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NED – Now What?

NED – “no evidence of disease” – is the goal when someone is going through treatment for bladder cancer. Doctors rarely use the word “cure” when it comes to cancer. NED is the term used to describe when a person has no evidence of bladder cancer on any scans or tests.

After months of (sometimes grueling) treatments, numerous doctors appointments and countless tests, as well as all the soul-searching and emotional rollercoaster from being on this bladder cancer journey, it may seem like the pronouncement of NED is the balm that would solve all problems. However, it’s not that easy.

The challenges of living NED

During treatment, you’re in an active state of fighting for your life. You’re going to scheduled treatments, and your doctors are closely following your progress. Family and friends are rallied around you for support, and all your energy has a point of focus. Some people feel a let down when all this focus and support stops. It may seem like everyone is going back to their lives, and you are left with a big feeling of “Now what?”

In addition, many people who are NED after bladder cancer may be coping with significant side effects from the treatment they received, like learning to live with a new urinary diversion after bladder removal surgery or pain and fatigue. The treatments may be done, but the effects linger on.

Scanxiety

And then there’s the fear. Once you’ve had cancer, there’s always a chance of it recurring. Even the proclamation of NED isn’t fool-proof: while there are no signs of cancer on the scans, doctors can’t know for sure that there isn’t a micro-metastasis too small to be seen that may be somewhere in your body. Any scan, test, or scope may bring “scanxiety”. After bladder cancer, you may be hyper-vigilant about any new twinge of pain in your body, wondering if it might be a sign of recurrence. Fear of bladder cancer recurring is real and may change your perspective on everything regarding your health.

Coping with the fear

Fear is a natural reaction to a scary situation, and bladder cancer can be frightening. Emotions are our bodies way of processing information, and when we allow them to flow, they can be “e-motion” or “energy in motion.” Some tips to dealing with the fear of bladder cancer recurrence include:

  • Acknowledge the fear. Recognize what you’re feeling and give it some space. Keeping fear locked inside can make it persist or get bigger.
  • Bring it out into the open by talking with a friend, your support group, a counselor, or even writing about it in a journal. Shining light on your fear keeps it from being overwhelming.
  • Know the signs. Knowledge can bring peace of mind and help you feel more prepared. Learn about the signs and symptoms of a recurrence and what to look for. Ask your doctor what symptoms you should bring to his or her attention.
  • Change your focus. Experts say our brains can’t focus on fear and gratitude at the same time, so shifting your attention to all that you are grateful for can help ease your fear.
  • Try mind-body techniques for stress relief. Many of the complementary therapies like meditation, massage, acupuncture Tai Chi, or Qigong can help reduce stress and anxiety.

Comments

  • Faye
    10 months ago

    Al of the above have affected me and still do, somewhat, to this day. I have been living with bladder cancer for just shy of seven years and l’m still here. God bless each and every one of you who are enduring your new normal or reaching out for your new normal.

  • Alina Ahsan moderator
    10 months ago

    Thanks for being such a supportive member of the community, Faye – it’s people like you that make this a safe and welcoming space to talk about life with bladder cancer!

    7 years is such a long time! Do you think you found your “new normal”?
    -Alina, BladderCancer.net Team Member

  • Janet
    10 months ago

    Your article about fear and how to cope was very helpful. Since 3 urine tests were positive but biopsy was negative I have been very concerned. Feel as if I am sitting on a time bomb. I have started a journal. Just putting fears on paper has helped.

  • Alina Ahsan moderator
    10 months ago

    Janet, I’m so glad that this article was helpful to you! I think journaling is an amazing way to get the fears out of your head and onto a page. I wanted to share another article with you that you might be interested in since you expressed feeling like you’re sitting on a time bomb: https://bladdercancer.net/living/awaiting-diagnosis-tips-staying-sane/ Shirley wrote about feeling like her whole life was on hold and how to deal with it, so I thought you could relate! Please keep us updated on how you’re doing!
    -Alina, BladderCancer.net Team Member

  • Faye
    10 months ago

    Hi Janet
    I wish you nothing but the best on your bladder cancer journey. Talk to me anytime a out what you are feeling. God bless.

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