Chemo radiation - what happens next?

Hi superfly,

Firstly congratulations on finishing your chemoradiotherapy. My story is in reverse to yours I had surgery first & the chemoradiotherapy as ‘mop-up’ treatment due to a narrow clear margin on a small portion of my tumour.

From my experience & listening to the experiences of others on this forum it’s quite usual to wait 12 weeks after treatment has finished before scans to determine if treatment has been successful as prior to that there’s a lot of inflammation that can show up on the scans. Personally I had only a little discomfort prior to treatment, just slightly from my surgical sight, but I was way more sore after treatment had finished for almost 2 weeks then things began to heal quickly & the pain subsided again & I returned to work 5 weeks later. So give it a little time if you’ve only just completed your treatment, I was warned by my radiotherapy team that it was going to feel worse before it started feeling better. Also I was told that the radiotherapy continues to work in your body for some months after your final treatment so even when you’re feeling better & beginning to get on with things as normal it’s still there doing it’s thing! 

I’m presuming that providing the chemoradiotherapy has shrunk your tumour adequately you’ll be having a local resection? This is the surgery I had.

If you have any other questions please don’t hesitate to ask. 

Nicola

Thanks Nicola

That is really helpful. You are right , I do need to be patient. I must admit to being quite ignorant of this whole area so am rapidly trying to get myself up to speed with it all. I am doing quite a bit of research into this so will post anything else I find of interest as I go along.

thanks agin

Sean

Hi superfly

Nice to hear from you and well done on getting through the treatment.

I finished treatment last June after being diagnosed with a T4 tumor. I am very pleased to say that I’m 15 months NED and counting!

As my tumor was on the large side, I had the maximum blasting. I will echo what Nikki has already said. The radiotherapy is the main treatment for this cancer and is really working at its peak strength once treatment has finished. The rad is cumulative and usually peaks around 10 days post treatment. However, we are all different and my symptoms peaked pretty much straight after treatment ended.

For me the fatigue was the hardest and like you I couldn’t stand for long, I  felt drained of energy and for two weeks after treatment all I really did was sleep and move from the bed, to the loo, to the bath and back to bed again. I couldn’t really do much for myself. I had quite a severe skin reaction but wasn’t in pain. I managed the reaction with morphine gel and dressings. After two weeks, I turned a corner and slowed healed and gained back by strength. So how you are feeling now is to be expected and temporary, it WILL get better. Rest is key, don’t try to do too much too soon. What you will realise is that whilst the treatment is short, the recovery can be frustratingly long. Symptoms can linger and new things can pop up along the way.

As you’re facing surgery, its even more important for you to rest and recover to build your strength up. Have your medical team explained the potential surgery to you yet? I suppose they will want to wait to see how you’ve reacted to the treatment in 10 weeks time.

I hope you know that the treatment for this cancer is very effective, there are lots of positive stories on this forum that you may have read.

Take care and rest up.

Sx

Hi superfly, 

This whole thing is one massive learning curve that’s for sure. We’ve all started knowing little about this diagnosis & we’ve learned from others that have gone before us, learned as you’re doing by researching things ourselves & by asking questions (however silly or embarrassing they sound in our heads!) so keep asking those questions & there’s usually someone here that’ll have an answer or some advice. Now is the time to be kind to yourself, get plenty of rest as that’s when we heal best & hopefully you’ll begin seeing some improvement really soon.

Take care

Nicola 

Thanks Sarah

Your feedback was very useful and timely as I am now 5 days in after completing my treatment and trying to tell myself I must rest and not try to do too much. Indeed, I cant do too much anyway because I find I get pain from the tumour  10 minutes after starting to walk anywhere and the same with driving which is very uncomfortable. I am fine just sitting down- though not on a comfy chair- and ok walking around the house but thats about it. I am still on daily pain killers- morphine tablets and pregabalin and also have morphine syruph for breakthrough pain. I am hoping the pain will disappear over the 8-10 weeks of waiting for the scan but I assume that depends on how well the treatment has worked and if the tumour has shrunk ? Certainly, cant contemplate booking a holiday or anything as I am now. My tumour was T3n0m0 so is quite large but hasn't spread thank goodness. These 8 to 10 weeks are going to be tough waiting to find out if it has worked and the tumour has been shrunk enough to enable an operation, but as you say I need to rest and recover and build my strength up and just have to be patient.

So thanks again and I will keep in touch with progress

Sean x

Hi superfly

Really don’t expect anything too soon. Your body has and is still going through a lot. It’s okay to not do much, I think you’ve earn’t the the right! and it’s okay to take pain killers for as long as you need them. This is all temporary, things will improve and by the time your scans come around I promise, you’ll feel much stronger and the treatment will start to feel like a distant memory. 

My T4 tumor was completely gone when I had my 12 week scans and there are other people on here who had similar sized tumors who’ve had the same outcome. I hope this reassures you that it’s likely you’ll also have a positive response and possibly no need for surgery. 

Its a long wait for those scans and tough mentally. Your mind will role-play worse case scenarios but just keep telling yourself that the tumor is slowly melting away and will be gone. You’re going to have good and bad days in the lead up to the scans it’s to be expected. This is something we all have to live with as regular scans and check- ups will be the norm for years to come. 

I’m 15 months NED my annual scans are next week, I’m feeling very anxious already. It’s a horrible feeling, I hate it but there’s no running away from it, this is my new normal. 

Have a restful weekend. 

Sx

Hi superfly

It's been so interesting reading your posts ... and your profile ... because I'm a 61 year old bloke who was recently (July) diagnosed with a T2N0M0 AC.

On Friday, I had day 15 out of 28 radiotherapy treatments. My chemo tablets are 3*500mg and 2*150mg twice a day ... so 10 tablets per day.

My oncologist prescribed 30/500 co-codamol on Friday plus some senna if the codeine "bungs me up". And I've just slapped on a load of E45!

I hadn't realised just how my stamina had been affected until I went to collect a parcel from the Post Office at the end of week 1.

I know that I'm having it easy right now as far as side effects are concerned, but there's always that itch at the back of my mind.

I'm sure that everything is going to work out great for you!

Hi Andy 

Great to hear from you . Yes, our circumstances are remarkably similar !

I adopted a 'fear the worst and hope for the best ' strategy regarding side effects with my chemo radiation and luckily I came through it with few side effects. Sounds like you are holding up well so far over half way through your programme, but you are right to be cautious.  I moved on from co-codamol to morphine tablets but that was because the tumour was giving me problems. Its still giving me gip 6 days after the treatment ended so am still on pain relief but am hoping to come off it gradually over the next few weeks. Am also on pregabalin to deaden the nerve ends and senna like you.

Good luck with everything. The time seemed to fly by for me so hope its the same for you

cheers

Sean