Life After Cancer: You are NED, Now What?
Ongoing treatment after a cancer diagnosis is a roller coaster of emotions, but nothing prepares you for the high that comes with the news that you are N.E.D. (no evidence of disease). And of course you naively assume that must mean you can jump off this rollercoaster ride and seamlessly slip back into your old life. Not so fast…. After speaking with many cancer survivors there are consistent themes that show up in the post NED part of the journey…. Its like the gift that keeps on giving! Here is one survivor’s perspective.
“We found no evidence of disease!” Happiness, uncertainty, excitement, hope, and fear all rushed through me as I heard the news that all signs of thyroid cancer were gone.
There were so many questions racing through my mind—the primary one being: Was I cured?
But I quickly came to realize, doctors are very cautious around the ‘C’ word. Because using the word “cured” would suggest that there are no traces of cancer whatsoever and that it will never come back. Because cured would mean a guaranteed cancer-free life—and as we all know, there are no guarantees when it comes to cancer.
Instead, they’ll say things like No Evidence of Disease (NED), or complete remission, or that there are no physical signs of the cancer-causing cells. As much as you want to put the whole thing behind you and forget about anything and everything cancer, you quickly realize that life won’t be the same. Things don’t go back to “normal” and life doesn’t return to how it was before diagnosis day just because you’ve been declared NED.
The constant fear that the tumor may return, along with the lingering physical and emotional side effects continue to impact your day-to-day routine.
After undergoing several rounds of biopsies, surgeries, radioactive iodine treatment and a thyroidectomy, here’s a glimpse into what life looks like after being declared NED.
Continued Health Problems
Even though your cancer has gone away, there are many delayed side effects that continue to emerge even years after the treatment has ended. Chemotherapy and radiation therapy are both known to affect bone mineral density and issues, such as osteoporosis, dental problems, and joint disorders. There’s also the risk of nerve damage that can take away your sense of hearing, taste, and smell.
For instance, a common side effect of radioactive iodine treatment is damage to the salivary glands. Radiation from the treatment can damage these glands, which results in less saliva, swelling, and dry mouth. From time to time, there may be a slight burning sensation around the cheeks caused by the inflammation of salivary glands.
You often have to take medications and vitamins to alleviate pain and manage these symptoms. These issues can decrease your quality of life and make it difficult to carry out routine activities.
In my case, a thyroidectomy was also involved that came with a lifelong dependence on thyroid medication. For those of you who don’t know, a thyroidectomy is a surgery where your thyroid gland is removed. This gland plays a major role in regulating your metabolism. So, functions such as heart rate, digestion, bone maintenance, and muscle development all rely on a healthy amount of thyroid hormone in your system.
If I forget to take my pills in the morning, the effects often creep as the day progresses. I get tired and worn out pretty quickly and have difficulty concentrating on my work. Sometimes, I’ll feel the muscles in my legs and arms cramping up, which makes it painful to do any physical activity.
Despite being declared NED, cancer survivors still get anxiety as bi-annual scan comes along. You know the drill. Wait in the radiology department’s waiting room for some time before being led into a small room. It helps to purposefully wear accessible clothing so you don’t have to change into the hospital gown. The ultrasound technician starts applying the ultrasound gel and asks you questions about your diagnosis and what you’re there for.
The clicks and beeps are all familiar, but what if things change this time around? I know the drill yet I’m still dreading the what if. What if this time there’s no ‘everything looks good here’ affirmation? What if the photos reveal suspicious lymph nodes that require more follow-up? There are so many questions and what-ifs swarming through my head, and once again, I feel like I’ve been transported back in time to when I first learnt about my diagnosis.
The feeling of crushing anxiety won’t go away for the next day or two; it’ll slowly build up and creep into everything I do. I find myself making fewer plans for the upcoming days and spending more time at my mom’s place.
Within the next few days, my endocrinologist will have received the official report, reviewed it, and I’ll have to go in to see her to hear whether I’m still NED or if things have changed. I hope, with time, that this gets better.
