Ask almost any cancer survivor about whether they have become a bit of a hypochondriac, and the answer is usually a resounding yes. I have a confession to make. I swing from extreme hypochondria to total denial of any symptoms I may have. When you have a disease that can travel to your lungs, bones, liver, and brain (and sometimes skin, pancreas, ovaries, and uterus, particularly if you have a BRCA mutation), that pretty much covers most of the human body.
Most of us didn’t start off as hypochondriacs. It almost seems to be a standard side effect of the disease. It doesn’t help to be living in a time where medical symptoms and their potential causes are a mere Google search away.
We are not stupid people. We know that we can get non-cancer related illnesses like the flu, arthritis, and broken bones due to trauma. But still the aches and pains of everyday living take on a new urgency when they could be the early signs of bone or liver or brain metastisies, particularly if we don’t recall doing anything that would have brought the pain on in the first place.
Reading metastic disease questions and answers can really put a scare into you. Someone will invariably ask, “how did you know you had bone or brain or lung Mets?” and the answer is often a vague recollection of pain in a hip or frequent headaches or breathlessness. And it is so easy to think I have pain in my hip or bad headaches or trouble catching my breath when I climb up a flight of stairs. That realization combined with a short visit to Dr. Google can be enough to convince you for an hour or a night or a week that you too have metastatic cancer.
It really doesn’t matter if the medical literature says that rarely do bone Mets strike below the knee or elbow. Google cancer of the hand or foot and you are bound to find a case study or 2 of some poor person who had this rare metastasis strike them. If they can get it, why not you?
Much of this crazy making hypochondria strikes once treatment has ended and you aren’t due to see your oncologist for another 4 months. You don’t know if you are overreacting or if in fact you are experiencing early signs of metastisis. Many cancer agencies have a nurse on call who can help evaluate your symptoms over the phone. Your family doctor can also be a source of comfort in checking out more common reasons for your symptoms. As they taught us in law school, if you hear hoof beats outside your window, think horses, not zebras.
Some of the rules of thumb I have learned from my medical sources is to wait a few days and see, for example, if the body aches were early signs of a cold or flu or muscle strain from an activity you may have forgotten. Keep a record of your pain – the type, duration, whether it is worse at night, and if over the counter medicines relieve it. If it is getting worse or is keeping you up at night, by all means get it checked out. It may still be non-cancer related but it needs to be checked out if only for your peace of mind. And sometimes it really is a herd of zebras rushing by your window so better to be safe than sorry.
A lot of the hypochondria does disappear with time, once you have experienced symptoms that can be explained as coming from non-cancer sources. If you have had a cancer recurrence or new primary, the hypochondria will return with a vengeance. If your body can get cancer again after surgery, chemo, and/or radiation, why couldn’t that cancer have spread before the recurrence was detected?
There are no easy answers. Sometimes a recurrence has already spread to distant body parts. These should be picked up by various scans or MRI’s. Other times, your bodily pains are mere coincidence or are actually brought on by the stress of a new cancer diagnosis. For example, pounding headaches, nausea, and an upset stomach can be an an emotional reaction to the stress of a recurrence being diagnosed and not a symptom that the cancer has spread elsewhere in the body.
I can give a few examples from my own life to illustrate how this has affected me. When I was first treated for cancer, every piece of scar tissue seemed like a new lump. There were a few trips back to the surgeon to be checked out, more mammograms, and even a biopsy just to be sure. After hearing the message scar tissue over and over again, I eventually calmed down and stopped looking for symptoms. Shortly before my 5 year “cure” check-up, I stepped funny off a curb and broke my ankle. I chalked it up to bad luck and went to my 5 year mammogram in a cast and on crutches. When they found a new breast tumor, I was suddenly convinced that cancer had spread to my ankle bone. No matter how many people looked at the x-ray of my ankle, I was convinced I had metastic cancer of the ankle. Finally a bone scan and ct scan ruled out any metastisis to the bone and eventually, I believed the doctors.
Something similar happened after my last cancer when I tripped on the bottom step and somehow broke my foot. It had seemed like a nothing accident and again it took a whole team of doctors to convince me this was just a freak twisting accident and not evidence of bone cancer of the foot.
Finally, I had a week of burning pains in my scalp followed by what looked like hives on one side of my face. It wasn’t scalp or skin cancer. It was shingles. Painful awful shingles on half of my scalp and face but nothing that was cancer related.
Over the 27 years of fighting cancer, I have self-diagnosed myself with a brain tumor, lung Mets, hand cancer, and a few other medical oddities. Every time I am proved wrong, I become more reluctant to have my symptoms checked out for fear of being seen as the complete neurotic I truly can be.
Some of us find it hard to draw the line between thinking the worst of every bodily pain and knowing when it is time to seriously check things out. My inner compass doesn’t function very well anymore after so many false alarms. I have swung to the other side of the pendulum, not getting things checked out in a timely manner. I ignored the raging cough that lasted for 6 weeks and left me exhausted only to find I had raging bronchitis that could have been treated weeks earlier. I am now so paranoid about being seen as a hypochondriac that I let things drag on for way too long, creating both mental and physical pain that could have been treated more promptly.
Have you found a balance between hypochondria and getting attention for legitimate health complaints? If you have any suggestions as to how to strike the proper balance, I’d love to hear from you in the comments below. If this is something you still struggle with, I’d love to hear from you too.
Sharon Greene January 28, 2015
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