What next?

Hi Brian, well done on finishing your treatment. As far as check up's and scans are concerned, I thought it was standard throughout the NHS. I had a check every 6 weeks the first year then 8 weeks the 2nd. 12 weeks the 3rd. Then the last 2 years are 6 month checks, I had an MRI scan after 12 weeks. However with covid this has no doubt  changed a lot of things, if you are concerned about anything if you give your team a call, I'm sure they will see you if you are worried. All the best.

Regards Ray.

This is a very interesting question, and I’m not sure there is a definitive answer.

It seems to be that follow up does vary according to the particular cancer, the effectiveness of the treatment, the particular hospital, and the specific needs of the patient.

After my treatment ended in May the treatment was considered successful, but my cancer was one which apparently has the highest rate of recurrence in the first 18 months, so I will be monitored in that period.

But there was no set plan conveyed to me, I just get a new appointment scheduled after each check up and they seem to be about every two months, although I have had an appointment cancelled and re-scheduled, presumably because more urgent cases come up.

I don’t have any follow up scans scheduled as routine, so don’t expect another one unless symptoms indicate it is required.

But what is important is that I still have a contact number for my team connected to the ward I was treated on and it has always been made clear that if I have any new symptoms or worries I can phone on that and will be seen quickly if necessary.

It can feel a bit scary when treatment ends and there is no follow up set in stone, but I’m sure your team will know what is right for you and you will get appointments as appropriate. But if you have any worries, do contact them.

Wishing you the best of luck with your recovery.

Hi Brian. This is the recommended protocol PROTOCOL

Duration and frequency can depend on each centre but most follow it. This is the way I have been monitored as well

I was seen by my oncologist six weeks after my RT was finished. It was the first time I had seen him since we went through the consent form together. If I was you I would contact your CNS to clarify things

I know that patients with oropharyngeal cancer get either an MRI or a PET/CT at around 16 weeks

Hi Brian, I think Cathy, Ray and Dani are right. From my own experience I was seen a month after treatment ended, then at 6 weekly intervals, alternating telephone calls and face to face due to Covid.  (I have a face to face today in fact, the first time I’ve actually seen any for face to face July 6th.) I had a phone call September 7th so with today’s meeting we seem to be at eight week intervals at the moment.  I am sure there is a protocol but the medics are so damned busy they may need to be asked what it is. (Oh for a simple handout!)

As for scans, I was initially told by my ENT team that I wouldn’t have any more scans as a matter of routine, but then I was called in for a ‘baseline’ MRI out of the blue by my oncologist 16 weeks after treatment ended. I was then dismissed from oncology. (I’m not convinced the departments always communicate that effectively. Again, busy busy busy!) The important thing is, as Cathy says, that we have a direct line to our teams if we need it and from experience I’d say they’re very good at hauling us back in if it’s needed.

I am sure all of our experiences are a little different depending where and how we are being treated, but they will certainly keep a close eye on you during this first year especially.

Wishing you the very best. M

There is a "protocol" and the answers below have eluded to what it is.  My consultant told me that he would stretch the protocol when I saw him a couple of weeks ago from 6 weeks to 8 weeks for checks as that suited me better.  I've checked NICE and there is nothing written down that I can find in just a quick search.  Maybe the protocol comes from one of the Royal bodies as professional leads??

PFJTHS said:

  Maybe the protocol comes from one of the Royal bodies as professional leads??

yes it does BAHNO recommends it amongst others. NICE haven’t updated anything in that respect since 2018

Thank you Ray. I am sure they would see me if i am worried. But not knowing what to expect and not knowing what I should be looking for is worrying.

Hi Dani, et al, Thank you again for the speedy replies and advice. You guys really do help!!!!!

Hi Brian, 

Good to hear treatment finished and hope you are OK. There do seem to be the odd differences as with some elements of treatment.

I had weekly phone calls April/ May this year from CNS team for 1st 6 weeks. Then 6 weekly face to face, which will be for the first year, phasing out over the 5 years much as everyone else has said  I had a PET CT scan at 13 / 14 weeks. My first face to dace was with consultant, cns, slt and oncologist, same with 2nd. Since the scan just one of consultants team with full checks and nasedoscopy. You should also get a call / appointment from your GP in the next couple of months to check if you need anything from them. 

Since my scan I haven't seen any of the team who treated me. I was told I was in remission by a doctor 'who has been doing ears the last couple of years', confirmed by the speed he whipped the camera out my nose!! He said 3 months to next appt, as I had been told 6 weekly by my team I asked for that and he agreed. Point of that ramble is don't be afraid to drive it yourself if you need to. 

Good luck with recovery and take care

Ronnie 

Brian, you are very welcome. It really is unnerving being pitched out on your own after such close monitoring while in treatment. It helps having some sort of structure...particularly in your first year.

Take care