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granulomatous mastitis Community
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1657910 tn?1302375661

GM moving locations

So I saw my breast surgeon last week, got another mammo and ultrasound Friday, and saw my rheumatologist today.  I am gather my info, the docs are working together, I'm getting all there opinions, and weighing the options of a double mastectomy at some point, etc.  And today my rheumatologist said that without that much research out there, there is no way to say that with a mastectomy my GM wouldn't move to let's say my underarm.  That even if we remove the breast tissue, I still have GM.  

He isn't ready to abandon ship yet, and my surgeon isn't either, I'm still ready to try meds, but just wondering how long is long enough.  Anyone hear anything on GM moving locations?  

It's been about a year for me and I think I could probably be in for another year or so, but when is enough enough????
4 Responses
Avatar universal
Sorry to hear you are having such a tough time.

It is tough.

I am hoping some of the women who have elected to have double mastectomy might reply to you with their thoughts.  There have been a number of our members that have made this choice. I think they are probably the only ones who really know what the experience is like.

There are a couple of posts where I have read that a woman will have GM return to the grafted skin over her breasts, after mastectomy and failed restoration.  I do not think this is common occurence.

I don't know how active some of the ladies are right now, I think some have likely moved on to heal.  But I am happy to look up their posts and send the names to you through email, so you can go through their posts and journal entries to see how they made their decisions.  Some pretty 'tough cookies' as one used to say, they are young moms like you and I think you will find their thoughts helpful.

Wishing you healing - this really is a crap disease sometimes.

Jo
Avatar universal
Hello:
  I had a double mastectomy in the hopes that the abscesses would quit forming. My first mastectomy was in 2008, the second in 2009.    I am not a candidate for a reconstruct because of the GM.   The surgeon did tell me that the abdomen fat is the same fatty tissue as the breast but, I have had no abscesses there.  Thank the Lord because I have an over abundance of fatty tissue there.
   I am sorry to tell you that I still continue to have problems with abscesses.  The have not moved to my underarm but, are closer to that location.   I only have the problem on right side of my chest (touch wood).   Unfortunately,  I have another one forming at this time.
  A second surgeon who also deals with wound care told me that even with a mastectomy, there is still breast tissue present.
   Please remember that each person is different;  some respond to medication where others don't,  others have had no further problems after a mastectomy.   I'm weird.
I keep reminding myself that there are people worse off than I am and can joke (most of the time) about not having to wear a bra.
   Hang in there.....
  
1657910 tn?1302375661
Thanks for answering jackpat.  If you don't mind, can I ask a few questions?  Why weren't you a candidate for reconstruction?  My surgeon specifically said if we did this we would do full mastectomy with reconstruction.  And I didn't realize that even with a mastectomy they still leave breast tissue?  

I am afraid that I am usually on the weird side too.  I have it in both breasts and always have wierd medical things happen to me, so your comments do make me think twice.  Like I said I am not ready to make the decision yet, just trying to gather all my info.

Thanks again for sharing, I really appreciate it.
Avatar universal
I'm sorry you're going through this.

I'm now 6 months post-op after having a complete bilateral mastectomy. I'm blessed to tell you that I'm getting better and stronger every day, and that there are no signs whatsoever of any abscess, flare-up or anything of the sort. The fevers, debilitation, exhaustion and flu-like symptoms are gone.

It's taking a while to regain strength and stamina, but I was very sick for a very long time before the surgery, so that's expected. With a long-term illness, major surgery and the death of my dad in the middle of everything, my adrenal system went haywire, bringing on "Adrenal Exhaustion" and all the junk that comes with it. None of this is attributed to the IGM.

My doctor realized that he had to plane the skin down as far as possible without killing it. We did not spare the nipples, either. I think some do spare them with reconstruction in mind, and he & I both felt that would be a big mistake. He did not take the sentinel nodes. He was very thorough, taking the tissue from my ribs to the top of my chest, sides and everywhere between. He knew that if he left a thicker flap of skin, the risk of recurrence was higher.

As for always having IGM--the thing is that there is so little known about this disease. Due to the expectation that this is an autoimmune type disease, we know it's possible that it could rear its ugly head somewhere else in the body. But those are unknowns, and we can only deal with what's in front of us.

I have opted not to have reconstruction, and my doctor is very happy with that decision. Since some women have had problems after having flap procedures, I wanted no part of that. Also, to my thinking, if my body would attack its own tissue, what might it do to foreign implants? I'm pushing 50, and my husband is very supportive.  In fact, I was going to put myself through reconstruction for his sake, but he was dead-set against it. We both just wanted our lives back.

For me, mastectomy was the best solution, and I would make the same decision again. I don't want to sound as if I'm pushing this, because I'm not. Each of us is different, and some can live with trying to manage this disease. For me, that was no longer an option. I would have had it 2-3 years ago if I could have! Why Drs are so reluctant to take ugly, painful, exploding appendages that are making us sick to the point of not functioning in life is a mystery to me, but they are.

This network that JoJo started has made a huge difference in so many ways. Now we have information, and our various Drs are starting to communicate. In fact, one member has been asking for mastectomy and kept getting ignored. She PMd me, got my Dr's info and put her Dr in touch with him. By sharing information, her Dr found that the assumptions he based his "No Mastectomy" stance on were invalid, and so now he's willing to consider it for her. The most important thing is that now her doctor is LISTENING to her, and taking into account HER wishes.

Thank you, JoJo.

May God bless each of you,
Leane
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