Diabetic Fibrous Breast Disease

[MJKJJJ]

I am a 32-year old type 1 diabetic (diagnosed at age 10).  I have several diabetic maladies and have recently been diagnosed with bilateral diabetic fibrous breast disease after having a baby last year.  It is thought that the lactation process may have triggered this autoimmune reaction.

After seeing a surgical oncologist at a local and well-respected cancer center, it was been recommended that I consider a double skin sparing mastectomy followed by reconstruction.

There is some underlying concern on the medical side about the healing process which is something that concerns me as well.  On the flip side, there is concern that if I do not have the procedure done, I am always going to have problems when I have annual breast cancer screenings, etc. and that given these lumps, cancer would be virtually undetectable at an early stage.  It is notable that I do not have a family history of breast cancer.

Is there any place where I can find out about women with this disease who have opted to undergo a mastectomy and subsequent reconstruction?  Since it seems like an awfully radical move, I would appreciate the opportunity to hear more about actual cases versus the opinions of doctors.

Thank you!

[netski]

Hello,

I have had type 1 for fifty years.  I had fibrous breasts throughout this time, had two lumpectomies, which were benign.  Every time someone new examined my breasts, they were flabergasted and wanted to send me to a surgeon.  I said no more surgery.  I am now 63 years of age, have undergone menopause and all the lumps went away after menopause.  I have a mammogram every year and have never had a problem.  This was my experience with this - perhaps your condition is different, but I would think twice before undergoing mastectomies.  I also saw Dr. Susan Love during this process, a well known expert, and she tole me not to let anyone do surgery without seeing her first.  Good luck...........

[feistydoll]

My name is Jenn and I am also a 31 year old Type I Diabetic.  I have been diagnosed with Diabetic Mastopathy as well.  Over the last 6 months I have had 2 large (3-4 cm) tumors removed via lumpectomy from both breasts.  They grew extremely aggressively.  I now have two more growing in both breasts.  I've seen three doctors  about this condition and finally got my diagnosis at UCLA Medical Center.

Since I am growing the two new tumors and my breasts are small to begin with (the tumors are already quite large), my Breast Surgeon recommended bilateral mastectomies with reconstruction. I am scheduled for this surgery on Wednesday.

I feel confident that this is the right choice for me because I also have a remote history of breast cancer in my family and the tumors are so large and so dense it's impossible to see behind them  on film.  My alternative is to live with the tumors and the fear that I may feasibly miss a breast cancer diagnosis because of them.

I would really like to be able to talk with other women who are experiencing this same condition.  I've searched and searched and had a difficult time finding much information on my condition because it's so rare, and I have yet to find information on someone else who has it and has decided to opt for mastectomy as a result.

Please feel free to email me at jenn at feistydoll dot com if you are interested in talking with me. I should be back up and about a week or two from now.

I am sorry to hear you're having this same problem, but perhaps we can be helpful to one another or to other women who are having the same issue as well.

Take care!

-Jenn

[JDRF-Team-LRS]

Hello mjkjjj,
As you may know, we are volunteers here and not medical professionals.  We all have considerable experience with Type 1, and some of its complications.

It is not all that uncommon for us long-time Type 1 women to develop diabetic mastopathy (breast lumps stemming from diabetes).  My siser (dm for 45+ years) & I (dm for 35+ years) both have experience with this, & we both have had lumpectomies.  Separately, (she's in the NorthEast US & I'm in SouthWest), our teams gave us different advice than your teams have given you and so it's quite possible that your condition is more involved.  Neither of us was close to any lactation process.  As your docs have told you, our annual mammo's and monthly self exams are a bit tough to interpret, but we've both been told that mastopathic lumps may well recur.  Neither of us has had subsequent surgeries to date, but that picture could well change.

About a year ago or so, a young woman posted on this forum about her recent experience (she had a double mastectomy and was about to be married when she posted - perhaps you can find her posting in the archives of this site with the keyword "mastopathy."

I hope that you can find a path that's both approved by your medical team and that gives you peace of mind for good health to enjoy your family for decades & decade & decades to come.

Here are a few reliable websites with information about the condition & treatment options.  If the web addresses wraps to 2 lines on your screen, be sure to copy/paste the whole thing into the address bar ...

From the UK:
http://www.diabetes.org.uk/infocentre/inform/mastopathy.htm
http://www.cancerlineuk.net/ncm.aspx?node=glossary&letter=3 (danazol treatment)

Research article:
http://care.diabetesjournals.org/cgi/content/full/25/1/121

Several NIH articles on mastopathy
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

Lay discussion of one NIH article:
http://www.typeone.com/TypeOne/diabetic_mastopathy.htm

From 2003:
http://www.defeatdiabetes.org/Articles/breast031030.htm

Depo-provera treatment -- NIH research study:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8030291&dopt=Abstract

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9441542&dopt=Abstract

While this background & treatment information may be helpful, I'd also encourage you to seek out folks local to you for emotional support.  There are so many emotions that may be flooding your thoughts and folks who've "been there" will be the best folks to encourage & support & listen to you.  

I'd like to recommend that you reach out to a sister initiative sponsored by JDRF called the Online Diabetes Support Team (ODST).  visit the JDRF website (http://www.jdrf.org) and click on the link to the site.  You'll be asked to provide a bit of background, location & email contact information -- and then the volunteers there will find someone that you can connect with on this very personal topic.  Since we work closely with ODST folks (and some of our volunteers are on ODST also), pls do mention that we referred you.  Our forum is much too public for folks to safely post identifying information (and our rules prohibit it).

My heart goes out to you.  I wish you strength & loads of support as you decide your next courses of action.