I was asked on Knitters with Breast Cancer to detail the issues I've dealt with since my mastectomy, and as I prepared to head over here and write this entry, I stopped by Facebook. Kathi of The Accidental Amazon had shared the above picture, with a link to Feisty Blue Gecko's Unbelievable, a post about, as Kathi says, "The latest in tacky, ill-conceived, wrong-headed marketing exploitation." To paraphrase Feistyblue, many of us cannot go braless OR wave our arms in the air like that, so way to rub it in our faces, marketing people! In fact, I just returned home a couple hours ago from having an injection in my left shoulder for yet another impingement (I went through it with my right shoulder last year). No way I'm even gonna try that pose.
As always, Kathi writes beautifully about many of the issues mastectomy patients deal with: Arm and Shoulder Pain After Breast Cancer. I've had many of those myself.
So, without further ado, my list of crap I've dealt with since I had surgery to remove both my breasts on February 8, 2012. They aren't in chronological order, but I'll try to delineate which have improved/resolved, and which are ongoing, as well as what treatment I had for each. Also, remember that not everyone experiences all, or even part, of what I have - I tend to be a "worst case" in part due to other health issues. But the things I'm dealing with are NOT uncommon!!!
Keep in mind that I was never told about a single one of these before my surgery. Not even a hint.
- Axillary Web Cording/Syndrome - extensive physical therapy for nearly 4 months. The cording isn't gone, but is substantially better. I rarely get electric "zings" down my arm these days.
- Shoulder Impingement Syndrome in my right shoulder - again, PT, which was concurrent with the therapy for cording. It's considerably better, but not gone; as I stated above I've just gone through diagnostics for my left shoulder including an MRI and an injection (which I also had in my right shoulder last year). PT will follow soon. Again.
- Post-mastectomy Pain Syndrome (PMPS) - improved, but not resolved. My symptoms include phantom pain and itching (I say phantom, because I have little to no sensation in the areas that hurt and/or itch), and the above issues. Acupuncture helped tremendously, but I still have it on and off. And when it's on, IT'S ON. If you've ever had an itch that won't go away, multiply that by a thousand and then stick it in a place you cannot feel. It will seriously drive you crazy, and doctors DO NOT discuss it.
- Hypersensitivity in my chest and below the bra line where numbness transitions to so-called "normal" sensations.
- Numbness in the reconstructed area (what you might call "breasts" or "foobs"). That was the ONLY thing I was told about before surgery. And while I was told, absolutely nothing prepared me for its reality or the psychological effects of losing a major erogenous zone. I also have numbness around my bellybutton from the reconstruction, since after the TRAM/DIEP they (sorry to be graphic) basically hauled all that skin up and moved my bellybutton. I have the same hypersensitivity on the borders of that area as I do in my chest. I never know when something's going to touch me in the wrong place and trigger the hypersensitivity, the pain, or the itch. It could be a hug, a touch, or even the fabric of my clothes.
- Pain in my lower abdomen from that part of the surgery. That's resolved now; it took time but no therapy was needed.
- Lymphedema. Oh, lymphedema! Many people know about the compression sleeves that help with axillary lymphedema from mastectomies; I wear one on my right arm. I occasionally need a gauntlet for that hand when I'm really puffy (I call my lymphedema "puffer fish" - because it changes like one, with the pain being the fish's spines). But most people don't know about truncal lymphedema, which I also have. I have it in my right upper chest, my "foobs," my torso, and the left side of my lower abdomen. I'm having custom compression garments made that will amount to a pair of bike shorts and a tank top, but don't think they're glamorous - they are really ugly, and the top had to be redone because the first one showed under pretty much every shirt I own except high-necked t-shirts, which I don't care for, and wearing clothes I like is a major thing I don't want to give up, nor should I have to! Until they're ready I wear a full Spanx, and yes, that makes going to the bathroom a challenge. But I cannot go braless without pain, and regular bras aggravate the lymphedema just below my bra line something awful. I own a long-line mastectomy bra that I wear sometimes, but those were not developed with comfort in mind! I sleep in an Under Armour compression t-shirt that holds a Pitpak in place in my right axilla to keep the swelling down overnight. I am so very sexy these days, with the lymphedema garments, all the scars, and knowing that touches can trigger extreme discomfort and pain at any time. I had a month of daily PT and have at-home exercises and MLD now, which admittedly I am not doing daily, but more on an as-needed basis.
Told you I'd be back if I thought of more:
- Sternal pain. For the first year or so, my sternum ached almost constantly. Like a dull toothache pain that never completely went away. It took time and is finally better, although occasionally it returns for a day or so.
- Lower/mid-back pain from the TRAM/DIEP: it took me two weeks to stand fully upright. I was amazed when I first woke up from surgery how badly my back hurt; that was the absolute worst part of the early days for me. I would just cry from how horrible that pain was. While it did eventually improve on its own, I wish I'd been warned how awful it would be.
- The feeling I'm wearing a tight harness around my chest. I'm told this is almost universal to those who've had mastectomies; my plastic surgeon said that they can't really study whether it improves or whether we just get used to it. I get it now when I go braless, which is why I can't, because why would I willingly subject myself to that pain?
Some of these things can happen after lumpectomy and radiation, but I can only speak from my own experience with a simple (vs. radical - there's nothing simple about all this), skin-sparing double mastectomy. Also, I haven't really touched on the psychological crap, though I should write that post soon.