Anal cancer trial

Hi welcome to the online community and I'm sorry to hear of your diagnosis and the dilemma that you find yourself in.

I must admit I don't know anything about the trial you have been selected to go on but it is causing you great distress worrying about it and I think you need more information from your medical team to help you make a decision.

Whilst you are waiting for answers from the more knowledgeable members of the group than me can I suggest that you make a new post in the Ask a Nurse page and copy your original question to one of the nurses to give you some information. If you click on the green text above this will take to directly to the nurse question page where you should click on ask a question then paste your question and send it off to them.

I hope that we can help you find the answer and it enables you to make the right decision on the treatment available 

Ian

Hi 

Welcome to our group. Sorry you find yourself here however, be rest assured that you have come to the right place. This is the best forum to connect with other anal cancer patients all at different stages in their cancer journeys. You will be able to ask questions and get advise from people that really understand.

I was diagnosed with anal cancer last March, complete shock as the only symptom I had, was what I thought was a haemorrhoid. Sadly my cancer had already progressed to stage 3. I went through the protocol 5.5 weeks chemo-radiotherapy and in Sept was told my tumour had gone. I am currently 12 months clear - YAY!

You will read lots of similar, positive stories on here. The treatment, whether on the Plato Trial or not, is curative and very effective. The treatment is also manageable. Yes there will side effects and we all react differently, but you will get through with the help of your medical team, family and friends. Its short and sharp and over very quickly.

My friend Nikki65 was selected for the Plato Trial and went through the treatment at the same time as me. She will get back to shortly with more details about the trial. The treatment also worked for her and she is cancer free. 

You will need to take time off work how long however, will depend on you and how you react to the treatment. I’m assuming as you’re on the Plato Trial that your cancer has been found early. If this is the case your side effects may be less severe then maybe someone having a higher dose of treatment.

The radiotherapy is the main treatment for this cancer, chemo is secondary. Its unlikely you will loose you hair, although it can happen in rare cases. Most people however, just experience thinning. This is what happened to me about 2 months post treatment. 

Via this site you can also use the ‘Ask an Expert’ feature at the top of this page. This feature enables you to email an anal cancer surgeon directly for advise. In addition, there is a Macmillan phone line you can call anytime to speak with trained nurses.

I will leave it there for now as I’m sure Nikki will contact you very soon to talk specifically about The Plato Trial. 

Its a scary time, I remember the feeling well, but you will get through this and we are all here to support you. You are not alone and I urge you to use this site for any questions or advise that you may need. Someone will always respond.

Sarah x

Hi Sarah

Thank you so much for replying so quickly, and I am so glad you have recovered, its very reassuring to hear. I have not decided to try the trial yet, I don't know if I should take the PICC line route or the trial, don't want it coming back again or having further problems, just want to get rid of it. I thought it was piles as well, was very shocked to find out it was anal cancer, as there has been no cancer in my family or any history of this. My tumour is 3.3 cm and at T2 stage.

Can you tell me do you feel fine now, can you go abroad on holidays and get insurance, my life was so busy before I found out this and it feels like my whole world has come crashing down?

Kind regards

MaccI xx

Hi

This cancer is rare and sadly is often misdiagnosed as haemorrhoids.

Nikki will be able to help you make up you mind about the trial as I’m not sure exactly what the pro’s and con’s are. My tumour was 4.4 cms and I had spread to pelvic nodes. I had 5.5 weeks of chemo-radiation. My chemo was IV on the first day then oral chemo for the duration of the radiotherapy, so it was easy to administer and I was independent. Treatment can vary however, between hospitals. I was treated at Guys Cancer Centre, London.

Most anal cancers are thought to be caused by the HPV virus. About 1400 people at year get it in the UK. I’ve attached the Macmillan ‘Understanding Anal Cancer' booklet which is useful to read:

https://be.macmillan.org.uk/Downloads/CancerInformation/CancerTypes/MAC14811AnalE02lowrespdf20170307ALM.pdf

I am leading my life as I always did. My body has changed and I have some lingering side effects, but nothing that stops me from getting on with life. I was given the all clear in Sept’18 and flew to Porto in October ‘18 with my family (I am 47 with 3 kids). I’ve since been to Rome and will be flying to Greece in July. Insurance is not a problem, there are companies that offer it. Once you finish treatment thats it, there’s no other drugs that you will need to take. 

We are lucky in that the treatment is intense but short, we don’t have to endure months or years of chemo like other poor cancer patients. So you can heal and recover fairly quickly and get on with life. 

Sarah x

Hi Sarah 

Thanks for replying you have really been supportive, did you have to wait three months after your treatment was finished to get the all clear to be able to go abroad or could you go after the treatment was finished, like mine finishes at the end of July?

