Newly diagnosed and quietly terrified

Hello Kate, First of all I wanted to welcome you to our forum. We have lots of lovely members on here offering advice and tips on what things they found helped them through their treatment journey. I can remember my very first visit with my oncologist and I was so nervous about what was going to happen. I was diagnosed stage 2 and I had just had surgery to remove this suspected tumour to see if they could get it all and clear margins but it wasn’t the case. Unlike you it had not spread but my oncologist said they were going to include zapping the lymph nodes anyway because things may be that small it’s better to go in hard. She then proceeded to give me the long list of side effects and to be honest it frightened me to death! I believe that the treatment seems to be standard if the cancer is in the anus or both in the anus and groin nodes. I was 66 and she said I will cope with the side effects as I was still young, wow. I am three years three months post treatment and just had my results of my last scan showing NED, no evidence of disease. I want to add that I did not get half the side effects but the ones I did get came on gradually and you dealt with them as they did. My treatment was the first day intravenous chemo and a radiotherapy session which doesn’t hurt and lasts about 15 minutes. The next six weeks was chemo via tablets twice a day and radiotherapy Monday to Friday and the last day was intravenous chemotherapy.

 I used STRATAXRT from day one which kept my external skin intact and around the fifth week I noticed I was getting sore internally. My skin didn’t turn black and from what I was told via the nurses it was doing rather well. One draw back from using the STRATAXRT is because it has to stay on the skin 24/7 twelve hours then reapply for twelve hours is that when you go to the toilet and clean yourself you have to reapply. Leeds hospital did trials on this gel and had great success but of course they said the costs were too high which is such a disappointing thing to happen when it has so many advantages. Also get a SITZ bath for easy cleaning and soothing when your skin gets sore. I wore loose soft cotton shorts style knickers a size too big and harem trousers or anything loose. For washing I used MooGoo which they use in oncology in Australia. I had an absolute angel of a specialist nurse who said to me on my first visit before treatment she was with me all the way to help with pain etc and that was so comforting. I’m not going to lie about the pain but it’s doable and you will find ways to cope and come on here and share with us as there is or has been someone who has had exactly the same. 

Unlike you I didn’t have a lot of pain before treatment apart from when I had the surgery but towards the end of the treatment there are medications to help with pain and creams are prescribed. Also don’t let yourself get constipated and choose a stool softener rather than laxatives. When you actually start your treatment you are given a schedule of times and you will start to feel more in control.

we will all be thinking of you

Julie

Hi Julie 

Thanks so much for your reply and I’m so pleased to hear of your NED update. 

I have a tube of Strataxrt but wasn’t sure where to apply it. Because my entire pelvis and anus with be targeted with radiotherapy do I put it all around there? Buttocks, hips and genital area? Thanks for the recommendations re stool softener, Sitz bath and MooGoo. Off to order them. 

I really appreciate you responding x

Hi Kate the StrataXRT is applied very thinly from your genitalia to your anus and around just there. That is where the radiotherapy is targeted. I didn’t apply all over the bum cheek just around the anus. When you put it on it should dry before you put your underwear on and if it feels sticky then you have applied it to thick. I purchased the large tube which they say should last all through the treatment and the two weeks after but it didn’t and I ended up purchasing another small tube. It took practice but you get the hang of it just quick and thin. Took me a couple or two goes. I didn’t put any around the tummy legs or bum cheeks but you could ask your treatment team. I will add that StrataXRT is the only gel you can use whilst you are having the radiotherapy as it is easily permeable via the treatment but any other cream you have to remove and apply afterwards. When you finish treatment you still can use this gel as it is not irritating and the perfect film to allow skin to heal. 

Julie

Hi Kate,

Welcome to the forum, I am sure you will find lots of help and advice here. I know I just found it so reassuring when I was first diagnosed to be amongst others with the same diagnosis.

I found as the treatment progressed I got relief from the pain of the tumour, but there are then possibly some side effects from the radiation and chemo. But we all have had different experiences, so although it's useful to read all you can just take it step by step and let the team who are treating you know about any issues you might have,

It sounds like you are well prepared, the only thing I would add is to give some thought to food. Make sure you have lots of easy to prepare snacks and things that you really enjoy, as you might just feel you don't have the energy to cook or you may lose your appetite a bit.

I am almost three years post treatment and all good so far. I wish you success with your treatment, and healing afterwards. Stay with us and let us know how you get on.

Hi Kate

You have come to the right place, ive not been using the forum for very long and everyone has been so nice and they are either going through it or have been through it. Can't really give you any advice as I start my treatment on the 30th september, all I can say is when I was first diagnosed back in July although I was really  scared still am iwas like I will just carry on as normal around my treatment but when i had my picc line put in it changed and I am now beginning to accept that may not be possible so I'm putting me first and gonna take each day as it comes, from reading on here and listening to my medical team everyone is different. So I guess I'm saying take it one day at a time. You will cope with whatever happens. You got this. Sending a big hug. Xx

Thanks Julie, my first treatment is tomorrow (intravenous chemo and then radiotherapy) so I will apply in the area you suggested and bring it with me. Did you put it over your tumour? I have an external and internal tumour. Need to remember to put it on in a thin layer - my skin has been so dry I am swimming in cream x

Good luck for the 30th! The waiting to start is difficult - sort of a limbo state. Thank you - the one day at a time is something I need to remember. My mind is trying to predict and prepare for any eventuality xx

I am so pleased to hear you are 3 years post treatment, I can't seem to think beyond the 'wait to see if the chemoradiotherapy has worked' bit. I'm struggling with appetite at the moment. Trying to eat small bits and snacks. I have started an online Tesco delivery so I will add more snacky things to that xx

Hi Kate my tumour was internal but just covered external area. I will add my team knew nothing about StrataXRT so could not advise. I had to send information from the StrataXRT website before she okayed it. I would look on there but I would cover it as it will be targeted by the treatment. The best of luck tomorrow and once you get your first day over you will feel more in control. I will also add the first couple of weeks you can get some cystitis symptoms so stock up with some cranberry juice or just drink like a fish. You should be given a phone number of a contact who is there to support you through and of course you have us. Many of us here are proof there is life after this treatment 

Julie

Just to add the gel no way impacts on the effectiveness of the radiation therapy in a negative way