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Likelihood of relapse in stage 4 cancer

12 Sep 2019 02:12

Hi everyone! 

When I was seventeen I was diagnosed with stage 4 non-hodgkin's lymphoma. I had six tumors all through my body (blood, bone, and organs) and the biggest was about 12cm in diameter, in my chest.

After lots of treatment I got the all clear - I'm under regular observation, but I have a lot of anxiety about relapsing, and I don't really understand the likelihood of relapse, despite talking to my doctors. 

I imagine there's a significant risk of relapse after stage 4 cancer - but does the fact that I got the all clear change that amount of risk? Does the risk really go down, almost to normal levels, after five years?

I'm three years out from treatment, and I don't really know where I stand. Every time I feel my fatigue worsen I'm convinced of the worst, but then find out I've just overdone it, physically. 

I think I'm afraid because originally, we only caught it after my lung was crushed by a tumor to the point where it collapsed. In hindsight I see the symptoms leading up to it... But that was stage four. What if I have a low-grade cancer growing, for example, but it's asymptomatic right now and so with no warning signs, no scans are being done? These are the anxieties that I have working on me! 

If anyone has any advice or anything, it would mean the world. Living with this anxiety is so difficult!! 

Love, Nísa 

Likelihood of relapse in stage 4 cancer

14 Sep 2019 11:17 in response to nisabp

Hello nisabp, 

I just wanted to welcome you to our forum. I can understand why you are feeling so anxious after everything you went through when you were 17. Being told you were stage 4 at the time must have made you feel understandably fearful of having a rellapse. Perhaps keep talking to your doctor or specialist about it and ask whether they can honestly answer the questions you have in your mind at the moment. Do stress with them that this fear is having an impact on your life and preventing you from fully relaxing and getting on with your life. Our nurses are also available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm if you also want to talk things through with them.

It is fantastic news that you have been given the all clear though and it is great that you are under regular observation. We have other Non Hodgkin's Lymphoma survivors on the forum who will completely understand what you are having to deal with emotionally at the moment. For example @Clive7982 ‍ posted his own story three years ago on this thread  he was also diagnosed with NHL as a teenager and mentioned having been cancer free for 34 years.  I hope that you will hear from others who understand how you are feeling at the moment and hopefully they will have some good tips for you to help you deal with this anxiety. 

Best wishes, 

Lucie, Cancer Chat Moderator