Looking for advice for my mom

Hi Cathy,

Really sorry to hear that your mum has this to face. The thought of radiotherapy is undoubtedly frightening and not something anyone would wish to go through... 

I'm no doctor, but I'd say leaving it and not treating it would give more potential risk in the long run. The chemoradiation for anal cancer has a very high success rate and is usually curative... obviously everyone is different and there are no guarantees, but without treatment, the cancer could spread further and cause more problems. 

I just completed the treatment 4 weeks ago for stage 3 with spread into lymph nodes and pelvic muscle. I was misdiagnosed for over 2 years and that time allowed this spread. The side effects can be pretty tough to get through, but so many of us here have got through it and have recovered well. Once you get started, the radiotherapy doesn't have to be such a frightening experience at all. I found the staff and nurses to be so kind and supportive and 6 weeks flies by so fast once you get into the routine of it.

The most difficult side effects for me (and most others would likely agree) are the soreness and skin reaction, which can make going to the loo pretty painful for a time... but it is all completely worth it to become cancer free. 

I hope your mum can come to a decision that is right for her. If she does decide to go ahead, there is a lot of support and advice to be found on this forum. There's always someone with some experience to share if there's anything you are unsure about.

All the best going forward,

Jenna xx

Hello Cathy,

I’m sorry about your mum’s diagnosis which must have come as a shock to you both. I think it’s very normal to be overwhelmed by it and the worries about what might happen.

 I think the risks of not having the treatment are far greater. The treatment is really effective with a very good success rate. I was diagnosed with T2N1 last September, which meant it had spread to the lymph nodes. My 6 month scan showed a complete response to treatment. The treatment is doable and your mum will be supported throughout. Some of us do have bowel issues following treatment but these are manageable and better than the alternative. For many this settles down and although some go on to have a stoma most people seem to get back to a ‘new’ normal. 

The side effects I have now are some unpredictability with bowels but definitely not to the point of incontinence, some excess wind and bloating, and back pain which may or may not be related. I am immensely grateful to be cancer free however. 

Everyone on this forum has been through or going through treatment and there are so many positive posts about recovery and getting back to living life again. I hope the fears don’t stop your mum having treatment. I know all the worst fears are there on getting diagnosed. It’s a scary time. We are all here to answer any questions or to help if we can. 

Hugs to you both xx

Hello Cathy,

I was diagnosed and treated with radiotherapy and chemo in 2021, perhaps similar to your Mum, although no surgery. I was T2 N1 meaning i had some spread to lymph nodes too.

The knowledge that this treatment can be curative meant that I didn't hesitate when it was recommended, and it was actually okay. The radiotherapy team who looked after me were great and as soon as I mentioned any soreness or itching as the sessions went on they reacted immediately.

I drove myself to the clinic (a two hour round trip) every morning, but I was pretty tired so had a snooze in the afternoon after lunch.

In the mornings found I had to go to the loo as soon as I got up, and was a bit windier than before, but as the treatment finished and my body recovered, this lessened. 

So I am now just over three years on, and more or less back to normal. 

Please ask your Mum to have a read on this forum, there are lots of us who have undergone this treatment so she will get a good picture of what it's like, and although we are all individuals and react differently, she will see it is something she can do. The support will be there for her - from you, from the medical team and from the people on this forum who have all been there or are undergoing treatment right now.

I wish you and your Mum all the very best xx

Hello Cathy

Your poor Mum, she sounds so worried, and you too.

I was one of the ones who had quite severe side effects - not exactly incontinence but difficulty in passing stools because of anal stenosis.  I underwent surgery for a stoma formation last year and I can honestly say I have never looked back.  However, I am in a minority, as far as I know there isn't anyone else (on the forum) who has had an elective stoma for the reasons I did.  I also have painful hips and am under the hospital for further treatment.

What I will say is that there isn't such a thing as watch and wait with cancer, she runs a huge risk leaving it.  It is not going to go away.  Even with the side effects, if I had to, I would have the treatment again in a heartbeat (not entirely happily, I must admit, it is tough!)  I have a new normal, but it isn't anything I can't cope with and life is good.  I live with this because I couldn't contemplate the alternative. 

Unfortunately there is no way of knowing just who is going to have long-lasting side effects; we sometimes have old forum members revisit and they tell us they are back living their best life, so it really does happen.

I wish you all the best in helping her navigate this, and you look after yourself too!

Big hug

Irene xx

Hi Cathy28051e3d97 ,

Welcome to the MacMillan Online Community although I’m so sorry to hear of your mums recent diagnosis. All of us here can I’m sure completely sympathise with her regarding the fears around the treatment & its side effects. It’s a very personal decision to go forward with treatment or not but I would think this would be her only chance of cure. If there are still cancer cells present the watch & wait process will only allow the cancer to progress & there's a high chance that it will metastasise. 

I was diagnosed T1N0M0 & although my tumour was surgically removed as first line treatment I was advised to have a reduced course of chemoradiotherapy due to a tiny portion of my tumour only having a 1mm clear margin, so even though the tumour was completely removed I still went ahead with the chemoradiotherapy. The chances of your mum needing a colostomy with a T1 tumour are low I would have thought. Personally I’m 7 years post treatment & if I had my time again I would choose the treatment the same. There are lots of our lovely members here that are testament to this treatment working & we’re now living our lives cancer free. 

It's such a difficult time for you all, I hope your mum manages to come to the best decision for her & I’m sure you’ll support her in whatever she decides. 

You're obviously very welcome here & it’s where you’ll get answers about all things anal cancer related but if you feel you need a little extra support yourself we also have the Family and friends forum  where you can chat to others who are supporting someone throughout their diagnosis & treatment etc. 

We’re here to support you both however we can. 

Nicola 

Hi Cathy28051e3d97 I'm sorry about your mum's diagnosis. The treatment can be tough but we all react and cope differently with it, but ultimately she has to make a decision she's happy with. I can honestly say while it wasn't a walk in the park it wasn't as bad as I expected. Personally if the doctor has advised the treatment I would do it. Im coming up to 9 months post treatment and cancer free as far as I know. The lovely Irene75359 who has already responded had a stoma and will be able to maybe put your mums fears of this to rest. Sending hugs. Xx