Before settling on iodine treatment, patients often go through several rounds of chemotherapy. Although the treatment may be shorter than usual, the effects of the strong concoction you get before chemo can mess with you for years. Nausea and hair loss are common side effects of the treatment. Although I didn’t have to deal with substantial hair loss, the nausea was overwhelming.
Strong smells, blinking lights, and even flashes from the TV were enough to make me feel sick. Fortunately, the treatment only lasted a month, after which my doctor recommended that I go for radioactive iodine treatment. That procedure came with its own challenges, but chemo brain is an issue I struggle with to this day.
Doctors have told me that although my chemo sessions were short-lived, they have most likely been aggravated by the thyroid removal. Among other things, the thyroid also impacts brain function, and its absence can cause memory lapses, mood disorders, and the inability to do tasks sometimes that seemed easy before.
Having cancer and then suffering from guilt because you survived sounds like a madman’s musings. Unfortunately, it’s a very common phenomenon among cancer patients who’ve been declared NED.
Even if you don’t join a cancer support group, you come across many people in waiting rooms and hospitals that are going through the same struggle as you. Often, strong friendships are forged during this time of adversity that continue to support you throughout your life.
However, once you’re in remission, you progress to another stage of the cancer journey. Yes, it’s still riddled with challenges and everyday anxiety but it’s still one step forward from the treatment. The guilt that comes when other friends continue to struggle with the disease is unlike any other. There are people younger than me that came in with a better prognosis and are no longer in this world.
Seeing a friend struggle with cancer while you’re doing better often brings unhealthy feelings of remorse and depression. You often find yourself asking unanswerable questions. Why them and not me? What had they done to deserve this? What would happen to their loved ones? There are a million thoughts racing through your mind.
Survivor’s guilt is not easy to overcome but you have to remember that your victory doesn’t take away from someone else’s journey. Each person is unique and each person’s cancer journey is unique. The cancer may have gone away, but the only way to truly beat cancer is by choosing how you live and what you live for.
The anxiety and feelings of helplessness often translate into post-traumatic stress (PTS) for patients. The crippling anxiety that your cancer can return can manifest in many ways, including nightmares, mood swings, and physical pain. For the first few years, I noted that I would often feel shortness of breath and unusual tremors in my hand. These symptoms would aggravate as my scan date got closer and got better soon after the appointment.
My mom was the one that noticed this and took me to see a therapist soon after. To this day, I’m grateful that she did because I know that I wouldn’t have taken the initiative myself.
Talking out my anxiety did help with the physical symptoms of PTS to a great extent. I do still get scanxiety and all the accompanying negative thoughts, but at least the thought of recurrence doesn’t make me physically sick.
Another issue that keeps bugging me is whether I’m “fertile” or not. Radioactive iodine therapy is known to cause problems with pregnancy. Going into the treatment, my doctor explained all the possible side effects, including early menopause, irregular cycles, and delayed pregnancy. They asked me if I wanted to freeze my eggs at the time and I said no. To be honest, at the time, it was the last thing on my mind.
Coming face to face with your own mortality leaves little room to plan or even think about the future. Six years down the line, there’s nothing more I want than a child of my own. There’s a part of me that wants to know if that’s even possible. And yet, there’s another part that doesn’t. Because not knowing might just be better than knowing what I don’t want to know. Perhaps ignorance is bliss, after all?
It’s human nature to feel scared. I don’t show it, but the unknown future does scare me to my core. But isn’t life’s all about those bittersweet moments? Riding through the tough days so you can enjoy and appreciate the good ones that much more. Cancer is a part of your past, and it will impact your future, but it’s how you choose to move forward with that future is what truly counts. With the help of lots of therapy, I have learned to embrace and sit through my emotions rather than trying to control them. And to
A strong support system is essential even after you’ve been declared NED. My CareCrew allows cancer survivors to stay connected with friends, family members, and caregivers at all times. As one of the best apps for cancer survivors and patients, it can make it easier to navigate the cancer journey. This useful app for cancer patients keeps caregivers, friends, and family members connected and allows patients to coordinate help with ease.
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Unfortunately, for many cancer survivors, life after being declared NED is still riddled with challenges, anxiety, and pain that affects their lives. Staying connected with loved ones and learning from other people’s journeys can help make the process easier.
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