It’s not cancer.
I say that with a kind of apologetic laugh, anytime it comes up that I’ve now had two tumors surgically removed in the past two years. Nope, it’s not cancer. But it is a pain in my butt – or more accurately, my boob.
It’s not cancer. I say that because sometimes I need to remind myself of that, of how grateful I am for the fact that I have benign breast condition, and that’s far from the worst hand I could have been dealt. I say that, and write this post entirely, because it’s the kind of thing I would have liked to read when I first learned what a fibroadenoma was – just one woman’s account of how she handled having them in her twenties (warning – this is going to be a long one. It’s the kind of detail I was looking for when I was first diagnosed). Or, more broadly, how any travel addict juggles an unpleasant diagnosis with an incurable case of wanderlust.
The First Cut
Back in November of 2012, while taping myself into a ridiculous bustier top (hey, it was Las Vegas!) I felt a lump in my left breast. The day I arrived back in Albany I had an appointment with my general practitioner for another issue but asked about it while I was there, fully expecting the doctor to roll her eyes at me. Instead, she sent me for an ultrasound. And then a mammogram. And then a core needle biopsy. All along, I was still waiting to be sent home with a headshake, but as they inserted that 6 inch needle into my chest to take a tissue sample, I was starting to get suspicious that maybe something actually was going on here after all.
The results of the biopsy came back. The lump was benign; something called a fibroadenoma – a solid breast tumor most common in young women. I was twenty three. I was told I’d have surgery, and it was not presented as optional. It was three weeks to the day after I’d found the lump – things moved fast. The problem was that I was leaving the country on Boxing Day for five months in Southeast Asia. The radiologist told me to have it taken care of immediately upon return.
I’m lucky. Both my parents are active in the healthcare industry in Upstate New York. They sent out their bat signals and within days we had the name of the best breast surgeon in the Capital Region. However, popular means exclusive. I returned back to the US from Southeast Asia in late May, just in time for my hard-won appointment with the dream surgeon. But they bumped me – twice. I was extremely frustrated as part of my reason for returning to the US was to have the surgery, and I was only back for six weeks. By the time I finally got into an exam room, it was already June. Too late. I left the country again. At this point I was having trouble getting to bed as I sleep on my stomach, but otherwise I was only marginally effected – I had to modify my yoga practice and couldn’t get massages (I KNOW RIGHT THE HORROR.) I cut out caffeine on the advice of my surgeon, who said it might ease my discomfort.
In September of 2013, ten months after discovering my tumor, I finally had a surgical lumpectomy. I was anxious about going under full anesthesia, but I felt comfortable with the hospital and surgical team, and in the end procedure was simple and the recovery wasn’t too painful. The worst part? Not eating or drinking all day before the surgery. I really like breakfast.
Blissfully oblivious in Las Vegas
After a few days, I took my bandages off and was shocked by the brutal bruising I found, but when the steristrips came off during my follow up a week later the incision looked better than I could have imagined. I struggled with the enforced down time, post-surgery. I had the Inca Trail coming up and I wanted to be out running and weight lifting and yoga-ing my way to peak fitness, but instead I was stuck on the couch. I left for Peru in early October and at that point more or less resumed normal activity. The incision site healed beautifully – you could barely tell I’d been operated on.
Looking back on the whole ordeal from South America, I reflected that the surgery hadn’t been nearly as bad as I’d imagined, and really the healing wasn’t awful either (heck, I was back answering emails the next morning) – mostly, as someone who thrives on exercise-induced endorphins, I was just effected by the two week ban on physical activity.
But frankly, as an on-the-go nomad, the worst part had been the scheduling of it all. It’s near impossible to get on the books with a good surgeon, and even harder when you’re trying to match up with a globetrotting schedule. It took nine appointments to handle that ping-pong sized tumor from that first discovery to my final post-surgical check up, with several re-schedulings and book bumpings along the way. Though I’d been warned more tumors might appear, I basically stuck my fingers in my ears and sang “la la la la!” This is a scientifically proven method for dealing with bad news that I regularly utilize and personally find very effective.
Taking those tumors on the road
Except when it isn’t.
In May of 2014, just seven months after my surgery, I went back to see my general practitioner for my first physical in seven years. “Have you felt this?” she asked me, while doing the breast exam. I sighed.
Another ultrasound later, I burst into tears when my radiologist told me I’d had to have surgery again as soon as possible. “It’s not cancer, you know,” she told me with a somewhat withering look.
Again, I had a scheduling problem – I had a crazy summer of domestic travel ahead followed by a five-month international trip kicking off in nine weeks. The radiologist was firm – I needed to have the surgery before leaving the country, or else she would help me find a surgeon in Bangkok. Her urgency frightened me, as did the prospect of trying to get in to see my surgeon again on such short notice. I was leaving in three days for a work trip to Nevada followed forty-eight hours later by a work trip to Maui, both of which I spent juggling calls between my radiologist and my surgeon’s scheduling nurse.
