worried

[lsucat]

My baby just turn five years old. I didn't breast feed him, but did breast feed my daughter who is now 9. Around Oct. 2010 my left breast became very sore and by Nov (a month later) I had several sections that had hard areas. The first thing I thought of was cancer. It turned out to be Granulomatous Mastitis. Since Nov. I've had 5 different surgical biopsy's where the doc constantly cut way the tumors and hard sections to make sure it wasn't inflammatory breast cancer. I changed doctors 3 months ago and he put me on steriods that took care of the hard, swollen areas. But I still have an area that is infected from surgery about 4 months ago. I also recently found a knot above the infected area. My doctor is also sending me to a plastic surgeon that assists him in surgery to go over our options. We are consulting Tuesday for a double mastectomy. Of course my husband doesn't want to even talk about that option and I'm scared to death. I would appreciate any advice.
Thanks,
Tara

[Red11483]

I am so sorry you had so many biopsies and cutting done. I think mastectomy is a hard choice and you are so strong to be considering it. There are some women here that have had mastectomies and have healed and had good outcomes that are probly more appropriate to talk to you about that option. I suggest reading through the forum u can find tons of info. Is the area infected have they tested the fluid to be sure? Unfortunately poor wound healing tends to be a part of this disease but definitely discuss it with your doctor. I hope you find some answers and will be praying for u!

[Pandora1962]

I am sooo sorry for the poor care you have received by the doctors so far. I love that the one is giving you the steroids. I know people don't like them, but you should start seeing results, it just takes time. I suggest you ask for a refferal to a Rheumatologist. I saw one yesterday and am so happy I did. He will be putting me on some interesting strong drugs, but his explanation of what is happening in my body, and how the drugs will be combating that and his confidence in their safety was very re-assuring. He drew 9 vials of blood and insisted on x-rays to look for some other things that go along with Granulomatous conditions. He asserted that Granulomatous diseases are an auto-immune condition and better treated by Rheumatology than Surgery, although he will not hesitate to use a Surgeon during the treatment if necessary. As far as your new abcess goes, please ask your doctor about doing a Fine Needle Aspiration instead of a biopsy. It will remove the fluid and the risk of infection is so much less. They can still send the fluid in for cultures if they feel it is necessary. My FNA'd abcesses healed up very nicely, as opposed to the biopsy sites, which became infected. It all does take time.

[eluriajen]

Pandora,

I am curious about what medications your doctor prescribed, if you don't mind saying. Also, would you let us know if anything is found in your bloodwork and xrays? It sounds like the doctor you saw was very intelligent...and that he was willing to take the time to explain some of it to you. That's wonderful! It is good to hear that you have found a doctor who will help you get some good treatment.

Wishing you the best,

Jennifer

[ONESS]

I  am so curious about your medications too, please share with us... I am also so glad to hear you  have a helpful rheumatologist.  Please keep us updated!  I have been seeing an acupuncturist and have found relief but still continue to have my breast surgeon aspirate abcess biweekly with a  fine needle aspirations.  Wishing you the best and hope to hear updates on your progress, it gives me hope.

ONESS

[ONESS]

I am very sorry you have experienced so many biospies.  Please have hope that with time it will be better.  For me I have my breast surgeon aspirate the abcesses, it does help and releases the pain pressure.  I will pray for you, please keep us updated.

Oness

[lsucat]

During the times of surgeries I was on several strong antibiotics. When I change to Dr. Robert Elliot (look him up online in Baton Rouge, Louisiana) he works with his wife Dr. Mary Elliot, he put me on a 7 day packet and gave me a shot. Then started me on 30 mg of prednisone. I stayed on prednisone for a few months increasing and decreasing until I was off. I haven't had any reoccurances of hard tissues in 8 weeks since I've been off of prednisone. But the problem is that I have a red spot the size of a half dollar that is draining and not healing. On top of that I just found a small tumor. I don't really want them sticking it with anything because "what if" its cancer. My first doctor told me I had GM stage 2. If it would have been stage 3 or 4 then it would have been inflammatory breast cancer. That scares the crap out of me. My husband had cancer 7 years ago and went through chemo and radiation treatments. It was really hard. Now we have two small children and I'm worried. Hopefully the surgeon Tuesday can put my worries at ease. I will ask about seeing a rheumatologist. I think that did come up. They took blood work and all tests came back negative. I haven't had an xray, but did do a MRI. About the med's, which med's do you want to know about. After the antibotics, I only took Prednisone and it worked for me. But I started with 30mg, then went up to 40mg, and back down. Thanks again. God Bless.
Tara

