Toronto Breast Care Centre

[Pjpat]

Hi:
  I am so grateful to find this forum..  I was diagnosed with granulomatous mastitis in Aug. 2007.   I have been on several antibiotics most of which I have suffered anaphylactic reactions so, antibiotics are pretty much out of the question.
    Jo, I believe that you mentioned the Toronto Breast Care Centre;  I would like more information on it so that I can pass it on to my doctor who keeps telling me he doesn't know who to send me to.
   I initially thought that I had a bug bite that created an abscess.  I had that drained three months in a row before it was kept open and packed from the bottom up by a home nurse.     I had two wide open incisions then a mastectomy of the left breast in Oct. of 2008.   In May of 2009,  I had the right breast removed as well as a lump on my breast plate.   Each pathology report came back as granulomatous mastitis.    In July of last year, I had basically another lumpectomy to "CURE" the mastitis.   I still continue with daily visits by a nurse who packs my wound.   A wound specialist has used silver, manuka honey,  AMD (an antibiotic laced packing material) as well as gauze packing.   In the past couple of weeks  I have had several lumps appear near my right armpit.  they became abscessed and were lanced.  Now the nurse is packing three different holes.  I have been tested by rhumotologist, allergist;  I will be going to Hamilton In October for some specialty blood workup.  I had mentioned to my doctor about the prednisone before and low dose chemo but, he said that there were too many side effects.  So instead,  I have my life on hold and fell into a major depression.  Thank you for this forum.

[Pandora1962]

I just looked up psoriatic arthritis one the web. I am sure you must be misserable. It soulds really serious. I do hope that you will find help from us on this forum.
And thank you for changing your profile. I feel I have much more in comon with you already.

[JoJo45]

Hi Barbados:

I have been tested so thoroughly I am sure this has come up as well.

Through spinal biopsy, etc., I have been formally diagnosed with degenerative disc disease, with a lot of inflammation.  I also have arthritis in my hip and knee on the right side.  I believe my doctor thinks these things are connected, however the science is just not there yet.

Jo

[barbados95]

Hi, I have just joined this forum having been diagnosed only last week in Belgium. I was also been diagnosed with psoriatic arthritis 2 years ago which I have been told is linked to GM. So you know if you have been tested for this?

[Pjpat]

Thank you,  Thank you, Thank you..Just knowing that there is someplace where I can get started is wonderful.  I was at my rope's end.
Cephalex/rosephine is one of several antibiotics to which I have had an anaphylactic reaction; it scares the heck out of the hospital staff I can tell you.
    I will need to go to my doctor this week for the 2 abscesses that are popping up and will ask him to make a referal.  
    thank you so much Jo
  

[JoJo45]

Hi

I am sorry to hear that your GM has been so invasive.  I can only imagine the pain and stress you have been enduring.  I am wishing for you to have some relief finally.  I have been seeing a medical social worker for some time, as a member of my disease management team, and find it incredibly helpful.  This disease can be so isolating and overwhelming, I really feel having some emotional and moral support just for you, to discuss the experience, is very important.

I have had wonderful care since 2007 at the Henrietta Banting Breast Centre at Women's College Hospital in Toronto.  I have been seen by Dr. Tulin Cil, Surgical Oncologist and also followed by Dr. Pamela Lenkov.  Dr. Lenkov is I understand currently seeing one other case as well as mine.  The pathology as this hospital is also considered first rate in Canada.

The phone number for the breast centre is listed here along with other general info:

http://www.womenscollegehospital.ca/programs/program62.html

I am sure they would be pleased to see you and I know they are struggling to understand the disease.

There have also been a few cases treated at Sunnybrook Hospital in Toronto by the Rheumatology department.  I elected to continue my care at Women's College and have sought out an independent rheumatologist at Western Hospital who assists in my care and deals with my spinal inflammation/and oversees my breast inflammation drug management.  I chose him because he is smart and a researcher in immunology and rheumatology -- I wanted someone with an open mind to lead my care decisions with me.

I have found the care at Women's College to be very compassionate, professional and engaged with me in finding the best answer for me, with very minimally invasive approaches, they don't believe in disturbing the breast, other than when absolutely necessary.

I was thoroughly biopsied, managed with Cephalex antibiotic (500 mg 4 times day) during each flare to prevent secondary infection, (I was cultured for everything and all is sterile).  I do find the antibiotic helps a bit during flares.  I do not take antibiotic other than when I have an active abcess or drain.  We also aggressively drain any new areas of inflammation through guided ultraound drainings by a radiologist, and this to me has been key in managing flares.  

I seem to have developed systemic inflammation with joint pain, stiffness and serious inflammation, particularly in my spine (not fun).

I have been tested for every inflammatory disease: sarcodosis, TB, Wegner's, Lupus, MS...you name it and nothing every comes up.

I am followed quite agressively with breast MRIs, ultrasounds, and when I can tolerate it, mammogram.  

Anyway can't recommend the breast centre enough.  I trust their care and this has given me precious peace of mind and allowed me to focus on healing without fretting about whether I am properly diagnosed or managing things effectively.  I tried to be the expert for awhile, was happy to pass that role along to the doctors.  Good Luck and let me know if you have any other questions or I can assist you in anyway.

Jo

[Pjpat]

My family and friends are absolutely wonderful and are supportive.  I am hoping that I hear where the Toronto Breast Care Centre is located.  Is is affliated with one of the hospitals or a stand alone centre.   I am only about 4 hours away and look forward to seeing someone who has dealt with this disease.  Early this evening another abscess broke making it 4 holes in my chest.   This is as worse as it has ever been.  I am due to go on vacation in about 2 weeks and don't want to cancel another trip.  I am fortunate that I am going to a friend's place;  a friend of hers is a nurse and has agreed to come in and pack my wounds.

[eluriajen]

I'm so sorry to hear about everything you have been through!

It sounds to me like maybe getting a second opinion would be a positive step for you. It might be especially helpful if you could be seen by someone who has treated this disease before, although that is often difficult to find.

I completely understand why you feel depressed. If there is any way that I can help...if you need to talk, or some encouragement, or anything like that, please just say so. Try to hang in there. I know it is so difficult, as feeling so sick and having these things happen to your body is completely depressing and discouraging. Do you have people in your life who you can lean on?

Jennifer

[Pandora1962]

So good to hear from you! I so hope that the place Jo recommended in Toronto brings you relief. Have fun reading this fountain of information. Above all, keep us posted! We care.