Last June, I found some lumps where I never had before. A little Googling revealed that they were probably lymph nodes–enlarged lymph nodes. More Googling informed me that infections often cause lymph node enlargement. But I had no known infections. My doctor put me on antibiotics just in case. They had no effect on the lumps. Why else do lymph nodes swell? Cancer, cancer, and more cancer. So, she sent me to a surgeon to see if he thought I should have one biopsied. He said no, they were really nothing to worry about.
I went home and read tales on internet forums about people with enlarged lymph nodes who were young and/or otherwise healthy who were told there was nothing to worry about, only to learn months later that they had lymphoma and their prognoses weren’t good because their cancers hadn’t been caught early enough.
I was determined that this would not happen to me. My boys would not lose me before they could even remember me, not if I could help it. And thus began three months of careening between doctors’ offices, submitting to countless tests, and enduring a marathon of caregiver condescension and dismissiveness as I hemmorhaged money “advocating for myself.”
There were at least a dozen blood draws, a colonoscopy, abdominal ultrasounds and a CAT scan, and a head and neck MRI, and I eventually demanded to have one of the enlarged lymph nodes biopsied. The pathology came back benign reactive, but containing tattoo pigment. I have plenty of tattoos but my only tattoo near this lymph node was ten years old at least, so I was confounded by this result. More Googling revealed that melanoma cells can look like tattoo pigment in lymph node tissue.
A few weeks before the biopsy, I discovered a weird mole, had it removed, found out it was melanoma in situ, had a wide excision and was supposedly cured. In a follow-up visit with my dermatologist, I mentioned the lymph node and its tattoo ink to her because I thought she might find it interesting. I didn’t think my melanoma and the lymph nodes were connected because she told me in situ melanoma, by definition, has not yet migrated anywhere. (Google confirmed this.) She seemed distressed though, and paged through my chart for a long time before finally telling me I needed to see a melanoma surgeon at a local university hospital to make sure he didn’t want to do a sentinel node biopsy. I was stunned.
Weeks later, I burst into tears upon entering his office in the COMPREHENSIVE CANCER CENTER wing of the hospital. It was all I could do to keep the forms I had to fill out dry. The melanoma surgeon decreed that my skin cancer was not the cause of my lymph node swelling, but that he could see why I had worried (this was the one thing I hadn’t been worried about, mind you). “You had your bell rung,” he said. I had my bell rung? What, like, my death bell?
Meanwhile, even more Googling uncovered a study which found that women who’ve used fertility drugs (I had to use them for both of my pregnancies) are more likely to develop two kinds of cancers as a result: melanoma (check!) and non-hodgkins lymphoma (#%@#!).
So what did I do? I panicked anew.
There was more to it but the whole summer is a blur for me now, both because I saw so much of it through tears but also because it’s hard to lay down memories when your heart is slamming around all the time and your brain keeps tripping the imminent death alarm, falsely it turns out, and your family is as exhausted by you as the doctors, and Google becomes a harder habit to quit than any you’ve quit before (and there have been many other far uglier ones).
I still don’t have definitive explanations for what all went wrong in my body and my mind this year. I still have the enlarged lymph nodes in their original inguinal location (which I now attribute to my body’s delayed macrophagic attack on an offending “tramp stamp”) and now in my neck too. Yes, I have an anxiety problem, and probably IBS and TMJ as a result (the latter of which may explain the neck lymph nodes that plumped up in August). No, I will not be getting any more tattoos.
All of this is to say I apologize for my long blog absence and for this paltry excuse of a 5-month recap. I’ll probably write more here about my anxious summer later. It’s just that I’ve got other topics pressing now, finally, and I don’t want to get mired again in the mess I just crawled out of. In other words, cue Dolly:
I’m so glad you are healthy and back at writing! I really enjoy your writing so I was super excited when you popped up on my reader this morning! Bravo for being your own advocate; even if it lead you down a rabbit whoe that is google. So glad to see you writing again!
