granulomatous mastits a success story

[tanya34]

Dear all

I am posting this message at the request of JoJo45, who is doing a fantastic job starting this forum,to give you all lots of hope.

I am 36 years old with 3 children.  My story started with a small lump in my right breast which then turned into an abscess and discharged on its own few weeks later.  I was initially investigated for cancer and this was excluded.  

Over the next 12 months I had several abscesses which seemed to be all around the breast at different locations.
These all discharged on their own and healed.  I must add that they became less and less severe with time in terms of size.

Treatments I had included
1. flucloxacillin - I noticed this helped a little bit.  
2. Augmentin - I did not really notice much difference
3. Using absolutely nothing had the same end result on the abscesses.

No bacteria was ever grown from my fluid from the abscesses.  

It took exactly 12 months, but I have now completely recovered.( I hope and pray!)

I have had no symptoms for the past 3 months.

When I had the symptoms it was hard to think that anything was going to help or that it was ever going to go away.  I am also a doctor so I researched this topic so much.  I would now give you my OPINION  based on what I have read.  Please note it is only my opinion.


1.  There is no definite treatment for granulomatous mastitis.  Therefore I would personally go for antibiotics(why not - it may help), as first line treatment.
2.  As one of the other members has written, boost your own immunity!  This will help your own body fight any infection or inflammation(best when we don't even know what is causing the problem in the first place).  I would recommend lots of walking and healthy eating and multivitamins.  
3.  No harm in trying herbal treatments!  I took echinacia and Manuka honey factor 10+, these are thought to boost your immunity.
4.  Think twice before you have surgery and strong treatments like prednisolone and methotrexate,  ask what evidence is there to suggest that these work?  I would have jumped at the chance for someone to cut away my lump but I am glad I didn't.
5.  I have read that in countries like India there is a TB mastitis that can cause a similar disease.  If you are extremely unwell or have lymph nodes in your underarms or have suffered with TB, this is an option your doctor may consider.
6.  The consultant I saw was lovely and insisted that I would recover on my own and his reassurance,(althogh at the time I didn't believe him), really  helped.
7.  Have you noticed that not many people are on the forum for too long, I hope this is an indication that like me many do get better.

I really hope all this helps.  Be positive and I really believe and hope that all of you will get better soon.  
Tanya34

[lillkagri]

Hi

My doc want me to go on prednisolone for 4 months now.. and I really dont want to. Just finished with the first week. I have had GM since 1st february ( woke up with a giant breast mass)
I wish I just could stop with the prednisolone, because Im so skeptic to its, and my breast is getting worse even tho I have bin on prednisolone,

Sorry if my english is bad .. Im from Norway.

Best wishes from Lill

[Miriamkh]

Thanks for your response, Jo. That is similar to my breast, I still have a prominent large lump on the inside, too. My breast surgeon is calling it scar tissue but it feels like the same lump that formed a year ago, at least to me.
I will get an ultrasound, I am curious as to what it looks like in there right now.

Miriam

[JoJo45]

Hi Miriam - in respnse to your question to Tanya, I wanted to share that I do have scar tissue, hard lumps in my breast (not cysts) and when I have ultrasound, there is clearly the channels through the tissues where my drainings happened.

My last MRI showed 'inflammatory changes' in my breast...so I do have residual lumps from the GM.

Jo

[Miriamkh]

Tanya,

Thanks for sharing your story. It definitely makes me hopeful for our disease. I am at my 1 year "anniversary" right now with when I got my first abscess. I also believe that it gets better with time. After all of my scary flare-ups, (unnecessary) surgeries, hard-core medicines, and alternative treatments...I am at the place right now where even though I am not "cured" I have had no real flare-ups in a while, I have no drainage...and my breast is healing, almost healed. I am hopeful that it will be all gone soon.
I think it would be great if we could all check in here periodically and not disappear so that we can keep track of the progress/ healing of this disease. If people disappear we don't know if they got better or gave up on writing in.
Tanya, I am curious though...do you have any lumps left or is your breast soft and back to pre-disease state? Do you have scarring or bruising left?

Miriam

[JoJo45]

Thanks so much Tanya for taking the time to share your story.

My wish is that women who have just been diagnosed, and are feeling very unsure, will find this forum and at least gain some hope from the success stories that are out there.

SO SO glad you feeling well.

Best, Jo