[JoJo45]

Hi -

I am glad you found us here and hopefully we can provide some peer support and information on our treatments that will assist you.

I am very confused that your first doctor told you you had 'GM Stage 2' and if it had been stage 3 or 4 it would have been Inflammatory Breast Cancer.  THESE ARE TWO VERY DIFFERENT ENTITIES.  He or she is wrong.  Granulomatous Mastitis does not turn in to breast cancer.  It does mimic the symptoms of Inflammatory Breast Cancer and vice versa, even clinicially, but the cells and the disease process are very different.  I have heard the chronic inflammation of cells is not great anywhere in the body and some believe it may eventually set the course for cancers...but that is a general point of view.  

SO, your GM will not worsen in to breast cancer. If you do have breast cancer, it might be present in conjunction with GM .  Therefore you need to be very sure of your diagnostic process to date.  Are you confident in your current doctors?  

The area you are describing as the half dollar non-healing and draining site is typical of GM, particularly after having had any sort of surgical cut in to the tissues.  The most widely accepted opinion is that GM is an auto-immune disease, meaning your own body is attacking your own tissues, having cells disturbed by cutting in to them, is therefore just going to provoke more inflammation, more immune activity, and generally the women who post here have noted this - areas of surgical biopsy or excision will often become chronically inflamed and very slow to heal.  Therefore, in conjunction with your treating physicians of course, IT IS VERY IMPORTANT to discuss management approaches that will involve the least disturbance of the breast tissue as possible.  This, in our patient forum, is something we have all seen a pattern of as being key to avoiding chronic ongoing areas of inflammation.

The prednisone therapy seems to have been quite effective for you, this is great.  Rheumatologists know the most about these corticosteroids and other anti-inflammatories and what sort of monitoring does need to be done on your tissues to ensure you are reacting well the to therapies (they are strong drugs), so I encourage you to get one on your treatment team.

I understand the fear, but not having your new 'tumour' looked at for fear it is cancer is not going to help in the long run.   You need to know just what you are dealing with, and then deal with it.  It can be done and we are hear to support you along the way.

Best wishes and keep us posted.

Jo  

[lsucat]

Hi Jo,
I'm definately having the new tumor checked out. I have an appt. Tuesday. As far as doctors go, I did change to better doctors. I'm currently seeing Dr. Robert and Mary Elliot at the Elliot Elliot Head Breast Research Center in Baton Rouge Louisiana. He did tell me the last thing he wanted to do was cut into any tissue due to the fact it would become worse. I do feel I'm in very good hands. I spoke to Augustsunbaby yesterday and she was a big help. I am so glad to have found this site. Thanks again.
Tara

[dadworried2011]

Isucat Please tell me if you received the document of Dr. Ahmet

Have a great weekend all courageous ladies

[lsucat]

Hi. Sorry, I didn't get it but Dr.Ahmet did return my e-mail. He answered my question and was very nice. My doctor has filed with my insurance for approval to a double masectamy.
They are shooting for next week. Your daughter is in my prayers. God Bless.
Tara

[jackpat]

Hi Tara....You are sure to go through a whole range of emotions leading up to the mastectomy and directly after.  A lot of us have had counselling to help us deal with all the emotions and trauma of GM and surgeries.     Prior to my first surgery (an open excision)(a large hole left opened and packed daily)  I was given a ephideral for pain.  It worked wonders.  Not all anethelogists are qualified to give the spinal but, it won't hurt to ask.    When you get pain medication, ask for a stool softener as well as the strong pain medication can make you constipated.  
  You're om my prayers.
      Pat