Things kind of came to a head there in Hawaii, when I got a speeding ticket while on the phone contemplating whether or not I needed to fly home early and just sobbed to the poor, deeply uncomfortable police officer that I didn’t want to have to be cut into again and I didn’t want to have cancer someday and I was running really late for an event that I had to show up and smile to a lot of people at. (Yeah, those are the parts of my job that don’t quite translate as well as color-drenched Instagrams from the beach.)
Living it up or lost in thought?
While waiting to see my surgeon, I saw my gynecologist, Dr. S, for a routine appointment. I was a wreck with stress at this point and he saw it written all over my face. When he inquired what was wrong, I told him everything, not even realizing that gynecologists are frequently involved in deciding a course of treatment for fibroedenomas. Already one of my favorite doctors, Dr. S quickly rose to the top of that list. He requested my charts, consulted with my other doctors, and took time to research and consult his colleagues. When he called me a few days after our appointment, he told me his official recommendation was not to operate. Surgery, he explained, was optional and in his opinion I had a lifetime of them ahead as he believed I would continue to develop tumors on a regular basis. To continue cutting, he warned, would lead to disfigurement and eventually, the need for reconstructive surgery. While I found it confusing and scary to have such wildly varying opinions, having a doctor that seemed to be proactively looking out for my best interest and truly invested in my well being was a life raft that I clung to.
Between my insane schedule and my surgeon’s summer holidays, I wasn’t able to get an appointment until ten days before my international departure. (And if you’re wondering why I didn’t go see another surgeon, it wasn’t really an option – I was told for liability reasons, surgeons will avoid operating on someone who’s been operated on by another surgeon within the past year.) I was extremely anxious leading up to the appointment. Depending on who she agreed with – my gynecologist or my radiologist, I was possibly going to have to have surgery a week before leaving the country or delay my trip entirely. None of my family were in Albany at the time, but thankfully at this point I’d learned that it was best for me to have an advocate along at my appointments, so I was extremely grateful when a family friend agreed to accompany me.
My surgeon took the middle stance. Yes, I needed surgery, she said, but it could wait until I was back from this five month trip. Any lumps over 2cm had to go, and this one, grown from undetectable in less than six months, was already over that threshold. When I mentioned the radiologists’ urgency she shrugged and reminded me that radiologists treat cancer patients all day – they are by nature overly cautious. She also balked at the suggestion that I’d need another mammogram, expressing annoyance that they had even performed the first one due to concerns over radiation. Again I felt frustrated at the number of opinions I was meant to juggle – and also the lack of answers. But I was relieved to put off my problem for a bit longer.
Back Under the Knife
After another round of scheduling drama and consulting with my parents to make sure I was confident in my decision, I found myself finally being wheeled into surgery ten days before Christmas 2014. I felt like an old hand at this point, and one of the surgical nurses remarked that she thought I’d been giving sedatives already based on how calm I was. The surgery went well, I was told, and there was much less bruising than the previous surgery, which I took to be a good sign.
On Christmas Eve, I went in for my one week follow up. Typically, they do them after day days, but I’d be en route to New Orleans by then. I wasn’t able to see my own surgeon, instead I saw one of her partners in the practice. When he removed the steristrips, I was horrified. There was an oozing infection along the incision site. While dressing the wound and writing me a prescription for antibiotics, the surgeon tried to soothe me by telling me I could always have corrective cosmetics surgery in the future if the scarring was bad, but we’d focus on the infection first. I spent most of Christmas Eve in tears – exhausted at the thought of more cutting, devastated at the idea of unsightly scarring and wondering if I’d made the right decision to have the surgery after all.
Literally cried the entire day
This time I felt the recovery was slower, which makes sense now that I know I was fighting off an infection. My body just seemed tired, which I’m sure wasn’t helped by the relentless gray winter and a bout of depression I was going through. I pushed back my flight to New Orleans a few days to see my actual surgeon for a second follow up — by the time I left the antibiotics were working better than expected and my surgeon was confident that the scarring would be manageable. Six weeks later I’m not thrilled with how the incision site looks – it has healed much worse than my original scar, and is in a much more prominent location. I know at some point I will come to peace with this new battle wound, but at the moment it’s still too raw – I know it’s dramatic, but right now look at myself and I feel mutilated.
Prevention And Other Treatments
There was one thing all my doctors seemed to agree upon – there was no behavior I could change to prevent further tumors from appearing. I presented a million theories I’d read online – was it my Diet Coke addiction? My Implanon birth control? Standing too close to the microwave? (Seriously how are you not supposed to watch that spinning sorcery – IT’S HYPNOTIZING.)
