Refusing Treatment

Hi Cl4r3 ,

As far as I’m aware most of the members that have posted here in the 5+ years I’ve been here have had chemoradiotherapy, we’ve had one or two that have had a local resection which is only available as a treatment option if the cancer is diagnosed very early stages. Other than that providing there was no distant lymph node involvement or wider spread of the disease then the only surgical option I’m aware of is APR surgery which tends to be used if the chemoradiotherapy isn’t totally successful as it’s pretty radical surgery. I’m not sure how much you already know about APR surgery but briefly it involves having part of the colon & both the rectum & anus removed & stitched closed therefore requiring a permanent colostomy. We have members here that have had this surgery but as mentioned before this was usually due to either chemoradiotherapy not being 100% successful or recurring disease. 

I think as with many cancers the long term outcome without some kind of treatment can be bleak. 

The choice to have treatment or not is a very personal one but you’re still young & you will get through it if you choose to go ahead, there are many, many of us that have had successful treatment for SCC anal cancer & are back happily living our lives.…  I think possibly you need to have an in-depth & honest conversation with your oncologist surrounding your treatment options as I can only offer advice on things that I’ve learned along the way throughout my own journey & this will be the best person to provide you with all of the medical facts. 

I completely understand how scary it is to be where you are right now so please know we’re here to support you whatever your choices. 

Nicola 

Cl4r3

I don't know of anyone who has refused the chemo/radiotherapy.  I have to say it didn't occur to me.  I was just relieved that I was being treated and being honest, I had no idea that it was going to be so tough (for me).  But I would do it again?  In a heartbeat.  I have a wonderful life now and my life is back to normal; not exactly like before but nothing that I can't cope with.

Sometimes I worry that newcomers might be scared when they read of treatment and the side effects on here but it would be so unfair to sugarcoat it.  Personally I wish I had known of this forum and been prewarned when I started.  There is so much encouragement and support from those who have been through it, the sharing of coping strategies and tips, not to mention the help given by the cancer team in the way of dressings, creams and painkillers.  In the grand scheme of things a couple of months of treatment is short compared to a lifetime after radical APR surgery.  I'm afraid I don't know if anyone would be offered the APR surgery instead of chemo/radiotherapy,  that would be a discussion between the patient and the oncologist. 

My heart goes out to you, a cancer diagnosis is utterly terrifying.  And having all sorts of information, most of it unwelcome, whirling around in your head can be frightening and confusing.  I would suggest you have a real heart-to-heart with your oncologist and find out if there are other options.

And you know we are always here.

Irene xx

Hi Cl4r3,

I don't personally know anyone, but then, I don't think I've ever met someone else with anal cancer except in this forum. I don't believe surgery is an option just on its own, but I could well be wrong.

I think someone could opt for zero treatment and just pain relief, but possibly only in a hospice sort of situation. It would be pretty brutal.

The treatment is hard and no mistake. I agree with Irene that while we know it scares people at the start of the journey, it's much better to lay it all out there than sugarcoat it. If my cancer recurs, I don't know that I'd go through it again, but I'm really really glad I did it and am now having the chance to experience a better life. Not 100%, not just as it was. 

But so, so much better.

Hugs

Suz

I’m going to decline radiotherapy. It seems too horrific and I know I won’t cope with the side effects and I know people aren’t the same after.

I don’t mind chemo so much, so I will ask if there is anyway I can just have chemo and/or op. I don’t even mind having a stoma for life if it means I can avoid radiotherapy 

Hi Cl4r3 

I can understand why you’re so worried about the treatment. There were times when I was first diagnosed that I couldn’t bring myself to read posts on this forum as they were just too scary and my mental health couldn’t take it. 
I think someone has said here before that people tend to come here if they are struggling - those who don’t need support don’t tend to post.
I’m in week 5 of my treatment and this time next week I’ll be ringing that bell to signify the end of radiotherapy.
I don’t want to jinx it for myself but I honestly haven’t found it too bad (am I going to regret saying that?!), my skin has only just broken this week but with plenty of moisturiser and paracetamol (and Netflix) I’m able to keep comfortable. I can potter about the house and have continued to take my two dogs for short walks every day. 
It’s not fun! There’s other stuff I would prefer to be doing, but it’s 5 a few weeks out of my life and I am looking forward to holidays with my family and cocktails with my friends.

I agree with Nicola, talk to your oncologist and let them know your fears and keep coming back here to talk to us about what scares you the most.

Whatever you choose to do, we are here to support you. 

Claire xx

i had a stoma it sounds horrific but it isnt..i've got a hernia there now, so i'm having that fixed soon, i was offered a reversal but don't want that..with the chemo i wasn't too bad, bit of brain fog, wasnt tired, had few ulcers on lip for a few days so couldn't drink hot coffee, couldn't eat much chocolate, i got slight nausea but ginger biscuits or camomile tea helped...i just carried on as normal..the burns from radiotherapy are bad but its only for a couple of weeks, i got a sitz bath to sit in which helped but when i needed a wee i had a jug of just warm water and poured that down there. if i had to have treatment again i would definitely go for it. i went back to work earlier than i thought i would, still carried on hiking up mountains, holidays, swimming so it was all worth it for me

Hi Cl4r3 where you are right now I can understand the turmoil you are going through. Before my treatment I was lucky to find this site and would read members experience of treatment and the aftermath and quite frankly it frightened me to death. When I went to my first oncologist appointment she gave me a long list of the side effects and I remember asking her what would happen if I didn’t go ahead. She said she couldn’t force me but the outcome wasn’t good. I think I read that chemotherapy on its own can be used if you have cancer elsewhere too but the chemoradiotherapy is really effective in curing anal cancer. Cavab24 is right, you only usually read stories here from people who want help and those that didn’t experience hardly any side effects would unlikely post on here. Those that do come on here really need to be able to be honest and open on how they are feeling even if others may find it upsetting. I thought I would be suffer incontinence and not be normal again but I am great now nearly two years on. When you are going through treatment you will have a team helping you and prescribing creams and pain relief contactable 24 hours a day. The side effects if you get them don’t happen all at once and dealt with accordingly. I really hope your oncologist can help you choose what is best for you and we are all here to help.

I’m just scared. Absolutely petrified in fact. I feel bad even suggesting not having treatment as mum is going through chemo at the moment for bowel cancer and she just deals with it but I don’t think I can. 

iys my 40th in August too, and we have a birthday holiday booked early September. I feel this is just ruining my life right now. I just want this tumour out of me! 

Hi Cl4r3, yes I know you are scared and all us know how scared you are but you are young! I was thinking about my family and funerals and when I think about that now it feels unreal. Remember you heal far quicker when you are younger so you have an advantage and I am 68 and my oncologist said to me you are young and will get through it. I don’t know what stage you are at with the scans but you have sixteen weeks before you reach September. Let us know how you get on with your oncologist 

No because there could be cells in the body and the treatment kills them off and you risk it coming back that's what I was told