Diabetes and Lumpy Boobs - My experience of Diabetic Mastopathy
[* Note: If you discover a lump in your breast, please have it checked as soon as possible. The lump I found turned out to be Diabetic Mastopathy but since writing the article below in early 2003 I have had friends in their late thirties diagnosed with breast cancer. It's still a risk for for women with Type One Diabetes and the sooner it is detected the better.]
FIVE YEARS AGO I NOTICED A LUMP in my left breast. All the warning bells went off in my head and time stood still as I thought, "Shit, this can't be happening to me...". My boyfriend at the time tried to reassure me by saying, "Oh no, it can't be cancer. You already have diabetes." Nice thought but I was way too cynical by then to believe him.
I was almost thirty at the time and had been living with diabetes for 18 years, with my HbA1Cs hovering around the 9-10 mark. Later I was to discover that this level of blood glucose control and duration of diabetes is typical in the 13% of women with diabetes who develop the breast condition "Diabetic Mastopathy". Back then however, I knew nothing about diabetic mastopathy.
I was sent to a radiography centre to have my lump checked and I was highly traumatised by the process. The radiographers shaking their heads after each test and saying "oh this doesn't look good" before bidding me farewell, did nothing to quell my initial state of panic. It was only a fluke that before my next appointment with the breast surgeon to decide what to do, I stumbled on an article on the American Diabetes Association web site titled, "Painless Lumpy Breasts Seen As Little-Known Diabetes Complication".
Spot on. I'd found it. I was sure this was me. The article explained that in mammograms and ultrasounds (the typical methods for diagnosing breast conditions) Diabetic Mastopatjy looks suspiciously like cancer although there is no link whatsoever with cancer. Fine Needle Aspiration, often the next diagnostic method in the doctor's bag of tricks, can be difficult to perform due to the thickness of the breast tissue. It can be hard to get enough tissue to make a diagnosis.
Armed with this new information I reported back to my breast surgeon, waving print outs from the internet at him with glee. I cited scientific journals and told him that I did not believe I had breast cancer, but a condition referred to as "Diabetic Mastopathy". He shook his head and said that he hadn't heard of it.
My Fine Needle Aspiration results had come back showing loads of immune cells but no cancer. He said that this in combination with my age meant the chance that this was cancer was very very slim. However, he urged my to have the entire lump removed (excision biopsy) just in case. He was a nice fellow and I respected him, but I decided to go against his advice.
I'd had had it up to here with my diabetes by then. And the idea of a surgeon cutting into my breasts "just to make sure" was just too much for me to handle. I'd just gotten my confidence back after years of laser for severe retinopathy, and years of not wearing short skirts or showing my legs in public because I was embarrassed about the scars on my shins from my other rare diabetes-related condition – necrobiosis lipoidica diabeticorum.
I was very busy with life and work, just trying to keep my head together. Even the time all these appointments was taking up was driving me nuts. I talked to my GP about how I felt and she agreed that at my age and given the Fine Needle Aspiration results I was probably in the clear. I might have made a different decision if I'd had children or a partner who relied on me. But I was single, I was exhausted and, quite frankly, my breasts were one part of my body that I actually felt good about.
After all this, it took me more than five years to muster the courage to go back and get my breasts re-checked. It was less about the trauma and more the utter frustration of having to deal with medical professionals ignorant of my diabetic breast condition that was putting me off. That and the thought of having to go through the shitty inevitability of dodgy looking mammograms and ultrasounds.
So it was an absolute relief and a blessing to find myself at the Wesley Breast Centre in Brisbane, this time being cared for by women. Female doctors, radiographers, nurses, volunteers and lots of lovely women sitting around sipping cups of tea and looking out for each other.
I demanded to see a doctor before agreeing to any tests. I wanted to explain the Diabetic Mastopathy situation and to tell them not to panic. To my delight and relief the doctor said straight up, "no problem, we know all about Diabetic Mastopathy here". She also said that until I got a definitive diagnosis, I would have to put up with doctors doubting me. If a core biopsy (just a few strips of tissue taken out, but not the whole lump) came out looking like Diabetic Mastopathy, I would be in the clear and wouldn't have to get my breasts screened again until I was 40, just like other women. Sheer joy and jubilation!
Well, I did have the core biopsy. It wasn't much fun, and my mighty diabetic breasts even managed to bend a couple of their needles, but it wasn't too bad. The pain went away after a few days and there are no scars. I now have my diagnosis and the test results to prove it. Diabetic Mastopathy.
My breasts have changed over the last five years. The fibrous thickness has increased and still no one is able to tell me how this condition might affect my ability to breast-feed. (*see below)
I remain disturbed about the level of ignorance that still exists about this condition amongst GPs, diabetes specialists and even some breast specialists. And it makes me sad that I now meet women who have had their lumps removed. Sometimes more than one. By doctors unaware of the textbook advice, "treat conservatively". I even met one woman whose GP had advised her in ignorance to get her whole breast removed.
My advice to women with Type 1 diabetes who find a lump in their breast is this: Do get it checked out. But try to find a specialist breast clinic. If you are asked to have an excision biopsy, ask instead if you can have a core biopsy. Cross your fingers and if you are in the clear, rejoice in the fact that you not only don't have to get your breasts checked again until you're 40, but that you have lovely firm breasts! Hell, why not? For everything else we have to put up with, we might as well enjoy this sag-free consolation!
* Note: The Diabetic Mastopathy did not effect my ability to breastfeed. Since writing this article, I have given birth to two children. I breastfed my daughter until she was nineteen months old and I am still breastfeeding my son, who recently turned two.
Breastfeeding my children is something I have found to be a lovely thing but I did need extra support to get breastfeeding established due to my diabetes. My daughter was taken to special care for blood glucose monitoring for one and a half days after her birth and this separation, plus the fact that she was born at thirty six and a half weeks gestation, without a sucking reflex, meant that I needed to cup feed and express my breast milk for her while she learned how to nurse from the breast. I got help from a lactation consultant for her birth and for my son's I organised a breastfeeding-friendly paediatrician to care for him. For more information on my experiences with breastfeeding and pregnancy in general, see my blog, Up The Duff With Diabetes.
PS Since writing this article I have had my breasts checked again at the Wesley Breast Clinic. And now that I am forty they will be checked each year. I discovered that the lumps had actually shrunk a little. Nothing had changed apart from the breastfeeding, so perhaps the breastfeeding had actually resulted in a shrinkage of the lumps?
Also, I had been concerned that it might be really difficult as I aged for the breast specialist doctors to interpret my test results ie to spot cancer if it was to develop, due to the fact that Diabetic Mastopathy looks similar to cancer in ultrasounds and mammograms. When I asked the breast specialist about this at my appointment she said two things. 1. The diagnostic technology they now use is superior to what was available at my initial diagnosis and it is improving all the time. This allows them to see in more detail what is going on in the breast. 2. The specialist breast clinic I go to has a team of very experienced breast specialists who examine the ultrasounds and mammograms and together they are able to have a very high degree of accuracy
Wilmhurst, D., Facts About Diabetic Breast Disease All Women Should Know, Conquest, Diabetes Australia, Autumn, 2002.
Painless Lumpy Breasts Seen as Little-Known Diabetes Complication, News Release from the 57th Annual American Diabetes Association Meeting, Massachusetts, June 1997.
This article was first published in Yada Yada, the newsletter of Reality Check, which is now the Type 1 Diabetes Network.