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granulomatous mastitis Community
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Avatar universal

Who with GM has had a mastectomy with reconstructive??

Hi everyone,
It's been a long time that I have asked a ?'s.  My last Dr's appointed in July we talked about a couple options about the state my breast was in. The first options is to have a mastectomy of my right breast with reconstructive surgery at the same time. She did state that this would be a guarantee the GM would be gone! My second option is to have surgery again and she would take all the dead tissue out. This could be half or more of my breast! She said with this option it's not a guarantee that she got all the GM tissue out. It does mean I'd have open wound and would have to do a wound vac again. My dr has treat five other women with this disease and two have done the mastectomy with great success. Two have done the second option surgery. She said it took them a very long time to heal and for the breast to fill in completely. I can't remember if they have be GM free or not?! Her other patient waited and did nothing and after a very long time(yrs) it resolved itself!
It was very overwhelming to hear the options! On the same day of that appointment I also meet with my GYN dr to schedule a hysterectomy which went really well and I'm four weeks into recovery and doing wonderful. So my husband and I just told her we need to pray about the options and that after I was done healing from the hysterectomy. I would come meet and talk some more. I do have an appt. with a plastic surgeon on sept 7th to talk and ask question. So please if you have had to make these choices?!?!
What questions did you ask? And if I have the mastectomy is it truly a guarantee that the GM will be gone forever?
Thank you all in advance for helping!~ Blessing to all of you
  
  
6 Responses
Avatar universal
I was going to answer your questions on my post, but I'll do it here :)

First, I know that the decisions you're facing are big ones, and I hope that you do take the time to pray on them.

Every surgeon I have seen has told me that there is no guarantee that a mastectomy will prevent the IGM from returning.  Even removing the entire breast will still leave some tissue, fat, etc., behind. However, they did all assure me that mastectomies have been very successful in preventing an IGM reoccurence in other patients.  

I had several surgeries on my left breast.  At the last surgery, my surgeon told my husband that she scooped my breast "like a melon". She took out a good part of the dead tissue, granulomas, etc.  Six months later, the IGM had returned and moved to my right side.  

Eventually, with a total of six surgeries, a year of methotrexate and a nearly two years of steroids, the IGM subsided.  After being IGM free for two years, I opted for the mastectomy as a means of preventing the IGM to the best of my abilities.  My surgeon said (and I agree) that it was best to do it while I was healthy, instead of waiting to see if it came back because there is poor wound healing with IGM, and doing a mastectomy during an active flare would be a bad idea.

I can't say that you should do this or that, but in my experience, a mastectomy gives more peace of mind than any other treatment.  Again, I don't think there is any "guarantee" that it won't come back, but I think there are enough cases to show that there is a better chance it won't.  

With all that said, a surgeon I did see recently advised me that since IGM is thought to be part of an autoimmune process, removing the breast could throw the immune system into shock and cause another autoimmune problem.  Sure enough, a month after my mastectomy, my doctor found a lump on my thyroid, which came back benign and now I'm waiting to see if it's affecting my thyroid function.  I can't say for sure that there is a correlation at this point.

Let me know if you have other questions.  
Avatar universal
Hi Noelle,
Yes, we will take the time to pray and not rush into any surgery. Sometimes I do feel the pressure from the Dr to have the surgery!  Also with my breast feeling really good right now:)  no pain, redness, inflammation and no abscess or developing abscess! I haven't been wanting to go on steroids because of the side effects. I don't need or want anything else to deal with. Did you have bad side effects from the steroids and methrotrexate? Do you feel that taking these helped you become IGM free for the two yrs? Thank you again!!!~ Take care    
Avatar universal
Hi there -

I am sorry for your pain.

A number of  the women on this site have elected to have mastectomy, after very carefully considering all options and what would be best for themselves.

Most have posted of good success, most do move on, and do not post much post-mastectomy and healing.

You can search the archives, or message me and I will be happy to provide you with names of those you might want to read their message history - there has been some very insightful and personal posting in this regard.

I wish you healing,

Jo
1729351 tn?1310054111
It's been a while since I've been on. I had a double mesectomy July 27th. As most of you know I went through several surgeries on my left breast and didn't want to stay on prednisone due to side effects. After my breast surgeon removed all breast tissue on both sides, I had a plastic surgeron come in and he inserted tissue expanders which we have been filling every week with 100 cc's. I'm now at a "C" cup and stopping. I saw him yesterday and he stated he wanted to wait 6-8 weeks to make sure everything is okay. He schduled my surgery for the Thursday before Thanksgiving to remove my tissue expanders and incert silcone bags. Once this is done, then I have to do nipple reconstruction and tatooing. So far, so good. Noelle your right, it does give you peace of mind. I've been to hell and back and I feel this is the best decision I could have possibly made. Good luck to everyone and I'll keep you posted on my progress. God Bless and stay safe.
Tara
1819745 tn?1317209701
I'm new here, and a little late in posting on your question.  Like Tara & Noelle, I chose to have a double mastectomy with immediate reconstruction in January of 2009.  I made that decision because the medication that was presented to me had side effects much scarier than the idea of losing my breasts.  I was tired of the constant, weekly doctors appointments and just wanted to be done with it.  I also had hopes of having more children, which would not have been possible on the meds.  I had the Tramflap done, where they took muscle and tissue from my stomach and moved it up to my chest.  I'm a couple sizes smaller, but the plastic surgeon did an amazing job!  I go for a mammo every year and follow up with my breast specialist.  To this date (going on three years) I have not had any reoccurance of the disease, but as Noelle states, it does not guarantee you 100% that it won't come back.  Unlike Tara & Noelle, I have not made the decision to get implants.  I think about it often, but push the idea away when I think about having another surgery.  I believe that it would make me feel better, but I also feel like I have put my husband and daughter through enough already.  Having a double mastectomy has definately had it's challenges, emotionally, for me, but I definately feel like I can live a more normal life without all the meds and doctors appointments.  

All I can say is, it is your body.  Continue to pray about it and you will come to know what is best for YOU!  Prayer is extremely powerful and is the one thing that has gotten me through the past few years!!  I will keep you in my thoughts and prayers and wish you all the best!!  - Georgette
Avatar universal
Hi Georgette,
Thanks so much for sharing with me! I apperciate it! My husband and I have prayed and really feel that doing nothing right now is best for me. I haven't had any abscess flare ups. My breast is doing the best it has in the last year. I feel really good. I had a meeting my breast surgeon and broke the news that due to the way my breast feels and that I'm not on any meds or there are no new abscess developing. I want to enjoy this time and truth be told I don't want to do surgery of any kind. I've been praying and believing that all this would just resovle itself and that's what I feel is happening. So I cancelled the appt with the plastic surgeon. It's been a month that I even seen the breast surgeon. I'm really enjoying that I don't have to see dr's every day or two also! I'll pray for you as well as all the others battling this disease that it would resolve itself and for wisdom to deal with all that comes as we wait for it to resovle itself! Take care and blessings,  
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