Thanks, Andee! And rabbit hole is right. What a long strange trip.
The healthcare industry is so complex and intimidating. I’m so glad you advocated for yourself even if it was at the expense of your wallet. What a frightening experience. Sending love and hugs your way. xoxo
Thanks, Jenni. It was scary and I often felt very isolated and dismissed. It makes me sad to think of all the ill people fighting the healthcare industrial complex on a daily basis with no end in sight.
Welcome back, Aly! I’ve been hoping you would come back to writing your blog! I’m sorry to hear about your frightening summer, but glad to hear you are doing okay now.
Thank you! I’m glad to be back.
Now all I can hear in my head is, “Riiiing my beeeellll, bell, bell, ring my bell!” Donna Summers, right? (Sometimes a word is as strong as any pill.)
Hey Aly! Just catching up with your blog now. So sorry for all you’ve been through this summer. In October, I had eye surgery gone bad, which convinced me that I was either going to a) go blind or b) die. For those of us with anxiety issues at baseline, it doesn’t take much to jump to scary conclusions, much less a medical scare. The stress and uncertainty of the whole experience really gave me a new perspective for how my patients and other chronically ill people must feel. I was so depressed and wanted to just sleep all of the time. It was all-consuming. I felt like a bad mom, wife, daughter. I really feel like my daughter picked up on something being wrong, as I’m sure your kids did, too.
I had a patient recently recovering from a lymph dissection of her neck who had melanoma from her lip that spread to her neck lymph nodes. It definitely happens, and you are right to be proactive.
Ever since a 2 year stint in Puerto Rico for work which gave him melanoma, Jim goes to the dermatologist every few months to have moles cut off. And has to wear a shirt at the beach, with sunscreen underneath!
Love you!
Julie–I’m so sorry you went through that! Emailing you now. xo, a
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I have had a superficial spreading melanoma removed from my chest 2 months ago. went back for a wider excission then had pet scans mammogram and ultrasound due to swollen lymph nodes in the axillary area my oncologist found. I had them removed last week and the surgeon said they were matted and pigmented. Path report now says it was just tattoo ink. My tattoo isn’t anyhwre near were the melanoma was and I have never had a swollen lymph node until this melanoma problem. I don’t feel comfortable with the path report and was wondering what your thoughts were on this. I’m afraid it isn’t really tattoo ink but instead melanoma. By the way the melanoma was a stage 2. Thanks
First of all, I’m so sorry you’re going through this. Secondly, the lymph system is complicated. The underarm nodes can drain that entire arm, plus your upper chest and back on that side. They can even drain your neck and head. Is your tattoo on that arm or general body quadrant of the enlarged nodes? I had my node sent to another pathologist for a second opinion, who also ruled it benign. You have every right to do this and should if you still feel concerned. I would feel some reassurance though if your PET scan was clean. Also, how enlarged are your nodes? Did you find them or were they only found because a doctor examined them because of the melanoma? If the latter is true, it may be that they’ve been enlarged for some time without you knowing it and that’s just their normal (perhaps post-tattoo) state. Sometimes nodes enlarge due to infection and never go back to their original size. Anyway, I’m not a doctor of course but I have googled extensively on these subjects. I hope something I’ve said here helps. All the best. Aly
The largest node was 3.6cm and the others she removed were matted. My tattoo is on that arm but is probably the same size as the lymph node was. I had an ultrasound two years ago of that side and it showed no swollen nodes at that time. That’s what bothers me. My tattoo has been there 20 years.
I can definitely understand why this bothers you. I did come across several stories online of people whose old tattoos caused delayed lymph node reactions. My tattoo was 10 years old when this happened to me. I’d still get that second opinion on the node pathology for peace of mind. If you have insurance, it may cover it (mine did). I also got a second opinion on the pathology of my malignant tissue from the mole site. You truly are your best advocate. And doctors are working for you. You’re the boss. If you’re not satisfied with their answers, keep drilling them or fire them and find new doctors.