Granulomatous mastitis

Hi there

Has anybody here had or have granulomatous mastitis? It mimics inflammatory breast cancer and I've had it 3 years x

  • Also after I got my diagnosis today my mum informed me that a relative of mine (my dad's cousin) also had this condition and had a double mastectomy about 15 years ago because it was so debilitating! I'm not finding anything online to suggest this condition can run in families but it's just quite strange given its quite rare?

  • Hello I have been diagnosed with GM in April. I am waiting to hear about treatment. I'd be really interested to hear how everyone has been treated. Has anyone had success with steroid injections, has anyone had no treatment and it's gone away? Mine developed when I was unwell with covid 19. Waiting is the worst! 

  • Hi, I'm sorry to hear that. I got diagnosed with GM in March and I'm still waiting for treatment. First I was waiting for a referral to a rheumatologist but there was an issue and now the breast clinic have said they can treat me. They started with a steroid ointment and when I went to the pharmacy they said it didn't excist. So I went back to the breast clinic and they prescribed me hydrocortisone.05% it turns out it's out of stock and I'm now waiting for another prescription via post. I have an appointment with the breast clinic end of month so we will see... I hope you don't have to wait that long. How do you feel about it all? Sending you a big cuddle! X

  • Hi I've been dealing with this for 9months. I've been on no treatment I get my abcess aspirated and sent for culture which comes back as no growth. I think it's more watch and wait. 

  • Hi, I have recently been diagnosed with GM but I think I have had it for nearly 20 years.  I had mastitis whilst breastfeeding and developed an abcess which didn't heal even after months of antibiotics. I eventually had surgery but no mention of GM was made.  I have had several episodes over the years of a painful inflammed lump in my breast but thought it was due to a blocked duct. The episodes always settled after a few weeks. 

    A few months ago I had another flare. It had been a few years since the last one.  I also noticed another lump but wasn't too concerned as my breast has become quite lumpy.  Fortunately,  I was called for my routine mammogram.  The new lump was a cancer. 

    I had surgery for the cancer about 2 months ago and the area of GM was also removed.  The cancer area has been no problem but the GM has caused issues with wound healing. My radiotherapy has been delayed but with the help of the amazing breast care team it is improving. 

    It seems like everyone's experience of this condition is very different so I can't really offer any advice except that you should never ignore a new lump or assume it is just part of the GM.

  • Hi I was just diagnosed with this condition . Mine started after I had cancerous cells removed via a lumpectomy . A lump developed and I had another biopsy which confirmed granulomous mastitis but now they want more biopsy's plus testing for tb I'm very confused I have no wounds but a lump and severe itching 

  • I got diagnosed yesterday. I had no problems until a routine mammogram, which found 3 lumps in armpit, which were benign. On 1st September I had a core needle biopsy, and since then have had pain and discharge. It seems like the procedure set this off. On second lot of antibiotics now, but research suggests these don't work anyway. I seem to have been lucky to have been diagnosed so quickly. I have been squeezing out the pus, as I think if its in there, it needs to come out. I'm concerned that if the hole heals and there is still stuff in there, it will just fester. Good to know other people that have it. 

  • Yes I am living with last 11 months. And no treat is working on it. The area which is get infected, it isj ust getting bigger and bigger 

  • I've been diagnosed with this since March 2022, was convinced it was inflammatory breast cancer. Core needle biopsy, fine needle aspirations all confirmed GM. Offered absolutely no treatment options at all, I've been changing dressings almost daily for over a year, 3 open wounds on my left breast (4 have healed). Honestly if this is to start in my right breast I would be considering a double mastectomy, it's just not worth the pain. Joined a FB page about GM, lots of Americans on it who all get some type of surgery/meds and I feel like no one's interested, just get told 'we don't know much about it' and you're out the door forgotten about.

  • Hi, I have just been diagnosed after starting with inflammation and recurrent breast abscesses. I have just had my third surgery, and waiting to see the consultant to discuss treatment options on the 3rd October.

    I haven't been given much advise to date but I am on a research mission. I have also joined the GM FB page.