The Big C

Dermatomyositis and cancer often go hand-in-hand and we don't really know why...4 min


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The Big C by Lizzy Finn

Cancer is what we are all afraid of, isn’t it? All the TV shows we watch, the movies we see, the dramatic health story is normally a cancer diagnosis. We’ve all seen the image of the woman stoically losing her hair or the once-strong man doubled over the toilet throwing-up after chemotherapy. In Australia, one in three of us, regardless of other health conditions, will be affected by cancer, and it is a big, scary disease. So, it’s understandable that we are scared that it will happen to us or, to someone we love.

I’ve dealt with cancer in my family. My mother was diagnosed with metastatic lung cancer in 2015. She died shortly after. We nursed her through chemotherapy and radiotherapy. She ended up being admitted to a hospice and dying in her sleep in peace. It was a mercy.

Luckily, I have never been diagnosed with cancer but since my diagnosis of dermatomyositis (DM) in 2019, cancer is something that I’ve had to come to terms with.

Dermatomyositis and cancer often go hand-in-hand and we don’t really know why. Often, dermatomyositis is triggered by cancer somewhere in the body (cancer-associated myositis, or CAM). The theory is that the cancer triggers an autoimmune reaction in the body. There are also antibodies in dermatomyositis that are associated with a greater risk of cancer. I have one of these antibodies – NXP 2. Again, for some reason, people with this antibody are more likely to have cancer-associated myositis, and are more at risk of developing cancer after their diagnosis of myositis. Furthermore, people with dermatomyositis, regardless of their antibodies, seem to be more likely to develop cancer. Again, we don’t really know why. Finally, the medications used to treat dermatomyositis (DMARDs, chemotherapy, steroid therapy) all put your body at a greater risk of some cancers. The risks all add up. You are at highest risk for the first 3-5 years post diagnosis, but it is a life-long concern.

When I got diagnosed, not only did I have to come to terms with the fact that my body, and my life, had changed irreversibly, I had to reconcile the fact that my body, in all likelihood, would be more likely to contract a cancer at some point. I might be lucky, and avoid it altogether – I could do with some luck! But, regardless, cancer was going to be something that I had to watch for and get used to the idea of for now.

Part of the ongoing management of my disease is an annual PET/CT scan. I get mine in June. I think, for the next few years at least, June will be my cancer month.

Last June was my first experience of the worry and waiting associated with a potential cancer diagnosis. I had a PET/CT scan, CT scan with contrast, MRI, chest x-ray, and full blood count. After my first PET/CT scan, I came home and comfort-ate the biggest plate of pancakes I could find, and then furiously searched ‘occult malignancy’ (this was the type of cancer they were particularly looking for at this point, as it is a known trigger of DM). Everything I read was pretty scary. I read-up on the NXP-2 antibody, and that was scary. I read about CAM, and that was scary. Basically, I was really scared. I was already ill, and I was worried about what would happen to me if I got even sicker. Luckily, aside from an enlarged lymph node, my scans were all clear.

Myositis patients, ask family and friends to donate plasma

Fast forward to June this year. My cancer month. I go for my annual PET/CT. I’m pretty confident that things will be fine. My DM is under control, and aside from fatigue, I don’t have any worrying symptoms that can’t be attributed to either my medication or my DM. But, this time, the results come back abnormal. Sh*t.

This time my results come back with what they call “increased FDG uptake” in my cervix and in my throat. My specialist recommends I see an ENT and a gynecological oncologist. I ask her if I should be worried, and she says that we are just being cautious.

Even though I knew that I wasn’t symptomatic, and even though my specialist reassured me that we were just being cautious, when you hear “oncologist”, you worry. I resorted to Dr. Google again and I think I have now read every journal article on “FDG-uptake”. I can tell you the typical SUVmax threshold for many types of cancer, and I know that inflammation and infection are the most common false-positives. I know all about measuring lymph nodes and physiological reactions. None of this eased my mind. It didn’t do much to ease my partner’s mind who, I think, was more worried than I was. I at least had been through all of this the year prior. This is his first ride on the maybe-cancer rodeo and it is certainly disorienting.

I had my first oncology appointment today and let me say, my flat has never been cleaner. I spent all day yesterday cleaning any and all flat surfaces in my flat, and it was definitely a good way to keep my mind off things. Luckily, after a brief and painless exam, we were able to confirm that the abnormal result was almost 100% likely to be caused by an infection. We’ve taken some swabs and such to test for some things just in case, and I’ve been given something to treat the infection, but it was all good news. Huzzah! Needless to say, we were both incredibly relieved.

Now we wait for the second oncology appointment at the end of the month, but the abnormal result there is again very likely to be a recurrent infection so we aren’t too worried.

So, what can you do if you are faced with a similar situation? Here are my top five tips:

  1. Don’t resort to Dr. Google. You will always find bad news or worrying “evidence” to back up your fears. Resist! Read a cheesy book instead or watch something trashy on Netflix.
  2. Try and rest and get some sleep. Take a sleeping pill if need be, if you really can’t sleep. Not sleeping is going to make you more stressed, and more anxious.
  3. Do things that calm you down. For me, cleaning the flat really helped! Be nice to yourself while you are waiting for test results or to see specialists – you need a bit of extra reassurance right now and if that comes in the shape of a chocolate bar, so be it. Diet later.
  4. Talk to friends and family. It is ok to be worried – don’t bottle up those feelings. We can feel foolish once the test results come back all clear, but your worry during that period of uncertainty is valid and your friends and family are there to support you.
  5. Celebrate all the good results while they are good! It may seem silly, but even going for a slice of cake or a nice coffee can help bring some closure to the period of worrying and waiting. Celebrate the wins while you have them.

Photo by National Cancer Institute on Unsplash


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Lizzy Finn

I am a consultant on a career break, fighting a recent diagnosis of dermatomyositis. Sharing my experiences, and trying to get through the day with lots of decaf tea!

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