Further treatment after surgery and radiotherapy

Hi LRR

I hope that you are recovering ok from the surgery and radiotherapy. 

I had surgery followed by chemo and then radiotherapy in 2022. The decision for further treatment was taken when my post op results came through. This seems to be the normal way they do it. 

When treatment was finished I had an appointment with the radiotherapy consultant around a month after the last session. I was examined, asked questions and then referred to the nurse clinics for follow up. I was then seen every 12 weeks for 2 years. I then went on to patient led follow up. 

There wasn't a test or a scan to see if the radiotherapy worked- it was more onto check ups/ looking for signs/symptoms. If there were any concerning signs or symptoms then I was told I would be referred for a scan. 

There can be differences between hospitals though. 

I would expect that you will get an appointment in the next 4-6 weeks or so to go to see your consultant to see how you are recovering. If chemo was needed I would have expected them to have mentioned it to you when your post op results came back and I would have expected you to have a referral to a chemo consultant to discuss it. 

You could contact your CNS and ask what happens now with your hospital, whether you will be seeing  the consultant again and whether there may be any further treatment or whether it is on to check ups now. 

Jane

Thanks for your reply. After the op I was scheduled to have chemo then radio, but at the last minute they changed to radio first, guess Ill just have to wait for the scan - that's what they told me and hoping no chemo needed 

Some people have radiotherapy first and some people have chemotherapy first. It can depend on hospitals. 

What I would expect to happen is that you will have an appointment with your radiotherapy consultant at around a month post treatment to check how you are and then if chemo is to go ahead- to be referred to the chemo consultant who would discuss the treatment with you. 

Fingers crossed that you can avoid the chemo but if you do need it- I actually found it more manageable than the radiotherapy. It was hard at times, but doable. 

Mine was Stage 3a, I had radio first, but had been sent appt dates for the chemo before I even started the radio. Saw consultant 6 days after completing the radio and he said I was doing so well I could start the chemo the next day! This was 2 weeks earlier than the appt date I had. I wanted the break so I started chemo 3 weeks after completing the radio. I didn’t have a scan until 3 months after finishing treatment.

saying that I assume that as yours is 3c and you mention scan, that will be next step. Do you have a date for the scan?

I know, I really struggled with the radiotherapy - nausea, loss of appetite, terrible diarrhoea (daily), tried different meds - best thing was I lost 8kg but I literally just slept when I wasn't at the hospital. Some people were still working through it - god knows how!!!! Anyhoo, onwards and upwards lol 

Not yet but the hosp said about three weeks, and I've got a telephone appointment next week. I just find them very vague at times and its good to talk to people who have had the same experiences. or similar 

Sounds familiar! 

The thing with chemo is that it is normally a 21 day cycle. So one day at hospital and then home for next 3 weeks. First week I did feel rough but after that felt able to do things. There were days when I felt ok. 

Exactly - that was my original treatment plan too. However, I'm going to ask about immunotherapy because apparently as I have dMMR/PMS2 (just copying off my notes) , immunotherapy offers long-lasting remission rates for patients with Lynch syndrome - Im presuming this is available - but will ask.