But according to them and to the independent research I have done, the main factor is just genetics – and both my mother and another female family member both had one fibroadenoma each in their twenties. Though studies are underway to see what effect taking birth control before the age of twenty, drinking in adolescence, and other environmental factors might have on fibroadenomas, right now there is no conclusive answer.
I did look into homeopathic prevention and treatment methods, but none looked very realistic – and all received eyerolls from my doctors. Yes, I’m sure many areas of my health would improve if I stopped consuming meat, alcohol, and sugar, but then what would the point of life be? (Actually only like half being sarcastic.) That said, I am attempting to eat greener and cleaner than ever for a multitude of reasons.
Mostly, when I tried to look into alternatives to surgery, I found , message boards full of desperate woman sick of being cut into annually, and a whole lot of nothing reassuring. I am concerned that continued surgeries will alter the shape of my breasts and lead to inevitable cosmetic surgery, which I will do almost anything to avoid. One treatment that I am planning to pursue should more tumors appear in the future is laser ablation – it appears to be less invasive and after my last surgical experience I just don’t know if I can put my body through all that again.
Obviously, having health insurance is essential. On my next birthday, I will officially roll off as a rider on my parent’s health insurance – time to get my big girl pants on. This summer, when I’m home in the US, my big project is going to be figuring out my insurance situation, since I certainly can’t fork over the approximately $20,000 this surgery costs out of pocket. The good news is that I feel incredibly comfortable with the health care in Bangkok and would be totally at ease having this same surgery or other treatments there if necessary, where the out of pocket costs would be much more manageable. As a self employed freelancer, I fear my options are limited – many friends in my line of work have chosen to go forgo insurance, but in my position I don’t believe that’s an option I can afford.
If you found this post while looking for information about your own fibroadenomas, I hope I’ve at the very least given you the small comfort that you aren’t alone (and at the worst, like, completely terrified you.) I do have a few small sanity savers to recommend:
- Get multiple opinions. Despite how overwhelming it was hearing them all, it was better than simply going along with the first alarmist report I received. Find a doctor you deeply trust and who truly cares about your well-being.
- Have an advocate. Apart from my gynecologist Dr. S, I always feel that I am being rushed out of medical appointments before I have time to process the information I’m given and formulate any questions I might have. Having someone else there to speak up for me and to remind me what my thoughts and concerns were going in has been helpful.
- If your schedule is as hectic as mine, accept early on that you might have to be more flexible than you think. Prioritize your health — I did not always follow my own advice on this in the beginning. Booking domestic flights almost exclusively on Southwest meant that I didn’t worry about financial implications when I changed a flight to make an appointment – that was a lifesaver.
- Remember that these are benign tumors. Find comfort in that. But this isn’t the diseaselympics — don’t let anyone use that to tell you that you can’t cry.
Not slowing down
Today I’m tumor free, but filled with questions. Will more show up – or, more realistically, when? How should I treat them? What am I going to do when I roll off my parents’ health insurance next year? Is cancer in my future? (According to cancer.org, “women with fibroadenomas have an increased risk of breast cancer – about 1½ to 2 times the risk of women with no breast changes.”)
In the end, fibros themselves aren’t that bad! What’s kept me up at night hasn’t been the diagnosis or the surgeries – it’s been the doctor and insurance dramas.
Having three medical professionals with three sometimes extremely opposing opinions reminded me that doctors are not gods – they are just people with opinions, however well informed they might be, and there is no right answer. I actually found this incredibly frustrating – I’ve always been the type to simply go along with whatever the professional recommends, from a haircut to an antihistamine. Realizing that I am going to have to be ultimately responsible for the decisions made about my body is, to me, overwhelming rather than empowering. I feel like I am clueless and I want – need, rather – there to be someone who knows more than me who can tell me exactly what to do to make everything okay.
I know that’s not a very optimistic note to end on, but hey, sometimes life is messy. I have a lot to be grateful for. Sometimes I focus on that. Sometimes I throw myself little pity parties complete with ice cream sandwiches and tiny party hats. Sometimes I feel like a badass bitch for getting through it and taking these tumors all over the world and not letting them slow me down in the process. Sometimes I look at my scar-covered breasts and I cry. Most times, I don’t think about it at all.
And sometimes, every once in a while, I remind myself that it’s not cancer, after all.
. . . . .
Obligatory disclaimer here that despite watching several seasons of Grey’s Anatomy, I am not in fact a doctor, and everything in this post is simply my personal experience and my understanding of the information that my doctors have told me and that my research has led me to believe is true.