mycobacterial granulomatous mastitis

[tbird213]

I was just diagnosed with mycobacterial granulomatous mastitis after a benign result from a 4 sample core biopsy.  My lump started out small, but over the now 8 weeks of this it has involved close to half my breast tissue.  The surgeon is concerned an incisional biopsy, which is needed to get additional tissue for the cultures that have to be done to pinpoint the mycobacteria and devise an antibiotic regime, would create a blood environment that will aggravate the situation.  He advises taking everything out now at a minimum, would probably prefer a full mastectomy.  I know this stuff is very resistant to treatment but a full resection is an overwhelming thought, especially as the next step rather than one after we see how I respond to antibiotics.  I have tenderness and hardness, but no abscesses yet, though they say they are inevitable.  Is an incisional biopsy such a risk?  What else is in store for me?

[jennjenn140]

I had my first granulomatous mastitis in 2004. It grew over night
( literally) and presented like inflammatory breast cancer, which was a very scary ordeal. It was surgically removed ( after many biopsies, puss drainage, antibiotics etc....) and healed well. The second lump came about a year later which was treated with Prednisone. The lump disappeared with 7 days, but the taper was four long painful months, I swore I would never do steroids again. During all this the fatigue I had begun to experience before the first lump had turned into chronic pain and fatigue. By the end of the taper I was diagnosed with fibromyalgia. I just woke up today to another large mass that grew overnight. It is painful/tender and I just have a gut feeling that is is, once again, Granulomatous Mastitis:(  The Rhematologist I saw for the last lump suggested maybe injecting the lump with steroids next time it happened. The surgeon suggested removal of all glandular tissue. Has anybody heard of steroid injections for it? I am scared to do the glandular tissue removal. Any comments or thoughts are appreciated.

[andie1234]

Hi,
Hope all is well with you. Just wanted to let you know that I had a simple bilateral mastectomy and reconstructive surgery on 8/23/2009. I am now two weeks post op and doing well, I think. It was not as bad as I thought it would be. My path reports came back benign for cancer but did show necrotic cellular tissue. Basically it was eating my breast tissue and forming masses of granulomatis infection. The surgery was seven hours and my doctor explained it to be very difficult, like cutting out concrete! Even after all the antibiotics and steroid treatment, it did not respond and was still purelous. Anyhow, she reconstructed using alloderm under the skin with silicone implants. I also had drains for a week. Right now, my skin is indented in some areas but she explained that it will eventually smooth out on its own. This is due to the infection persisting so long that it was so close to the surface, almost causing her to come thru my skin in areas. Worst case scenario, I may need some type of fatty injections to even it out. For now, I just hope it heals. It is not painful but rather very sensitive as if I have been scrubbed with insulation. I can barely stand to wear a soft shirt, but must wear a sports bra till healed. I go back to see her on Wednesday and hope that all is well and this feeling of sensitivity is normal and will subside. I am still on antibiotics to keep from getting infection and hope to end them soon. Let me know how you are doing.

AMD

[tbird213]

Well, alot has happened since my initial posts.  I got my second opinion and they were never able to duplicate the results of the culture to confirm or pinpoint the mycobacteria.  I was put on antiobiotics anyway, in tandem with an incisional drainage of an abcess that had finally emerged.  Doc left the wound open with packing and it healed very well and over the next two months the mastitis subsided.  I was given the all clear a couple months back, but reclassified as Idiopathic Granulomatous Mastititis since the mycobacteria finding was considered suspect.  Revisit rate is high, so I am in monitor mode right now.  I am very glad I did not go with the lumpectomy and think my first surgeon was too hasty to push me towards it.  Everyone is concerned that it can mask cancer, but I am ready to manage that risk as things evolve.  I recently started to feel the tingling/tenderness again, similar to how things started last time.  That has subsided and I had an  ultrasound today that doesn;t show any change so, so far so good.  I will keep you posted.  Best wishes for a good outcome for you.  This stuff is so rare, no one, even the docs, really know what to do, so you have to do your research with what little is available and then stand up for yourself .  I always trust my gut, and this time I think it served me well.  time will tell what else in in store for me.

[andie1234]

I can certainly sympathize with you. After several test ,drug therapy, and Dr visits,  in 2005 I had breast surgery for Galacteria, a condition of the breast causing excessive lactation. The surgery involved removal of glands and tying off the ducts at the same time received saline implants to fill the void it left. In the last year, I started to develop lumps primarily in the right breast that became very painful and infected. After seeing my doctor, and antibiotic therapy, it ruptured and seemed to heal. Three months later, it was back and worse! My doctor again treated me with Levaquin and Bactrum and a week later removed one mass to see exactly what the pathology would be. Due to the amount of infection she placed packing and left it open to drain changing it every other day.  At my two week post op visit I was diagnosed with Granulomas Mastitis and by then my whole breast is full of lumps. After ultrasound and further antibiotics she has recommended a complete bilateral nipple preserved Mastectomy with removal of present implants and reconstructive again. Meanwhile during deliberation with my insurance company,that doesnt want to pay for any of it, the eight week culture grew out a micobacterial infection. Due to this type of infection she has postponed surgery until it is under control.  I have since been referred by her to an internist that specializes in infectious disease. He has put me back on Levaquin for thirty days and explained to me it may be up to six months of antibiotic treatment. I will re visit him in one month for more bloodwork to evaluate the infection. So far, two weeks into more antibiotics,it is beginning to abcess again and is very hot and painful. Not to mention I feel awful. No energy, lack of sleep and achy all over. I just dont know what to do. I have researched this condition and found many sorted opinions although I was told this is rare. My fear is that I have read that this is not breast cancer, but studies have shown that it must be removed with complete margins because it does show on ultrasound, MRI and mammograms to be cancer. So it is impossible to diagnose cancer if it persist. I hope you receive good advice and treatment and wish you well.

AMD

[tbird213]

Thanks for the kind words.  What is the likelihood one of the MDs will reply to my questions?  I am feeling pressured into the surgical route, though I did just get an input from a separate pathologist that another couple core biopsy samples should be enough to grow the necessary cultures and it has renewed my hope that an antibiotic alone route is viable without much additional risk.  I am trying to get a referral for a second opinion too, but everything takes so long and the pressure is there to have atleast a lumpectomy sooner than later before this involves more of my breast.  Lately it has calmed down a bit, but I don't want to do anything stupid.  Advice?

[healingwell62]

Hi,

I'm not very familiar with you condition, but did see that one of the suggestions your surgeon offered you was a full mastectomy.  I've had one necessary mastectomy and one elective mastectomy, which was 2 weeks ago.  If it would save you from running the risk of increasing infection and potentionally threatening your health further, I can't tell you what to do, but I can tell you the simple mastectomy was not as bad as I thought it would be, in terms of pain.  Have you had a second opinion to help you make your decision?  Would that put your mind more at ease about what to do?

I hope one of our drs. will weigh in on this!  I wish you the best of luck and please continue to come to us for help and advice with this -- I have a really soft shoulder to lean on if you just need some support, ok?

Warmly

Chris
Healingwell62
Breast Cancer Community Leader