Had My Post Chemo Scan Today

Hi Mr. K and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so I appreciate the challenges of this journey very well.

Many people see this journey to be like the worst rollercoaster and Scanxiety is indeed one of the challenges…… over my 23 years I have had many many scans and have had both “good news Mike” and also “Unfortunately Mike”

The important thing to ‘get’ is that most treatments do the job first time but some don’t, so some mop up treatment is required like some radiotherapy.

You don’t say what type of NHL you have and what exact treatment you received?

As I said I have a rare incurable type NHL that was very hard to treat (you can hit my Cimmunity name to see my full story)

It actually took 17 years to get me into a remission that lasted longer than 9 months…… but I am over 5 years in remission and living as good a life that any 66 year old can be living.

Always around to chat.

Hi Mr K

Feeling anxious at check up times is one more thing you have to put up with. 

I'm two years post treatment and feel fine but the "what if" thing still creeps up when check-ups are due.  These feelings lessen with time but I'm not sure you ever get rid of them completely.

Hopfully your results will all be good.

Hi Mr K

How long after your final chemo did you have your PET scan?  I have my last chemo next Friday and am already feeling anxious about the results of the PET scan that I haven't even had yet so I know exactly what you mean.  I was diagnosed with stage four non Hodgkins (DLBC) in late March.

If you need a PET scan after treatment, doctors usually recommend waiting:

• 3 to 4 weeks after finishing a course of chemotherapy
• around 3 months after finishing a course of radiotherapy.

This is because there might still be some activity where the lymphoma was, which could confuse the results.

I had no scans after my main chemo as we could see that the treatment had worked and as I was going into Stem Cell Transplant so they did not want to overload my body with scans.

Hi Mike

Yes you are right about the timings of the PET scan.  My consultant has said I will have one 3 weeks after my last chemo but the appointment for my 'mid' CT scan which should have been between chemo 3 and 4 came through just days before my 5th chemo.  That made me think I may have to wait longer than 3 weeks for the PET scan.  Obviously I would like it as soon as possible after the 3 weeks.  I just wondered how long Mr K had waited.  Having said that I suppose waiting lists vary from hospital to hospital.