Trial - still so unsure

Hi Debh1

I appreciate this is a very hard decision to make. I’m trying to put myself in your shoes and imagine what I would have done had I been offered the Plato trial.

Like you, I was diagnosed with advanced cancer, 4cm tumor and spread to pelvic nodes on the left hand side. The standard treatment worked and I’m now 12 months NED. However, its a long road ahead. I need clear check-ups and scans for 5 years until I am cured. This is the same for all of us.  Whilst the treatment is very effective, there is a possibility the tumor could return or cancer cells could spread elsewhere in my body. We all have to live and cope with the anxiety of this and hope that we make it to that 5 year mark cancer free.

In terms of long term side effects, we all have them trial or no trial. If you read about anal cancer you will learn what the common long term side effects are. However, these side effects are a small price to pay and are usually more of an inconvenience.

So what is the aim here? the aim is to get rid of your tumor, any cells in the surrounding tissues/muscles and the cancer in your nodes in order to save your life. As your tumor is on the bulky side, you want the best and right amount of treatment to blast it into oblivion. If the trial offers higher doses of radiation and therefore a decreased chance of recurrence, then to me, its a no brainer. Do it.

Maybe this little bit of factual information may help you to decide. I received a high dose of radiation. I had 28 doses of 1.9 Gray radiation. In total 53.2 Gray. I don’t understand the terminology however, maybe share this with your consultant and see how this compares to the dose they will give you on the trial. If its a similar dose, then you may wish to opt for the standard treatment. If its much higher then you know it will be giving you an even better chance.

As for any side effects, deal with the side effects if and when they happen.

I hope that’s been helpful.

Sx

Hi Deb, 

As I’ve explained in your previous post I’m in the Plato Trial but we differ in that I really had no decision to make as I wasn’t offered the standard treatment because I had very early diagnosis & surgery prior to treatment. I thought the trial was aimed at lower grade cancers but it sounds as though it’s very individual & can be tailored to the grading of your particular cancer. I had to sign legal papers before entering into the Plato Trial to give them access to all of my test results including biopsies, scan results etc., for the duration of the trial & as I mentioned before I fill in quality of life questionnaires every now & again that gauge any longer term effects from your treatment. I think personally the trials are more about collection of information on treatment & long term side effects as opposed to quality of treatment, by the sounds of it you’ll receive very similar treatment either in or out of the trial but obviously all of your information will be shared with the company in charge of the trial if you choose to take part. Also as I said before at 3-6 months post treatment if there’s no evidence of disease we’d usually be discharged from oncology into surgical care for the 5 year remission period before being given the ‘all clear’ & discharged totally but the trial dictates that we’re followed up by oncology throughout which for me is 3 monthly for the first 2 years then 6 monthly thereafter. I’m more than happy with that arrangement, it gives me peace of mind that I’m being kept a really close eye on as I’m checked by both oncology & my surgeon on a regular basis. Have you asked your oncologist if there’s any difference between the treatment you’d receive in or out of the trial? I know you’ve said it’s to increase the radiotherapy dosage so does that mean you’d be receiving a lower dose if you didn’t enter into the trial? Why not sit and write yourself a list of all the questions & concerns that you have about entering into the trial & take them with you to your appointment tomorrow, I’m sure everyone involved will appreciate what a big decision this is for you. 

Part of my willingness to take part in the trial was that as well as receiving the best treatment myself if the information they collect from me throughout my journey can help improve things for people receiving the same diagnosis in the future then I feel I’ve given a little back & I suppose if it weren’t for people taking part in these trials then things would move forward at a far slower rate. 

Hope this helps a little but as you’ve said as difficult as it is it’s a very personal decision. 

Good luck tomorrow 

Nicola x

Thank you both for replying, it really helps.

Deb x

Hi. I Googled Plato Trial anal cancer.  I found this https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/plato-personalising-anal-cancer-radiotherapy-dose/

Different treatment levels for different sizes of tumour. So not all aimed at smaller tumours. Sx

This is a really interesting and useful document, thanks!

There you go Debh1 there’s the information you need on radiation fractions. As you will see I had the standard amount for my disease staging. On Plato you will get considerably higher. 

Sx