Organ preservation

Hi Jane. I’ve attached a couple of links below which might help with the talking to children?

https://www.bupa.co.uk/health/health-insurance/bupa-cancer-promise/i-know-someone-with-cancer

https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/talking-to-children-and-teenagers?_ga=2.193753197.1512497443.1621066049-1588835911.1621066049

I had chemoradiotherapy and it shrank my tumour from 4cm to 1cm. I was lucky not to suffer from any major side effects and was able to continue working throughout. The actual zapping takes about 10 minutes but there can be a lot of waiting around for machines so I used to get an early morning appointment to try and avoid this. I used the cream that they gave me on the area being treated and used Aveeno with Shea butter on my hands and feet. You may suffer from diarrhoea but will be given immodium/loperamide if necessary. You may feel fatigued but, to be honest, I tried to just carry on as normal and played it by ear.

Unfortunately everybody reacts differently to treatment and others have suffered with fatigue and diarrhoea even a couple of weeks after finishing treatment so it’s hard to predict how you will feel.

Hole you have a good response to the treatment 

Take care

Karen x

Hello Karen, thank you for your reply. The links you sent are very useful, thank you. Also, thank you for sharing your experience and tips.  

Hi Jane

I'm currently at home recovering from APR surgery that I had just over a week ago, I was given the option of chemoradiotherapy but based on the information I could find it seemed to me that there was a potential for more issues by going that route, my diagnosis was stage T4 N0 M0 so slightly different from you so fingers crossed it works for you!

I just wanted to say really that although the operation is major and the recovery time can take months apparently so far its been a million times better than I was expecting for myself.

I'm having to side sit or lay on the sofa mostly of course but can manage some sitting on the air pillow I was provided, I live alone so do have to make myself food and drinks etc all of which I'm able to do, just moving slower than usual, pain is very little if I'm honest and I only really have a stinging sensation down below. dealing with the stoma again has been way easier than I thought it would be too.

Now I'm not saying everything is great of course it not but from what I was expecting ie. Lots of pain, having to rely on others for weeks or months, its not been to bad at all.

Good luck with everything and I hope it all works out!

Thank you for your reply. I am glad that you have had a good outcome following the APR surgery. That gives me some hope if I still need to go down that route in future. I also have concerns about the chemoradiotherapy route. I will be receiving 5 weeks of treatment, and the chemo will be 5-FU.  Do you have any advice regarding your findings about the chemoradiotherapy route that you could share?

Hi again Jane,

With regards to the information I found which was mainly via Google and YouTube (avoid websites) I looked at some of the research papers and viewed some of the international conferences that discuss these things, you do have to sift through some doctor speak but the jist I got was that a lot of the organ preservation work was still relatively new its mainly used to shrink tumours rather than be a curative standalone option and studies of longer term effects were not really available again due to the time it takes for these studies to be done over say 10 years etc and that there was no uniformed criteria on some of the studies carried out previously so results differed from study to study. If I find any of the links I'll post them.

The main things I came away with regarding my personal situation was that the chemoradiotherapy route would only offer a small chance of getting rid of the tumour completely and with my tumour being so low down the surgeon said if it didn't remove it all then APR surgery would still be needed anyway but it would then potentially be a lot more complicated due to the radiation damage etc, if the chemoradiotherapy was successful in removing the tumour then there was a 1 in 4 chance of reoccurrence, a chance of becoming incontinent etc.

So again for me and my personal situation I didn't think it was worth the risk of all these additional issues for such a small chance of avoiding APR surgery.

I would really recommend speaking to your MDT guys about any worries or questions you have though!

Best of luck

Dean