Diabetic Mastopathy

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Topic Title: Diabetic Mastopathy
Created On: 02/01/2010 04:02 PM

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 07/05/2013 02:30 PM

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FatCatAnna

Posts: 416

I can't understand why the surgeon is telling you to wait 8 years. I'm wondering if it maybe due to the fact that after menopause - this conditions lessens (the pain is less or gone away). I was told this by one of the many doctors I saw as I was trying to figure out what I had (did you read my blog here at Diabetes1.org - if not - here's the link). Have you gone to seek a 2nd opinion? I know how painful it is - this is the reason why in the end - my surgeons as you'll read in the link above - agreed to do the surgery - plus like yourself - each time surgery was done to remove yet another lump - and it wasn't cancer (phew - at least we don't have that) - the scarring that would form would creat more problems. Again, read my blog link above. Seek another opinion. It's your health - take action!!!I don't know your "true" name by your user name you are using here (totally understand that to protect your privacy) - but feel free to look for me on Facebook - I go by the same name of FatCat Anna. Okay?


-------------------------
Anna from Montreal, Canada
************************
Type 1 since 1967
Currently switching back forth between insulin pump/MDI (whichever one I can afford!!)
A1C 6.2%
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 07/05/2013 12:11 AM

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s_unangst

Posts: 2

I am really scared and have been for a long while now. I am 32 and have had diabetes for 24 years. My mother (a nurse with masters in diabetic education) struggled my entire chilhood and teen years to get my diabetes under control. My body seems to love to change frequetnly so my insulin in turn has to change very frequently. I have diabetic complications. Two years ago I found a small lump inm each of my breasts the size of large marbles. they were painful to the touch. I was examined by a doctor and they said that it would be best to just keep an eye on it for any changes. After 6 months they had grown to the size a large peaches and the pain steadily got worse. I was seen by a surgeon and the scheduled me for a biopsy of both breasts. The surgeon diagnosed it as fibrous tissue disease. I followed their dietary instructions and did my best to bring my diabetes under tighter control. 2 months after the surgery I noticed that lumps were forming near the incision sights. the doctor told me that it was scar tissue and to massage them as deep as I could to break the tissue up. Obviously this was extremely painful. 4 months ago I had had enough! I went back to the same surgeons office but i requested a different doctor. Within five minutes of the examination she diagnosed me with diabetic mastopathy. She told me that there is no treatment and no cure! That my only option would be to get a full mastectomy. I was horrified, but after a few weeks of contemplation I realized that the pain was just too much. I scheduled to have a core biopsy done about a month ago. This was under the understanding that we were on the path to do a full mastectomy. the core biopsy showed no evidence of any malignant tumors but the doctor let me know that she would no longer be willing to do the mastectomy at this time and that she suggested I wait 8 years before getting this done! What?!!!!! I asked her why and she would not give me a straight answer. I let her know that I am not having anymore children and that my husband had a vasectomy. That I had already talked to family and other health professionals that this was the route that would be best for me to take. She insists that I wait 8 years. I am scared because the pain is gettting much worse and the hardened tissue is growing at a very rapid rate. My left breast is completely hardened and half of that nipple too. My right breast is 3/4 hardened and is beginnign to deform. There are many days that i struggle with the pain. it hurts to wear a bra and it hurts not to wear one. my husband is afraid to touch me and my children and friends are afraid to hug me because the sudden pain makes me wince or cry out! When the intial pain occurs it can last for hours after and nothing helps. not tylenol or ibuprofen or evening primrose. Nothing. I dont know what to do and most nights I am scared that if they do finally agree to do the mastectomy that there will be no chance of being able to save my nipple! Does anyone have any suggestions? I cant take anymore complications! Ive already had 9 eye surgeries and have kidney disease and celiac disease and cant keep my wieght up. I am a very low weight but eat 2100 calorie diet sometimes up to 2300!
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 07/05/2013 12:11 AM

