Radiotherapy advice please

Hi Waterbird

I’m so sorry you have joined this constantly growing “club”. I had 5 weeks of radiotherapy back in 2019 for colorectal cancer.  The biggest problem I found was the travelling. My nearest hospital is 40+ miles away from my home. I suffered with bladder control, or more likely, the fear of leakage around 4-5 weeks. Other than that I was okay. Fingers crossed that you won’t have any problems. 

 https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/227598/radiotherapy-care-top-tips 

Hi,

You might find this a helpful read .

Take care ,

Court

Thanks you for responding so quickly Jools63. It sounds like you had a tough time, and coped with it very bravely. 40 miles is certainly a long distance to travel, let alone when you’re experiencing the problems you describe. I appreciate you sharing your personal experience so openly and honestly. May I ask, was the ‘fear of bladder leakage’ as a result of the radiotherapy, or an effect of the bowel cancer which was an extra problem to manage on long journeys? Did it continue for around 4-5 weeks, or begin around 4-5 weeks after start of radiotherapy? I was also wondering if this reversed after a time? I.e might the radiation cause permanent urinary incontinence? I’m sorry to bombard you with questions- I’ve read some people experience a burning sensation and wondered if there’s anything we can do to prepare for that?

Thank you Court. This looks very helpful. I really appreciate your reply. 
kind regards 

Hi I had five weeks off radiotherapy with chemotherapy tablets was petrified but I must say it wasn’t as bad as I thought didn’t really have any side affects was waiting for them to start the only thing was the tiredness which I just rested when needed to still manage to go out shopping go for lunches with my family this was over Christmas . Had my ct scan and mri scan and tumour has reduce by a large amount surgeon was very pleased so op on the 6th ! Your have the right attitude one day at time .take care

Thank you for taking time to reply Fraser1. That’s so good to know, and very encouraging to learn that your tumour shrunk considerably- what a huge relief. Will be thinking and praying for you on the 6th. Wishing you all the best.

Never apologise for asking questions. That’s why we share our experiences. The fear part was not to do with the cancer. I’m a female in her 50’s so the menopause causes bladder issues. The problem only seemed to worsen after 4-5 weeks. I suffered with thyroid problems 6 months after surgery, and that prolonged the issue! Try not to worry too much about bladder issues. The mind can wreak havoc on your bladder. Cancer causes enough damage to our bodies, so we really need to protect our minds. I certainly never experienced a burning sensation. Take care of yourself, and good luck.

My tumour shrank by 33%, which gave the surgeon the clear margins he was looking for to enable him to perform keyhole assisted surgery! Stay positive for as long as you can it really does help.

Hello Waterbird...I think a lot of us know the feeling when we were first diagnosed, we try to be strong and brave and at times we felt anything but.  Like you I had radio/chemotherapy, but mine was a chemo tablet, then off to the hospital for radiotherapy. then back home for a another chemo tablet, every day for 5 weeks, and luckily is shrank the tumour, and I had an op last November to remove it.  I must say it was not pleasant, but not as bad as what I though.  After the op you will feel a bit rough for a while, but I can honestly say that now nearly 4 months have gone I feel great.  I had lost several stone in weight, but now am eating really well.  I have had to have a stoma (non-reversible), but although I would not have chosen to have it, I just get on with it and its not a problem at all.  The stoma nurses are lovely and so helpful.  Regarding the hysterectomy, I had cancer of the womb about 20 years ago so had a hysterectomy, it did not take that long to get over, although I remember feeling quite weak after the op, but like any op, it just takes time to get over. Regarding waterworks!  I must admit my bladder seems a bit weaker than it was, but its really not a problem.  I do hope that you start your treatment soon as its the thinking about it thats worse, once you get started you can see something happening and know you are on the road to recovery.  Take Care x

Thank you so much MaryChar2046, you’ve addressed several of my concerns and I really appreciate your kind and understanding support. As you say, fear of the unknown is often worse than the reality- so I will definitely try to remember your wise words when I feel anxious. My week of radiotherapy is scheduled to start in 3 weeks time. Chemo will begin approximately 4 weeks after that, depending on how it goes…..In the meantime I’m trying to focus on researching how I can help to improve outcomes by maybe food choices etc. 

thank you again and take care x