.  I do teach school so I'm always surrounded by sick children but otherwise I have a strong immune system and I've been following the American Heart Association. diet over 2 years so I have very low sodium intake and I'm within my normal weight.  

However, several years ago I had a high Prolactin level in my blood and I've often wondered if that could be related.  I found something on the internet about a doctor who did a study on the relationship of Prolactin and Mastitis but I haven't read his article yet.  Have you heard about it?

I don't have they symptoms that other people have like redness, high fever, leaking, anything. The only symptom I had was soreness in the breast and an inverted nipple, then the hard mass.   I wonder if I need to get a second opinion. I don't want to take steroids so I need to figure out what this is.  I'm sure my doctor will discuss treatment when I see her.  

How do you know if you have a cyst rupture? Can it end up as a mass? I guess I'm just wondering what might be in store for me in the future.  Thanks and I will follow up on your advice.

Frankie 53
Blank
Avatar_f_tn
Hi Frankie:

I also have read in many articles that prolactin levels are thought to have some association.

I don't know how they would be able to confirm a cyst rupture, perhaps through ultrasound, but I doubt it is something that can be confirmed -- it is one theory that I have heard though, that the cyst fluid might cause an autoimmune reaction.

What I personally think is most important is that you have a good rapport with your doctor, that they have an open mind regarding this disease, and will fully educate themselves (and you) on all available testing and treatment options.  For me my care team consisted of a breast surgeon (oncologist who had seen 2 other cases so I was lucky!), radiologists at the breast centre who did many biopsies and procedures on my breasts, a good, open-minded rheumatolgist, who had a willingness to work with me and the breast centre on my treatment, despite having no experience with the disease. I also had access to a very sophisticated pathology department at Women's College Hospital in Toronto, Canada who made my diagnosis, despite my original diagnosis of Inflammatory Breast Cancer.

I feel good about you in that you are feeling well other than the breast lump, and have not had any changes since the biopsy.

I would get a second opinion if you can...you need to be sure what you are dealing with - we all need to be strong advocates when it comes to our medical care.  I think keeping a journal of symptoms and appointments is also a good idea, and at times a friend or loved one to come with you and take notes - they often can 'hear' better than the patient.

Let us know how your appointment goes.

Jo
Blank
Avatar_f_tn
I had a good appt. and my doctors seems very sincere.
She told me Mastitis is new to her and is in the process of learning more about it.
She took the time to answer your questions  which was "I don't know". She doesn't know anyone who specializes in Mastitis so it looks like I'm going to be looking but in the meantime,  she wants to see me in 3 weeks.

I did express my concern about my past Prolactin levels and she wrote a prescription to have my levels checked today which I did.  I really feel like she listens but I would feel much better if I could find a doctor that specialized in Mastitis.

I'm still going to follow your suggestions.

Thanks again!
Blank
Avatar_f_tn
I too tested for higher than normal prolactin (twice, I think: once when I was in my twenties and once after my first child was born).  I have no idea what my levels were before I got GM.
I too am in my fifties. I too did not suffer in any way except the breast itself and the inverted nipple.  The breast pain was pretty bad, of course, but the rest of my body was unaffected.  Until I started taking the prescribed drugs, of course!
Don't close your mind to the Prednisone treatment, unless you have a good reason, because it works.
I have been thinking, although I can't prove this, I can only hope that it is true, that if the treatment with Prednisone is long, and the tapering is done very very slowly, perhaps the breast can "unlearn" this autoimmune thing it is doing.  Perhaps if you taper too quickly from the Prednison, the breast has not had a chance to really get back to normal.  My treatment seems excruciatingly long.  
Oh yeah - I remember that before I got this disease, for about a year, it seemed like there was some unnatural activity going on in my breasts.  It resembled a light version of the letdown reflex in breastfeeding.  It didn't happen often and I didn't worry about it, just wondered about it.
Blank
Avatar_f_tn
It sounds like you had similar symptoms to me -  just the lump and not much else (mine sometimes got a  little tender, but that's it).   The treatment in my case was to keep a close eye on me and wait to see if it spontaneously resolved - which it did.

I was in the care of a good Breast Cancer care unit which takes a multidisciplinary approach  (I had already had chance to check them out as we had moved my mother to their care from somewhere not so good when she had breast cancer) and so I was confident in them.  

JoJo has posted a reference to one study on outcomes of different treatments to my post which might be worth a look if you didn't know it already, and perhaps discuss conservative management with your doctor as one of your options.
Blank
Recent Activity
Avatar_f_tn
Blank
Lopine808 joined this group
Welcome them!
Jul 30
Avatar_f_tn
Blank
Dinaxxxx joined this group
Welcome them!
Jul 03
Avatar_f_tn
Blank
c_mo joined this group
Welcome them!
Jun 28
MedHelp Health Answers