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s_unangst

Posts: 2

I am really scared and have been for a long while now. I am 32 and have had diabetes for 24 years. My mother (a nurse with masters in diabetic education) struggled my entire chilhood and teen years to get my diabetes under control. My body seems to love to change frequetnly so my insulin in turn has to change very frequently. I have diabetic complications. Two years ago I found a small lump inm each of my breasts the size of large marbles. they were painful to the touch. I was examined by a doctor and they said that it would be best to just keep an eye on it for any changes. After 6 months they had grown to the size a large peaches and the pain steadily got worse. I was seen by a surgeon and the scheduled me for a biopsy of both breasts. The surgeon diagnosed it as fibrous tissue disease. I followed their dietary instructions and did my best to bring my diabetes under tighter control. 2 months after the surgery I noticed that lumps were forming near the incision sights. the doctor told me that it was scar tissue and to massage them as deep as I could to break the tissue up. Obviously this was extremely painful. 4 months ago I had had enough! I went back to the same surgeons office but i requested a different doctor. Within five minutes of the examination she diagnosed me with diabetic mastopathy. She told me that there is no treatment and no cure! That my only option would be to get a full mastectomy. I was horrified, but after a few weeks of contemplation I realized that the pain was just too much. I scheduled to have a core biopsy done about a month ago. This was under the understanding that we were on the path to do a full mastectomy. the core biopsy showed no evidence of any malignant tumors but the doctor let me know that she would no longer be willing to do the mastectomy at this time and that she suggested I wait 8 years before getting this done! What?!!!!! I asked her why and she would not give me a straight answer. I let her know that I am not having anymore children and that my husband had a vasectomy. That I had already talked to family and other health professionals that this was the route that would be best for me to take. She insists that I wait 8 years. I am scared because the pain is gettting much worse and the hardened tissue is growing at a very rapid rate. My left breast is completely hardened and half of that nipple too. My right breast is 3/4 hardened and is beginnign to deform. There are many days that i struggle with the pain. it hurts to wear a bra and it hurts not to wear one. my husband is afraid to touch me and my children and friends are afraid to hug me because the sudden pain makes me wince or cry out! When the intial pain occurs it can last for hours after and nothing helps. not tylenol or ibuprofen or evening primrose. Nothing. I dont know what to do and most nights I am scared that if they do finally agree to do the mastectomy that there will be no chance of being able to save my nipple! Does anyone have any suggestions? I cant take anymore complications! Ive already had 9 eye surgeries and have kidney disease and celiac disease and cant keep my wieght up. I am a very low weight but eat 2100 calorie diet sometimes up to 2300!
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 03/08/2012 07:47 PM

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FatCatAnna

Posts: 416

Hey Marissa - I wrote about this a few years ago here at Diabetes1.org - here's the link - http://www.diabetes1.org/blogs...ndly_like_to_call_them . I am like you, where in the beginning, I wasn't able to find anyone else with a similar condition. As you'll read in my blog - I was the one that discovered what my condition was in the end - my breast surgeon and technicians couldn't figure out what was up. Like you, it was never cancer - but still - I kept on being slice 'n diced to where the breast was basically nothing (and I wore a form in my bra to look like I had a breast). Again, the blog I wrote hopefully explains it abit better for you.

I have heard from other diabetics - who have similar problems. What we've come to the conclusion - and other medical reports I've come across - is that some diabetic women (Type 1) seem to get this condition when they're blood sugars have run high for awhile. Mine probably did, before the advent of the blood glucose meter - and even when I was using one - I wasn't leading such a good life with diabetes.

I did have reconstruction done as you will read in the blog. No problems since then - I will have forever a nice perky breast on one side and a floppy older breast on the other side . I know my other breast is having similar problems now - but since I know what it is - and it's not as bad as before - I'm not so worried about it. I still get my mammogram done every year - and keep a close eye on things - but will not undergo any exploratory surgeries like the surgeons did in the beginning - instead - now it's a simple core sample that is taken - less evasive then surgery. Supposably too, from what I have read about our condition - with menopause - these lumps go down in us - so I'm in peri-menopause at the moment (I cry, I laugh, I get hot all in 1 hour - oh joy!).

Hope this helps abit - and let me know if you want to contact any other diabetics - who maybe able to help you feel more at ease - I'll be able to contact them for you - if they don't reply to this post first (I'll be posting this forum discussion on my Facebook page - entitled The Roller Coaster Ride of Diabetes).

Take care and if you are on Facebook - friend me there if you wish!




-------------------------
Anna from Montreal, Canada
************************
Type 1 since 1967
Currently switching back forth between insulin pump/MDI (whichever one I can afford!!)
A1C 6.2%
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 03/08/2012 06:46 PM

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Marissa1978

Posts: 1

A few years ago I went to my doctor when i found a hard lump in my right breat. He referred me to a surgeon who removed the mass. He advised that he thought it was Diabetic Mastitis. Within 6 months I discovered another mass in my right breast. About 6 months ago I found a very large mass in my left breast. I went back to the doctor. This time the doctor did a number of mammograms and sonograms and finally performed a steriotactic breat biospy. Her determination was that i have diabetic induced mastopathy. No one can seem to tell me why this happens. Fortunately all of the 6 core samples she took where beign which is great however I still have no answers. All of the medical professionals all say the same thing. This is rare and we do not know anything. No one within 200 miles of me has even seen a case. Is there some sort of preventive measure? These can at times be quite painful. I have been told that if they continue to grow and all of the breast tissue changes a mastectomy is an option but not one i am wanting to persue. I am young, 34 years old. How uncommon is this? Is it best to leave them in? I cannot seem to find much information on this condition either. Should i be concerned? I do not know anyone who has been diagnosised with this odd condition. Do you where i can find the most helpful information? thank you
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 01/10/2012 12:19 AM

