so many questions, can you help?

Hi Beyond terrified  and welcome to the Group although I'm sorry you find yourself here. I was diagnosed with anal SCC in 2019 (T2, N0, M0). If you click on my user name you this will give you more information. Prior to chemoradiotherapy I had a biopsy and to be honest, I found the pain of recovering from that worse than the actual treatment.     In relation to chemotherapy, I had a one off short infusion of mitomycin administered intravenously on day one of treatment, followed by 8 tablets of capecitabine a day for 5.5 weeks, Monday to Friday. The chemotherapy was fine, the only side effect I had was feeing nauseous from day 2 to 7 of chemo. The side effects of radiotherapy build up, I felt the effects from about week 4, which were diarrhoea and tiredness.  However, some people go the other way and become constipated.  I took loperamide for the diarrhoea. For pain I took ibuprofen.  It is important to make the nurses aware of any side effects as there are lots of ways they can be alleviated, eg anti-sickness, anti-diarrhoea medications etc. It will also help if you moisturise your skin from day one of treatment, 100% aloe vera gel (alcohol free) is excellent, other people use aqueous creams but don't apply creams right before your radiotherapy session. The radiographers are also helpful with providing specialist creams should you need them. 

After treatment ends, the radiotherapy effects continue to build for 7-10 days. It was during this period that I was exhausted but this was mainly due to the fact that I had anaemia.  I found my tiredness went after about 2 months after treatment ended. I read some horror stories too before treatment.  I didn't seem to read any stories that seemed positive. Unfortunately, I didn't find this forum until I was almost through treatment.  The one thing I wish I had known before treatment was that these frightening stories about the treatment weren't reflective of everyone's experiences. I certainly didn't scream in pain and found treatment to be about 50% better than I had expected.  Going to the toilet was painful for a few weeks but going over water helps enormously.     You can get a sitz bath/bidet bowel, which is a special bowel filled with water that you can put in the toilet to relieve the pain of going. I used to go in the shower as I got radiation cystitis and that made such a difference.  You don't need anything special to clean the toilet but you may need to clean it a bit more  than usual for a while. Water wipes can also be much better than using toilet paper. I used to shower off with cool water then have a salt bath immediately after going to the toilet. I used plain table salt but you can also use epsom salts. Salt baths were my saviour, I would have 2-3 a day.  I would have lukewarm baths so as not to aggravate the skin that had been radiated.

I did not get radiation blisters, my skin only peeled very slightly. It went pink and that was it, the external skin was not sore. I didn't have incontinence and only suffered an 'accident' after drinking too much red wine.  18 months post treatment I do get some pains in my hips and a touch of sciatica on and off but then I can have good periods where there is no pain. My internal skin can be sore sometimes so I use sudocrem. Again, this doesn't happen all the time, it flares up now and again and is due to the newly formed skin being sensitive.

Finally, I would have no hesitation in going through the treatment again. It literally is a lifesaver.  It's a shame that you have come across such frightening information, please rest assured that it is not a forgone conclusion at all that this will be your experience.  Please do post again with any other worries or queries, there's loads of helpful people on here at all different stages of treatment who can help you.  All the best. Bev. x

1in1500 Bev your an absolute star X x x 

Hi Beyond terrified, glad you found this group.  I’m sure you found Bev’s reply useful.

Your questions are good ones but each person’s experiences are different.  That’s why it’s hard to get answers.  For example, I didn’t get any diarrhoea but I was incontinent for a while & still occasionally am 4 months after treatment.

My diagnosis was T4 N1 M0, the tumour & swelling feel like they’ve shrunk but I’ve no plans to get scanned as I’d rather avoid any more hospitals for the rest of my life!  But I’m glad I was given chemoradiotherapy.

Horror stories are rare; so are people who’ve enjoyed their cancer journey!  Success rates for treatment are high.  Discomfort & some pain is common.  Fear is normal.  There may or may not be long term side effects after radiotherapy - I’m still learning to cope with the uncertainty.

What I wish I’d known before treatment? - how to ask the medics questions which they could answer clearly & where the answers would be useful to me.

Take care, Toni

Hi Beyond terrified,

I’m so pleased you’ve found us although I’m sorry you’ve had the need to. You’ve received some great advice already so I’ll not go over things that have already been covered although I would like to echo something that has already been said & that is that everyone’s experience through this treatment is slightly different, there are obvious common threads such as skin reactions etc., but to such varying degrees, this is the one thing I wish I’d known prior to treatment as I wouldn’t have been so frightened. Going into something like this it’s only natural that your mind takes you to the worst case scenario & these are generally the stories you find out there on the internet, my oncologist warned me of this! You’re way better coming somewhere reputable, like this, where you can get support & practical advice from others that have been there. 

If you click on my username you can read a little about my story there, I had surgery first to remove a T1 SCC & due to a small portion of the tumour only having a 1mm clear margin I was offered into the Plato Trial for chemoradiotherapy, The discomfort following my surgery I would say was worse than that from treatment. As long as you make your radiotherapy team & oncology Dr’s aware of any side effects you’re experiencing there’s lotions & potions that can be supplied as & when you need them. Nobody wants you to be in pain. Pain relief, in my case, was alternating paracetamol & ibuprofen 2 hourly as any of the opiate based pain meds offered by the hospital (morphine & codeine based painkillers) caused me awful constipation.  My symptoms from treatment peaked around 11 days after my last radiotherapy session & following that recovery was much quicker than I expected & I returned to work part-time 5-6 weeks later. I had the onset of osteoarthritis in my hips prior to the treatment & do think the radiotherapy has accelerated this somewhat & I do now have sciatica, I didn’t suffer from this before but I’ll take that over cancer any day! 

There are a whole array of side effects you could get from the treatment but it’s very unusual to suffer them all. I had no side effects from the chemo other than my hair thinned a little, not enough for anyone else to notice though, I had no blistering from the radiotherapy although I had a couple of patches in the immediate area where the skin was a little raw but that was towards the end of treatment & once my skin reaction had peaked these healed really quickly. My new skin is a lot more sensitive than before but that’s managed by washing & moisturising with aqueous cream. 

You are in the worst place right now, once your treatment is underway the days will pass quickly & before you know it you’ll be through the other side. As 1in1500 has said knowing what I know now I would 100% have no concerns about going through  this treatment, it has saved my life! 

Finally just to echo what’s already been said, we have lots of lovely people here at all different stages of diagnosis, treatment & recovery so please keep posting if you’ve any concerns, questions or just need a little support from someone that’s been there, we’re always here to help support you wherever we can. 

Nicola  

Thank you for this Bev, I am due to start my chemoradiation on Monday 1st March, I too am scared to death so reading this has been a massive help, thank you xx

Thank you so much Bev for taking the time to reply, as my post was so long.  That's really helpful and has made me feel a little better.  i had been thinking of declining treatment but this makes me think I can give it a go.  I will let you know how i get on xx

Thank you so much Nicola for another helpful reply, I will no doubt post again as I go through treatment as really helpful to hear from people who have been there, xx

Thank you Toni for your reply.  I am totally with you on the medics questions :)  I will keep trying with that one.  All the best.  

Thanks Beyond terrified it’s most definitely worth the treatment, also it’s of a short duration which is good! Bev x

Sozza that’s good to hear. All the best for your treatment and don’t forget we’re here when you need us. Bev x