Diabetes isn’t just insulin, test strips and emergency orange juice. There are some downright awful things that can come with it, some disgusting, some embarrassing, some sad, some conveniently qualify as all three, and many of them not easy to talk about, let alone post on the internet. Anymore, I kind of have to laugh at how ridiculous it is that the only complications I learned about as a kid were retinopathy, nephropathy and neuropathy. Those are truly terrible conditions, all of which I’ve had at least an unsavory taste (thankfully not much more), but there seem to be an endless list of other complications, ones that don’t disable or kill you, but ones that can significantly affect quality of life, ones that no one tells us about until we’re standing in a doctor’s office wearing a paper gown trying to get a diagnosis for some seemingly unrelated problem. Every time I’ve been in that position, I’m always left feeling a little blindsided, thinking, why the hell is this the first time I’m hearing about this?
Back in July 2000, I found a lump in my right breast. I almost never did self exams the way we’re told we should. I come from some mutantly freakish healthy long-living gene pool, and no one in my family has had cancer. Of course, no has diabetes either. One day, I just felt a lump. I didn’t do anything about it, and I can’t even think of what my logic was about that. Maybe I thought it was my imagination, or I thought it had always been there and I’d never noticed it, or I thought it would just go away on its own.
A couple of months went by when I realized it had grown, so I decided I had better call the doctor. I vaguely recall seeing my OB/GYN first, and ultimately I saw a surgeon, but I can’t remember if there was another doctor in between. Regardless, I had my first mammogram. That experience and the machine were pretty scary. It also seems kind of pointless for those of us who don’t have enough upfront to hide a pump because they could barely get enough tissue between those plates to even look at. In addition to the mammogram, I also had an ultrasound, but neither procedure provided definitive results.
During the couple of months all of this was happening, I was starting to get a little freaked out. At the time, I was working in a hospital on the psychiatric unit and was friendly with many of my coworkers. I was getting all kinds of support which was great, but it came with a fair amount of advice, and all of it was kind of overwhelming. I was told to stop using artificial sweetener (ya, right…) and caffeine. People told me about their experience or the experiences of people they knew with fibroids and cysts. One of my coworkers, a nurse who has since died of liver cancer, had beaten breast cancer, so she very kindly pulled me aside to offer her support.
As I said, ultimately I landed in a surgeon’s office. He did a needle biopsy which turned out to be useless because they got so few cells. That meant whatever had taken residence in my boob wasn’t filled with fluid, but that only ruled out some possibilities. The doctor was clearly concerned about the results of the various tests, mostly because they hadn’t given any kind of conclusive results. The most telling procedure he had was what I had been doing from the start, palpating it, and it was growing exponentially. Back in July, it was a pea, but six months later it had blossomed into a kiwi. It was time for a lumpectomy.
It was surgery. I was unconscious. The doctor probably chatted with me after the fact, but I don’t remember now. The lab results would be back in about a week so my follow-up appointment was scheduled. In the meantime, I was groggy and sore, so I went home to rest for a few days.
The follow-up appointment finally arrived after an anxiety-filled week. It was benign, so that was a relief. The doctor said that to palpate it, it seemed to be a discrete mass, but during the surgery he found it had diffuse edges so he had removed it as much as possible, trying to leave as much breast tissue as he could since there wasn’t much to begin with. Then he told me that after he got the official diagnosis back from the lab, he had poured over textbooks to find anything about what I had because he had never seen it before, and he’d been a surgeon for upward of twenty years. I had sclerosing lymphocytic lobulitis, more commonly called, diabetic mastopathy.
Shit, was there any part of my body that this disease would just leave alone? To quote fellow blogger, Kelly, W. T. F.? There wasn’t anything to be done about the condition, but watch it. He gave me a copy he had made from a textbook of a description that was all of two paragraphs to take with me. I googled it when I got home, and I think I got maybe three results back in early 2001. I just googled for the sake of comparison, and I got eleven pages of results, so there’s some decent info out there now. The internet is a fabulous thing: a basic description and a medical journal article.
Maybe three months later, I felt a mass in my other breast. I skipped all the formalities I had gone through before. The doctor figured it was the same thing, but because it seemed like cancer otherwise, the only way to be sure was to do a lumpectomy. The results were identical.
The condition went on to take over the remaining breast tissue in both breasts. Pardon me for getting a little personal and possibly graphic, but my breasts look normal, other than the scars from the surgery, although those are barely noticeable anymore. The outer layer of fatty tissue keeps them looking normal, but the actual breast tissue underneath is hard so my breasts don’t feel normal. I lost some volume when the tissue was removed which is admittedly very disappointing since I didn’t have a lot even before the surgeries. Regular self-exams are pointless because both of my breasts are hard lumps – I’d never be able to differentiate something unusual growing in there. Mammograms are pointless because the tissue is so dense that the imaging technology isn’t effective. I’ve seen that MRI’s are a more effective imaging approach to detecting abnormal growths, but shockingly enough, insurance companies don’t want to pay for that, especially in anyone without a strong family history of breast cancer.
Diabetic mastopathy is associated with long-standing type 1 diabetes. It’s primarily seen in women, but there are rare cases in men, and also rare cases in type 2 diabetics. It’s associated with a history of poor glycemic control (guilty), and microvascular complications (this was two years after my vitrectomy). It hasn’t caused me pain, but there can be discomfort with it. The primary concern is that were I ever to develop breast cancer, I’d never know – not for a long while anyway. Besides that, it bruised my self-image and self-esteem and caused a lot of anxiety back when I was single and dating, but what’s one more permanent, incurable medical condition, right? At least this one is relatively harmless, and I pretty much asked for it by not taking care of my ‘betes. One more reason to stay on top of those BG’s.
*Image from Diabetes Care