Hi. My consultant has confirmed my staging as T1NOM0. I've been approached to take part in the Plato 4 trial. My question,. The trial is randomised, when do you know if you are on the reduced or standadised treatment. Do you only know at the end, when treatment finishes at 23 instead of 28 days? This forum appears to be so practical and supportive, it's great. Thankyou all.
Hi Positivepeople,
I was also diagnosed T1N0M0 in February 2018, my tumour was removed successfully surgically in March 2018 but with a small area only getting a 1mm clear margin, because of this after 8 weeks recovery I was offered into the Plato Trial Act 3 although it was never mentioned to me that it was randomised. I was told as there was no actual tumour to treat & this was basically ‘mop up’ treatment it would be reduced strength radiotherapy for 23 sessions instead of 28.
Hope this helps.
Nicola
Hi Bev (Positivepeople)
From my planning scan, if I remember correctly, I was a couple of weeks before starting treatment.
The radiotherapy beam is obviously directed at your tumour site & the machine that delivers the radiotherapy travels full circle around your pelvis whilst delivering the radiation. You’re asked to drink a set amount of water half an hour before each treatment to lift your bladder out of the way as much as possible as everything in your pelvis gets some fallout from the treatment. It can irritate your bowel too. It’s not unusual to get a bit of stiffening in your hips, lower back & also thigh muscles following treatment but in most cases this wears off in time.
My side affects were pretty minimal during treatment compared to some. I didn’t get diarrhoea like a lot of people do, I did suffer radiation cystitis around the end of week 2 & that was a little uncomfortable but keeping a jug of water in the loo pouring it over as I used the loo helped. Many people advised on getting a portable bidet (fits over the loo seat) but I only used it once although others have said they couldn’t have managed without one. I was provided with creams by my radiotherapy team from day 1, aqueous cream to apply after each session & at home (moisturise, moisturise, moisturise). I started to get a bit sore (front & back) around the end of week 3 but was given flaminal cream (a burns cream) to use thereafter. I continued doing everything I would normally do throughout, saying that I didn’t work throughout treatment & found I needed a ‘nana nap’ in the afternoon, the fatigue can hit you out of nowhere but take it easy & listen to your body, rest when you need to rest is the best advice I can give. My side affects peaked around day 11 post treatment & things were quite sore, I alternated paracetamol & ibuprofen 2 hourly for pain relief as anything opiate based caused me constipation which is not something you want at this time! from then on healing happened pretty quickly. Also get a supply of Epsom Salts or similar in as when things got a bit sore & irritated a salt bath was very soothing.
Be mindful that this is a very individual experience & everyone reacts a little differently. If I could have offered myself a piece of advice prior to treatment it would have been don’t worry about it until it happens. I went into it with dread of the worst case scenario & this simply didn’t happen with me.
Please don’t hesitate to ask if you have anymore questions, we’re an open, friendly bunch here & are always happy to help & support where we can.
Nicola
Hi Bev,
I found this forum the same day as I was diagnosed & it really was & has been my saving grace! Because anal cancer is quite rare just to be able to have contact with people that had been through the same as what I was facing & were through the other side living their lives was invaluable & instrumental in the way I faced my treatment & life after. Please feel free to contact me anytime.
Nicola
