Hello everyone :)

[leanek]

I've had IGM for nearly 3 years. After several surgeries and stumped doctors, last year I was blessed to have found a breast specialist who knew what this is.  We've tried the usual treatments (except for the high-dose steroids because I can't take them), and even gave Tamoxifen a try. (Didn't work.)

4 weeks ago I had another surgery to drain the abscess but  *nothing came out!*  All the same symptoms were there: pain, abscess, high fever, etc. When he went in to drain it, he was shocked, to say the least. He did remove a large mass of benign tumors, cysts, sclerotic tissue, some kind of strange scarring, and the sinus.

Several months ago my Dr. & I decided to try to wait this out for 5 years or so, until after menopause. He felt there was a possibility that it could resolve itself then. After this last go around, that's no longer an option. It's been 6 weeks and I'm still sick, feverish and basically non-functioning.

The decision has been made to undergo a bi-lateral mastectomy, including both nipples. He wants to spare the skin. After reading here that even after mastectomy some of you have had recurrence, I balked at this. He insists that if he removes every bit of the skin he can without killing it that the chances are good that it won't come back.

I'm 48 years old and have had 3 years to get fed up with this. The Lord has blessed me with a breast specialist who is the professor and department head at St. Louis University. I have a supportive husband and friends, I don't have cancer or have to deal with the horrors of chemo and radiation. Although no woman wants to have to face this, I'm at peace with this decision. I meet with the plastic surgeon this afternoon and expect to have the surgery within the next few weeks, with reconstruction to follow.

My heart breaks for those of you who are suffering so with both this whacky disease and the awful treatments that often come with it. If I were 20 years younger, I'm not sure what I would do. I am praying for the best possible treatments and outcomes for all of you. This forum has been a huge blessing and I'm grateful that it's here.

Leane

  

[leanek]

I'm not a social networker or internet poster, either. What is a journal site? I will post however or wherever you recommend, but, yes--I do plan to be active. It is very important to me to help others with this disease however I can. I remember the early days when I was afraid, confused and getting nowhere with various doctors and surgeons.  My heart aches for every woman with this disease, but especially for those who are younger and raising small children.

I'm thrilled that both you & Amy may be able to wait this out--that is such wonderful and encouraging news! If this current episode hadn't changed everything, I would be doing the same thing.

For what it's worth, my Dr.'s theory behind waiting it out was that, after menopause, the breast tissue often turns to fat, thereby removing the glands and tissue this disease attacks in the first place.


Praying for your best,
Leane

[JoJo45]

Hi Leanek- our messages just crossed.

I am totally in agreement about the value of documenting our experience, and that this will benefit others.  I am generally a private person, I do not have a presence anywhere on the internet or social networking, however I have been active here and have created www.granulomatousmastitis.com in order that there is some profile for this disease and as you have said, someone getting this diagnosis has some other people to share with, some patient experience to reference and inform their decisions.

Thanks for being active - I can create a journal site on www site for you if you like, or otherwise if you want to be active there, just let me know.  Things are just taking shape.

I am having other health problems right now, so have been laying low a bit and not getting too much done.

JoJo

[JoJo45]

Hi Leanek, Hi Amy -

I too hope all goes well with your procedues.  A few women here have had mastectomies and from what they write I think they are actually have good healing. I would stay positive about that approach and outcome.  WLD, MiriamMK, Twig71 would be good women for you to message.

I have had IGM since 2007, but lately it seems to be in remission.   Fingers crossed. I am almost officially menopausal (7 months now since a period I think, if not longer), and I have noticed a change in my breasts generally, and I think the hormonal changes could also be easing my IGM activity.  So I think your hunch is right there.
Wish you all the best, jojo

[leanek]

Thank you for your response. To be clear, I read the experiences of some who have had recurrence after mastectomy here on the Medhelp site:

http://www.medhelp.org/posts/Reconstructive-Surgery/granulomatous-mastitis-returns-after-double-mastectomy-with-abdominal-flap-reconstruction/show/995120

http://www.medhelp.org/posts/Breast-Cancer/Granulomatous-mastitis-/show/329870

I'm scheduled for the bilateral mastectomy on Oct. 18. Although it hasn't manifested itself outwardly in the R breast yet, there is most definitely something happening there. Currently I'm very sick with high fevers and extreme fatigue. Under normal circumstances surgeons won't operate under these conditions, but my Dr. & I agree that I'm not likely to get well until he gets these breasts removed.  The reconstruction will have to wait until I'm in better health. Also, since we're fairly sure he's going to find a mess when he gets in there ( that "non-infection" infection...), the plastic surgeon would be unwilling to put in the expanders, anyway.

I truly believe that one of the best ways I can offer support is to be as specific and thorough as possible in relating my experience with this whacky disease, to help both those currently in this battle, as well as those who will (unfortunately) end up here in the future. I have observed much about this in the 3 yrs. (since Feb. 2007) I've had it, and have charted fevers, symptoms, explosions, etc.

When I have the energy, I hope to relate everything from the beginning up to now. There is so little information about this disease, and, sadly, it is we who are the "experts". The best chance we have is to go into this armed with the experiences, facts and outcomes of others, and a clear understanding of what has worked and what has not. Otherwise we end up either as guinea pigs or dismissed completely, and that is just unacceptable to me.

Leane

[Amy669]

Welcome to this group and thank you for sharing in such detail.  I am 53.  I got GM over a year ago and am in a limbo state between getting better and getting worse (I am not going in either direction).  I also have a suspicion that getting through menopause  would be a great thing for my fight with this disease.  I am not there yet. You mentioned that someone in this group still had the disease even after double mastectomy?  I don't think I read that from anyone in this group (I could be mistaken).  But I did read about that story somewhere on the internet.  But yes, people in this group have had recurrences after excision.  Did you have the disease in one breast or both?  Best of luck in the near future with the procedures!  I hope all goes well.
Amy