I am so glad you are getting on with life, you are so brave. I am 49 and just feel that I can’t plan or do anything anymore, I had a holiday booked for September which I have had to cancel, so I am really upset about, but I know I have to get myself right before making any plans.

Best wishes

Macci xx

Hi

You don’t have to wait for the all-clear in order to fly. What usually happens is you have a 6 week review, post-treatment. If at this point you are feeling well and your oncologist ok’s it, you can fly before you post-treatment scans are done.

I had a bad skin reaction (doesn’t mean you will) which meant it was very uncomfortable to sit and walk for long periods. I therefore, waited for my skin to heal before taking any long distance journeys.

I to had to cancel my summer holiday last year. My treatment ended mid-June and I was due to fly to Athens with my family a month later but just wasn’t well enough and couldn’t have tolerated the journey and all the island hopping we’d planned on doing.

You will need to put things on hold for a little while, a few months minimum. Your focus will be your treatment, getting through it then recovery. Everyone recovers differently. I took 6 months off work altogether. I could have gone back sooner but I wanted to get the results of my post-treatment scans before returning. I was also teaching at the time and lucky for me, the school summer holidays coincided with my recovery. Some people on here have returned to work quite quickly after treatment 6-8 weeks later! Everyone’s different.

All your energy and focus will need to be on this treatment and getting better. Once you’ve had your post-treatment 6 week review you should be able to start planning ahead.

Sarah x

Hi Sarah 

Thanks for all your advice and your time I really appreciate it. You must be getting fed up but you have helped me understand so much more, I am just scared to death and driving everyone mad. Glad you have overcome it and you are able to have a good year this year now, but could I ask you what side effects have you still got, I know we are not all the same but I would like to know what I could be in for?

Kind regards

Macci xx

Hi Macci I flew to Dubai the week before treatment started it was half term so had to go this week. It was a bit uncomfortable on the 7hr flight but kept swapping bum cheeks! Onc said would be fine just wear compression socks on the flight. I finished July then went to Croatia in August again All was fine skin had healed but was tender. 

We was just careful while away hopefully you will be the same I don’t see why you can’t keep holiday for September?? But if you can reschedule this might be better?? 

Amanda xx

Hi 

I never get fed up of helping people on here. This is what I do now, help others to be better informed and offer support and advise.

It is really important to know that side effects are very individual and can vary quite considerably depending on staging, location of tumor, any underlying health conditions and age. Also treatment can vary between hospitals, particularly the chemo, so this can also affect things.

There are short term side effects that you will experience during treatment and beyond. Most people experience bowel changes (things can become very loose, frequent and urgent), skin reactions (skin can become sore and broken), tiredness/fatigue and nausea. Some people also experience loss of appetite, hair thinning, weight loss, tingling in hands/feet, headaches. 

Longer term side effects include ongoing bowel frequency/urgency, fatigue, aching/stiffness in hips/legs and vaginal stenosis which can affect sexual function, premature menopause. 12 months on, other than menopause, I am still experiencing all of these side effects to some degree. However, things improve all the time and nothing gets in the way of me living my life as I always did. The main thing for me is the aching and stiffness which I ease with regular exercise and taking supplements. Remember also that I was Stage 3 so had a high dose.

Its also a total emotional roller coaster be prepared to feel strong and determined some days and weak and hopeless other days. Your mind will play ticks and get you thinking all sorts of dark stuff. All part of the process and all temporary, just remember that.

Feel free to keep asking questions. It can sometimes be a very fine line between enough and too much information. However, if you’re like me, whilst some things maybe hard to hear, I felt better the more information I had.

Try not to Dr Google, it never ends well. Always come on here if you want to know something.

Hope this helps.

Sarah x

Hi Macci, 
I was diagnosed back in  summer 2017 and was a participant in the PLATO trial. 23 days treatment instead of 28 days.Radiotherapy was a weaker strength too.Treatment started in Sept 2017 and ended beginning of October 2017

I was unsure at first whether to choose the trial as i wasn't sure if it would clear the cancer, but i decided that they weren't going to treat anyone with a treatment that wasn't going to work..I can only go on the details given by participants on here, and my side effects seemed to be less severe generally. I only had 1 infusion and NO pic line, oral chemotherapy meds...Also i had NO operation as my specialist in Cardiff said that they had found that treatment had worked and cleared the cancer with out having to use surgery.. 
My hair did not fall out but it did thin slightly.. but you would never notice..I know its hard and upsetting to come to terms with the diagnosis but the treatment is hard but short and is over quickly and it does the job!!!  
The PLATO trial seems to be used on smaller tumour, which mine was and early diagnosis..
I feel incredibly lucky to have been diagnosed early and the trial benefited me.. My treatment was successful and i am 20 months cancer free !!!.
You can do this !! 

Sue