Not offered chemo?

Hi Ddd213 and welcome to the board. Good news of no spread - I had to have a second scan on my liver which showed up a tiny lesion but apparently these are quite common, harmless and you could go all through your life not knowing you have one unless you had a scan on this specific area - they’re called a haema-something I think!

Are you sure your husband is having radiotherapy and not chemoradiotherapy where you have a zap of radiotherapy and then chemo in tablet form alongside? This is the usual practice as the radiotherapy can shrink the tumour making it easier to remove ( or sometimes obliterates it completely) and the chemo tablets are called capecitabine which helps the radiotherapy work. I had this for 5 weeks then a 8-10 week wait before surgery while the radiotherapy carries on working. 

I know this sounds a bit weird but I sort of forgot the tablets were chemo because you tend to think of chemo as being in iv form but I don’t suppose that’s a bad thing!

Take care and let us know how you get on 

Karen x

Hi I had rectul cancer and was given a 5 day intense radiotherapy course then had to wait 12 weeks as the radiotherapy keeps working. 

Radiotherapy shrunk my tumor to make surgery easier think that's the only reason I had it. 

I did not have any chemotherapy within my treatment plan. 

Good luck 

Bud

Xxx

Hi Karen, thanks for taking the time to reply. You were right, he is being offered chemo tablets along with the radio! I clarified this with his nurse (goes to show how important it is to have 2 pairs of ears at appointments) and similar to you will have 5 weeks of this, a 10-12 week break and then surgery after rescan. Can you please give me some advice re the radio? What to expect/side effects etc.. I see on your profile you had a lot of trouble with the surgery bit! I haven't gotten that far mentally....Im very happy to read that you are doing so well now! Best wishes and thanks again xx

Hi thanks for taking the time to reply. I hope your surgery went well and you are all in the clear now? Best wishes 

Hi Ddd213. 

To be honest I didn’t have any issues with the chemoradiotherapy. I was given a liquid soap to use in the shower on the bits being zapped  - some shower gels can contain tiny metal/zinc exfoliating particals which they don’t want to find remains of when treating you and a cream to rub into the treated area. Some people have struggled with soreness of the area being treated and pain when weeing and some fatigue. I had to have a full bladder and lie on my tummy to be scanned but I know my friend had to lie on her back with an empty bladder so not sure if this depends on the location of the tumour. The actual treatment takes about 5-10 mins -I used to request early morning appointments then there was less of a backlog if there’d been a machine breakdown then I’d go into work afterwards.

and AnnieMC50 both completely annihilated their tumours and are now on watch and wait with regular scans rather than surgery. I’m not sure if men have any other..ahem...  issues with the radio - maybe someone will be able to comment on that?

Yes I did make a bit of a meal of the surgery bit! Apparently the radiotherapy can weaken the bowel and it doesn’t like being dragged about in surgery so I developed a bit of a leak and an infected fluid build up but I’ve maybe only come across a couple of others who have had the same so I was obviously doing it for the attention! Was looking forward to my final appointment with the surgeon in a couple of weeks but it’s been cancelled as he’s going on holiday - think he might be avoiding me!

Anyway concentrate on the chemoradio for now - this ‘journey’ is a lot more manageable if you break it into stages and focus on each stage at a time. Your hubby sounds to be an almost identical staging to me and I’m nearly 3 years to the day since diagnosed. It’s not always pleasant but it is doable.

Keep posting - we’re all happy to share advice and experience

Take care

Karen x

Chemo is used to make the radio more effective, it weakens the cells of the tumour (and other cells). I had the same kind of diagnosis as your hubby but also had tablet chemo.

I would take it as a good sign.

Because there will be some parameters relating to size, type, etc that means it is not needed.

I hope you can relax a little, it’s the one thing I did right.

Hi Karen thanks again for the info. All these little details of advice really help me. Hubby seems not to want to know the finer points, but I'm the opposite! I want to understand and find out all I can, I somehow feel more prepared to face it that way.. Knowledge is power! Good luck with your rescheduled appointment, it's funny to think of surgeons having holidays lol. Our bowel consultant is away next week actually, so the mdt nurse has suggested skipping straight to the radiologist.. As long as hubby is happy to do that (and he is, he wants to get going on treatment) we are going to see him for the chat probably wed. Thanks again x

Hi gonnahavemestomafun, thanks for your reply. When i clarified with the nurse, she said yes it was chemoradio (goes to show the importance of having 2 pairs of ears at appointments) So we are just waiting to speak to the radiologist now. Although it's good to get the treatment started, the reality of it keeps hitting us... Still seems like living in a parallel universe... And Truly this illness is a test of patience!!! Thanks for the advice to relax. I'm having to limit my time researching (even on this forum) as there comes a point I can't take any more in, lol. Best wishes to you. 

Hi Ddd213. Yes I wanted to know as much as possible so I knew what to expect so wasn’t shocked when they said I would need a temporary stoma - hubbie preferred to know what he needed. I saw a member of the surgical team after being first diagnosed and the colorectal nurse but then went straight to radiology and didn’t see my actual surgeon until my pre-op meeting.

Its hard not to let this thing take over your life and I think I became (maybe still am) a little bit addicted to the forum boards comparing myself with others that were similar however we are all different ages, Fitness, have other medical issues and history so try to concentrate on yourselves and find some non-Cancer time whether it’s going out for coffee and cake, having a walk or just sitting in the garden with a good book.

Hope Wednesday goes well

Take care

Karen x