What to do, what to do

[dfudgie]

Hi.  My name is Dee.  I feel that my story is a bit different from most.  I'm 44 years old, never breast fed, and my "baby" is 22 years old.  I was recently diagnosed with IGM on September 4, 2013.  I have been dealing with this issue since August of 2009.  Yes, 4 years of flares that come and go with no rhyme or reason.  It first started with my right breast, and in the past 3 months, I am now having the same problem with the left one.  As I type this, I am dealing with a flare starting in both breasts.  I have seen over 50 doctors in 4 states and D.C.  I have been told that I have seen some of "the best of the best".  Well, not in my opinon, but that is a different story altogether.  Anyway, like I said, I've seen many doctors and have had too many tests with no results.  I was lucky enough to finally find a doctor who knew what this was and diagnosed me.  
My question is--what do I do now?  I have an appointment with my breast care doctor on October 18th to discuss our "plan of attack".  My plan is to cut them off and be done with it.  I have a feeling his plan may be different.  I have already been on just about every antibiotic and steroid known to man.  None of them have worked.  The best case was I had relief towards the last days of medication, but as soon as I stopped, it came back full force.  
Since I have found this forum, I no longer feel like I'm alone with this disease.  No one that I know personally has even heard of it, let alone been diagnosed with IGM.  In my mind and in my soul, I feel this is the only choice I have to get my life back.  I haven't worked since 2009, I can't enjoy my two grandsons (ages 3 and 1), I'm so exhausted after even shopping that my husband (who works 9-10 hrs a day) goes to the store, he cooks, he cleans, he is WONDERFUL, but I'm sick and tired of being sick and tired all the time.
Is my decision to talk my doctor into doing a double mastectomy the right one?  My husband backs me 100% if I have surgery.  We both just want our normal lives back.  Any advice or comments would really help.  Thanks!!

[Sush560]

Hi, don't worry, we all understand what you are going through. I can suggest one last option before surgery. I am successfully slowly recovering from IGM using homeopathy and a very strict diet. If you can manage to find a very reputed homeopath who is confidant with your case, you could give it one last try. Meanwhile try following the diet I follow very strictly for at least two weeks. You can read my posts on homeopathy. My aunt from India has sent me the medication and adjusts it almost every day over phone. It's complicated treatment for me. She claims to even cure cancer patients, practising since 1970 and extremely good. So you need similar or better.

One thing I can tell you that since I started the homeopathic diet, I realise food plays the biggest role. If you really want less of inflammation, and want try my diet: i warn, its really tough. I eat only the following : 400ml of whole org. milk cooked with tapioca, a litte salt and 1/2 tsp sugar. Not milk on its own btw. Divided twice a day. Two boiled eggs divided twice a day. Boiled rice. Only vegetables that I can eat are gourds, bitter gourd, green (and ripe)papaya, zukini, marrow and cucumber...all veg peeled and cooked with a drop of oil, little well cooked onion, garlic, turmeric, salt and little cumin. Boiled would be good but inedible! Org pure Butter half spoon. pure ghee. THAT'S IT. If possible, all should be organic, absolutely nothing ready made as they all have preservative and I get an immediate inflammation, eg if I eat bread or noodles. I lost a lot of weight though I eat huge amounts of rice. Due to no fat and oil. But no inflammation, my breathlessness, fatigue all gone yahoo! Lump slowly decreasing with homeopathy...let me know. If u tried or so long, try this as last try. Otherwise even I would happily get mastectomy to get back my life.  Keep strong.

[dfudgie]

Thank you for keeping me in your thoughts....

UPDATE:  Met with my doctor on the 18th of October.  Had a flare in both breasts at the time of the appointment.  We discussed all of my options and I know have an appointment with a surgeon on the 8th of November.  The "wait and see" option has been done for the last 4 years.....the "medication" option wasn't a good choice for me--between some of the side effects, reactions to other medications I have to take (migraine, asthma), and the fact that I've been on many of them throughout the last 4 years.....so that leaves the "surgical" option.  The appointment with the surgeon will determine exactly what type of procedure I will have based on my case of IGM....the doctor also told me that he would label my case as "acute chronic IGM".  A few of the options that I have been informed of consist of the basic removal of just the affected area (small "wedge" removal) to a double simple mastectomy.  Will update again after appointment with surgeon when all of my options have been given and a plan is formed.  I hope my story helps someone out there....I know that reading everyone's story on here has helped me realize that I'm not alone in this and that has helped me mentally and emotionally.  Thank you to everyone for sharing something that is so personal.

[nadianomas]

I simply feel for you.  Years of not knowing your diagnosis must be one of the most difficult things to bear.....  Obviously, not to mention the pain, the test and medications you've had to endure and the probably unnecessary procedures you've encountered.  As to what to do now?  I too was frustrated when my doctor told me for months on end we would just take a watch and wait approach.....  In my case, thankfully, it seemed to have paid off so far.  In your case, you've already done so much for so long, that I just don't know what the right answer would be.  Perhaps someone who has undergone a double mastectomy after being diagnosed with this illness would be able to advice you in that regard.  What I do know is that this being an inflammatory disease, all that we do to our body seems to affect it.  Thus, maybe doing nothing but following the best possible nutrition, exercise (I like dancing or walking) and trying to rejuvenate yourself as best you can for a few months before making the mastectomy decision, may be an option......  Then again, maybe you really would rather see if a double mastectomy may be warranted at this point.  I will keep you in my thoughts......