granulomatous mastitis Community
302 Members
Avatar universal

My mastectomy....

...is scheduled for June 24th.  Two weeks away.

I'm terrified.  I won't lie. But the thought of getting GM again terrifies me more.  I honestly can't take another two+ years out of my life to deal with it again.

I wrote this email to a friend the other day, and it's exactly how I'm feeling:

"There’s a big part of me that’s sooooo afraid to do it.  Get my boobs cut off?  Another surgery?  Be without breast for months?  Have to stop running again.  Then what if I hate the way I look after the reconstruction.  And B tells me he’ll support me either way, but then tells me that he doesn’t want me to be sad and depressed about being flat chested.  Of course I’m going to be sad!  This is a HUGE deal.

Then there’s the part of me that’s so afraid not to do it.  The insurance will pay for it now, they may not later.  I can’t imagine another two years of my life being taken dealing with it if it came back.  Steroids again?  Chemo shots again?  Constant trips up to Denver?  More surgeries?  The constant pain.  The emotional scars of seeing myself in the mirror, disfigured.  The idea that getting pregnant again would cause more problems.  Feeling like crap every single day.  Depression.  Being sick all the time from all the side affects from the meds.  Not having an immune system to fight things off. Taking more time off of work, off of running.

The surgeons are really good.  One of them even hugged me the first time I saw her. Sometimes, I forget how bad things were, and then I see a doctor, and there it is all layed out in front of me. The biopsies, the films, the lab reports, the doctor’s notes.  And then I have to tell my story.  And then I see the looks on the doctor’s faces.  And then I remember.  It was a nightmare.  I can’t go through that again."

So, I'm going to do the mastectomy and have the tissue expanders placed at the same time.  

GM has been such a big part of my life.  I got my first lump in June 2007.  Because GM was (and really still is) a diagnosis of exclusion, it took seven months before I got a diagnosis.  At the time, it was soooooo rare.  There was nothing out there.  No other cases, nobody to talk to.  It was hard.  I'm glad that this group is here now as I say goodbye to GM for good.  

Thank you to everyone for supporting each other.  Stay strong. There is hope.  
15 Responses
Avatar universal

Your letter is so beautifully written, so reflective of what it is like for women with this disease.  Reading it made me cry for you, and for us all.

As you have expressed so eloquently, the effects of GM can be profound and lifechanging.  Things are not the same ever again.  You have been assaulted with so much pain and loss.  I don't think you can experience this disease at the level you and some of the ladies have, and come out unchanged.  Unbattered.

It take a powerful courage to make this decision for yourself.

You are so determined to heal that I know you will.  I think of the other women who have taken this step, as you are about to, and found healing and relief after so long.

I really admire you Noelle.  Your strength and grace are incredible.

And sharing with us, so others can benefit, while you are so ill, - thank you.

You know we are all here for you.

One thing I have noticed, and it makes me hopeful, is that often after one of our members has posted for some time, and then chosen mastectomy, and underwent the surgery...they may post a bit after, (and almost 100% success stories with ridding themselves of the GM)...and then they go quiet.  And I take that to mean they have healed and moved on with their life.  I am hoping that for you.

Avatar universal
Thank you for your kind words Jo. I can honestly say that while the physical scars will always be reminders of what GM has done to me, having this forum here is helping with the scars that can't be seen in my heart.

I will continue to update and post.  It's important to me to continue to be involved because it's not fair that we have to suffer through this with no real answers.  I will fight until GM is a widely recognized disease.  Nobody should be pushed into a corner just because it's rare.  I hate to see meds being thrown around just because they "might work" and because that's the only thing our insurances will cover. I KNOW in my heart there are other things out there that could work, but are not being used because of lack of knowledge by both doctors and insurance companies.  So I will continue to post here and I will continue to fight until we get the attention and treatment we deserve.

Avatar universal
My name is gabrielle. I'm a 27 year old mother of a 2 year old girl. I had my bilateral mastectomy and nipple removal  april 1st 2011 after living with mastitis for 2 yrs.
I had no idea what it was up until the last 8 months and where it started in my left it spread to my right by the time is was done. I was in so much pain for the last 9 months I can't begin to explain it or what I did to relieve the pain when it got bad. I went from dd's to almost nothing. The surgeon removed a mass larger than a baseball from my left breast that was attached to the nipple and retracting the nipple in,and when he went to take the nipple it was so infected that it busted. He left me with enough tissue and skin to reconstruct but no plastic/ reconstructive surgeon worth his salt will work on a mastitis patient for at least a year afterward because most plastic surgeons consider mastitis still a bacteria instead of a inflammatory disease. The problem I'm now confronted with is as I heal my pain is coming back and my gut tells me I'm going to wind up with another surgery removing the remaining tissue and being scraped to the bone......there was nothing they could give me to treat the mastitis before and what I thought was done with- I'm not sure its really over at all. The flip side is no matter what your breasts do not define a woman- do not define you- and my guy and I got married 5 days post op' the day my drains were pulled- big breasted or flat chested-or in my case nippleless as well'  it does not change who you are..... And my sympathy, tears, outrage,and thoughts are with you.....  
Avatar universal
I am praying that all goes smooth with your surgery tomm- god bless. -Gabrielle
1548207 tn?1303457780
I am thinking about you this evening. I pray you have a successful and safe surgery tomorrow and that you heal quickly.

1515564 tn?1431386900
I'm praying for you too. Just curious - Where do you live?
1627204 tn?1302016137
Thinking of you a lot today. We were in Castle Rock last week for a wedding. We drove around a lot. Would have loved to meet you. Not really an opportunity anyway...trips are like that. Anyway, I love that we have this connection. I will be praying for you all weekend...Thanking Him for the loving care he will show you thru this time.
Avatar universal
Thank you everyone!  I'm alive and well :)

I live in NM.  
1515564 tn?1431386900

I am glad to hear that you are ok. I have been praying for you every day, and thinking about you often.

I live in Arizona...so, somewhat close to you.

I hope your recovery goes well. Please let me know if there's anything I can do.

1627204 tn?1302016137
Smiles, my hubby flew to Pheonix yesterday to speak to Accountants.
1515564 tn?1431386900
It's not the best time of year to visit...it is SO hot! Hopefully he can stay inside in the AC. It's beautiful here in the fall and winter, though. I live in Tucson...about 2 hours away from Phoenix.
1657910 tn?1302375661
Hi Jennifer,

Fellow Arizonian here.  PM me and tell me what side of town you are in.  We are close in age too.

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