Recently in Remission for DLBC Lymphoma - how do others feel about not having regular scans?

Hi I’m now in remission for DLBC Lymphoma grade1E in my lower jaw bone. I had 6 rounds of R chop. I luckily hit remission after 2 rounds and had 4 more to make sure and my body was coping, I’m 50 year old male.

Reason why I’m writing is due to the after care I’ve been explained to from my haematology nurses. I had a CT scan 1 month after last chemo which came back ok. Then had meeting with nurse who explained no more scans now but I’m under them for two years any problems just phone and they will act on my concerns. I explained that I was under impression I would be scanned every 2 or 3 or even just 6 months for 2 years. She explained that they do not do that anymore because of unnecessary radiation exposure and the patient knows their own body and explained what relapse symptoms to look out for.

I’m happy in a sense not to have the scanxiety feelings the nervous wait out for results but at same time want their umbrella of safe guarding me for crucial next two years. My cancer has 30 percent chat nice of returning in next two years at least. Has anyone else been offered this new approach?

  • Helo Py49

    I'm sorry to hear about all that you've been through but it's great to know that your treatment has been deemed successful and your most recent scan showed no evidence of disease. 

    Although you have the safety net of knowing that you can contact the team directly if you have any concerns in the next two years, it's understandable that you're feeling anxious about there being no further scans. It is a fine balance of weighing up the risks of additional, potentially unnecessary, radiation by having regular scans and relying on the patient to notice any changes or flag any concerns they have. 

    Many people find that after active treatment comes to an end, they struggle with knowing how to move forward and the fear that a potential recurrence can leave lingering. Sometimes it can help to talk with someone about your concerns and strategies to help you move forward. It may be that there is an organisation such as Maggie's in your local area where you can access support but you can also ask your specialist nurse what services are available to support you. If you think it might help to talk things through with one of our team of nurses you're most welcome to give them a call. I know they would be happy to listen and offer any advice, information and support they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040.

    I hope that you have continued good health Py49 and that as time goes on you feel less concerned. 

    Sending my best wishes, 
    Jenn
    Cancer Chat moderator