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pear

Posts: 1

Type 1 diabetes results from the body's failure to produce insulin, and presently requires the person to inject insulin.Other forms of diabetes mellitus include congenital diabetes, which is due to genetic defects of insulin secretion, cystic fibrosis-related diabetes, steroid diabetes induced by high doses of glucocorticoids, and several forms of monogenic diabetes.

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 02/07/2010 02:04 PM

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FatCatAnna

Posts: 416

In my 30's I found that my left breast was dipping in, and went to have a mammogram. It turned out that I had a suspicious growth, and I had a lumpdectomy performed the next day. Drainage tubes and all, I went back to work, feeling very happy that all was well (not cancer). Over the next few years, growths kept on reappearing, breast tissue kept on dipping in, lumpectomies were performed over and over again. The growth in my breast that were removed were described as "hard gristle", and with the last removal, it was 5 cm in length. During this time, as noone seemed to know what it was, I came upon the discovery of it being diabetic mastopathy. The breast surgeon had never heard of this, so I loaded his desk up with various information I had gathered. The lumpdectomies that were performed over the years should have not been repeated, sad to say, but left untouched, as like in many women (nonD and D) - once menopause hits, these growths are supposed to stop. I did not have much healthy breast tissue left at this point in time (I was now wearing a prothesis to look "normal") at this point in time and growths were continuing (and very painful - a good sign that this was not cancer - as most cancers are a silent killer), it was decided amongst all the surgeons involved, to perform a subcutaneous mastectomy. This is where the breast is left intact, all the stuff inside is removed. Because of what I considered a rare case they felt it best to avoid further problems down the line and possible cancer (I am supposed to be in medical reports as to the amount of lumps that were removed from my breast ).

I had the mastectomy performed about 5 years ago, it has taken time to adjust to having a "breast" again. I wish the doctors/surgeons had known right from the beginning what I had, but alas, they didn't until I discovered on my own what I had, but at least I have hopefully saved other diabetic women from facing this unnecessary surgery. Now, core samples can be perfomed in the doctors office, without unnecessary slice 'n dice rather then invasive surgery which I had to incur.

I often will tell people that I did suffer from cancer, as I felt all the emotions that they perhaps would go thru', unfortunately I had to deal with the emotions on my own, as no support was available for me, sad to say. I did go thru' some pretty tough emotional times with this, but the main thing is, it was not cancer, and I'm still alive and kicking with my new Dolly Parton (I wrote a blog about it here at Diabetes1.org - http://www.diabetes1.org/blogs/Annas_Blog/The_story_of_my_Dolly_Partons_as_I_fondly_like_to_call_them



-------------------------
Anna from Montreal, Canada
************************
Type 1 since 1967
Currently switching back forth between insulin pump/MDI (whichever one I can afford!!)
A1C 6.2%
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 02/01/2010 04:02 PM

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slachapelle

Posts: 47

We recently received a request to open a discussion on diabetic mastopathy, so the following is some information on this rare condition that affects Type I diabetics. Diabetic mastopathy is a condition that is characterized by lumps of fibrous breast tissue. The lumps feel hard to the touch and can appear in one or both breasts. These lumps are not tender. This condition usually arises in pre-menopausal women with Type I diabetes, although it may also be seen in men with Type I diabetes. It is more common in people who have thyroid disorders and damage to the eyes, kidneys and heart. Although the cause is not fully understood, the material may be deposited in the breast because of high blood glucose levels. To confirm this diagnosis and to rule out breast cancer, your doctor may schedule a mammogram or ultrasound of the affected breast. He or she may also schedule a fine needly aspiration of the lump, where cells or fluid from the lump are removed using a thin needle, or a biopsy, where cells are again removed from the tissue. This fluid or tissue will be sent to a lab to make sure the tissue isn't cancerous. Because lumps often reappear after removal, lumps may be allowed to develop and remain in the breast unless they become uncomfortable. The number and size of lumps tends to increase as women progress through menopause. Any breast lump or abnormality is cause for some concer, and should be checked out by your doctor immediately.

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