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Avatar universal

I am so happy that I found this forum.....

This isn't really a question - more so, my story.

First of all, I am new here and I am so happy that there is a place where I can go to voice my frustrations and ask questions about granulomatous mastitis.  I am so sad that all of you have this along with me, but at the same time, it is nice to hear from people who actually have this, as opposed to doctors that say it is too rare and they don't know how to treat it, or family & friends that have no idea what we are going through.

A little about me: I was diagnosed at 37.  I have 2 girls - 11 years and 18 months.  I did not breastfeed my 18-month-old, which baffles doctors because they were certain that breastfeeding was why I got this.  I work full-time and go to SNHU online.

Anyway, on October 20, 2015, I found a quarter-sized lump in my right breast, after having pain for 3 days.  I was extremely scared and made an appointment with my doctor.  I went in and was told that since there is pain, it is likely just a cyst and will go away on its own.  She told me to come back in 2 weeks if it was still there.  It just didn't seem right, so on the way out, I made an appointment for two weeks out.  

I am glad that I made that appointment.  I went back to the doctor after two weeks and the lump had more than tripled in size within that time and the pain was horrible.  The outside of my breast had started getting pink and a bit purple.  The doctor said that she was concerned about the rapid growth and inflammation, so she sent me to a breast specialist the following week.

At this appointment, I was immediately sent over to have a mammogram, which was EXTREMELY painful.  Since the mammogram looked like inflammatory breast cancer, I had to have an ultrasound, which confirmed that it could in fact be cancer.  They had to perform a biopsy - that is the scariest word to hear, I thought I was going to have a heart attack and I couldn't stop crying.  After the biopsy, I had to have another mammogram to make sure that the clip was inserted correctly and I was sent on my way.  The next day, I received a call from the doctor, saying "it is good news.  You do not have cancer.  You have something called Granulomatous Mastitis."  I was so excited that it was not cancer that I did not even fathom the fact that this disease could be as difficult as it is.

This is where the frustration begins.....

Shortly after my diagnosis, I started to get open sores.  There is one that is very large and three smaller ones.  Although I had no bacteria or infection at all, they started me on antibiotics.  I ended up taking a number of different ones over a 6 week period and they did not do anything for me.  They did not want to put me on steroids because they deplete your immune system and that was very concerning to them.  

Finally, the day after Christmas 2015, I started taking Prednisone - 60 mg per day.  For the first 5 days, I was so tired + extremely exhausted - I could not get enough sleep.  Then, on day 6, I could not sleep.... I was lucky if I got to sleep by 4:30am, just to get back up by 7:00am.  Though I was not getting an ample amount of sleep, I felt rested, my pain was gone, my lumps were shrinking - I was feeling good.  When the side effects began, it was another story.

My side effects are many: headaches, weight gain, facial changes (moon face, I believe it is called), shortness of breath, back pain all the time, weird taste in mouth (metallic all the time and when I eat or drink, I have a weird artificial sweetener taste in my mouth), eye twitching, pulling sensation in my arms, outer left hand has been asleep for almost a month, horrible charlie horses in calves and feet, knee pain, severe leg pain from hip to knee, etc.

Over the last couple of weeks, I have started to have pain and bleeding again.  I have moments where I am so frustrated about all of this and so depressed because it is taking so long to go away and I am gaining so much weight - 30 lbs in 3 months so far.  I just want this to be over with.  Sadly, it seems as though some of you have been going through this for years.  I have only been going through all of this for 5 months, but it feels like forever and it would be nice to say goodbye to it once and for all.

I was reading some of the posts here and I was just sobbing because it seems like a lot of people have had a mastectomy.  My mom has been telling me to just have a mastectomy to make it go away.  I just feel that it is unnecessary... if I had breast cancer in my right breast instead, I would have both of my breasts removed without a second thought.  But, granulomatous mastitis won't kill me, it is just frustrating.  I really don't want that to become my only option after all of this that I have been through.  

I read about a girl who decided to refuse all medicine and instead work on making her whole body healthier.  She started doing the Paleo Diet and said that she saw a noticeable difference and her granulomatous mastitis has gotten better.  I think I am going to talk to my doctor at our next appointment on Tuesday about taking me off of these stupid steroids and letting me do the Paleo Diet for a month to see if it gets better that way.  I have been tempted lately to just stop the steroids and stop going to the doctor for this because I am so frustrated.  The steroids have helped but the side effects are horrible and I just can't do it anymore.  

Thank you all for sharing your journey!  I am sad that there are so many of you that have been going through this, but I am very thankful that this support group is here and we can all try to help each other through this.  :-)
4 Responses
Avatar universal
Welcome! I myself am new to this group as well. While I am sad that you too are dealing with GM, it's nice to know we're not alone. I can relate and empathize with everything you had to say as I have been dealing with this since July 2015. Hopefully you will have positive results with your planned diet change.

1 Comments
I am sad to hear that you are going through all of this as well.  There seems to be a lot of people on this support network.  I am VERY surprised to see that.  All of the research that I have done on this condition has said that it is extremely rare and there have only been about 200 people worldwide that have had GM.  Thank you for your support!  :-) This group gave me the suggestion to start the Paleo diet.  My doctors do not have any other options, so it has to work.
Avatar universal
It's nice to actually have someone who understands to talk to. My poor husband just wants to fix everything. I too am thinking that the paleo diet may be the way to go. The meds only seem to take the symptoms away for a time, but when trying to wean things start to flare up again. My doctors welcome any new things to try such as the paleo or anti inflammatory diets because aside from the meds, they don't have anything. Good luck to you! You'll have to keep me posted as to how the diet goes. Stay positive, I know how hard that can be at times.
Avatar universal
I took 60 MG of prednisone for almost 2 years   I decided to quit and follow anti-inflammatory diet(a little different from paleo but quite similar)  for the first time ever was I free of flare up for 4 straight months.  It did flare up again but always not every tree weeks like it was before diet change and with steroids.  
That being said...after two years of anti-inflamatory diet it is back and worse than ever.  I'm going to try a cleansing diet for a while to see if it kick starts my healing.  I also broke down and went back to 60mg of steroids for 10 days to deal with worst phase of it.  
I don't have an answer.  I know diet can help.   It's not a cure but totally worth the effort.  Just dont get discouraged when it comes back and still makes you sick. There is no  cure.  There is only management.  Diet change has made it better than everything else even though it wasnt the cure. Count on this group for encouragement and support.  No one gets this like those who have it.
Good luck.  
Avatar universal
Thank you for writing your story, I literally cried after reading the whole thing because it sounds so much like my life and my experience with granuloma mastitis. I am 22 years old and have two children and I feel the same frustrations you mentioned with having to be on so many medications and Doctor's always saying it's a rare disease. I would like to know your update have you noticed any changes? Did you do the paleo diet? Any helpful tips?

-Blanca
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