I’m scared

Hi Linz17,

Firstly a warm welcome to the group that nobody wants to join! Seriously though I’m pleased you’ve found us. Anal cancer is still one of the less common cancers, although unfortunately it’s on the increase, it can be a lonely place when you’re first diagnosed but you’re no longer alone, there’s many of us here & we’ve all been where you are right now so what better place to get some support. 

Like many people with AC I see you’ve been misdiagnosed with haemorrhoids! I do wonder when Dr’s are going to wake up to AC! I was lucky & was seen by a very astute GP who immediately referred me to the lower colon team at my local hospital & I was diagnosed around 2-3 weeks later. I’m now a little over 2.5 yrs post treatment & free of cancer at present (NED). If you click on my username you can read a little about my journey there. 

You’re bound to have wobbly days, I know I had many! I think as soon as the ‘C’ word is mentioned we all automatically think ‘that’s it my number is up’ obviously it’s not the case but it’s natural when hearing this news that our minds go to worst case scenario. Hopefully things should move pretty quickly for you now you have a diagnosis & a treatment plan will soon be put in place for you. 

There’s many of us here that have all been staged differently & have had great success with treatment & hopefully a few others will be along to share their experiences & offer you some support soon. Don’t ever worry about asking questions here, however personal they may seem, I can guarantee we’ve all asked these questions ourselves. 

Just know we’re always here with tips, advice & bucket loads of support. 

Nicola

Hi Linz17 and welcome to the online community. I'm sorry to hear about your diagnosis, it is frightening isn't it. However, please be reassured that treatment for anal cancer does have a very good success rate. Please click on my user name to see details of my diagnosis and treatment, I am now 17 months post treatment and NED (no evidence of disease), this is what used to be called being in remission.  Personally, I found it a lot easier to cope with the news that I had cancer once I had a treatment plan in place and a start date for treatment. Unfortunately, It doesn't surprise me to hear you were initially diagnosed with haemorrhoids, a lot of people here have reported the same thing. Anyway, it's a good thing you're otherwise  fit and healthy, this will help when you are going through treatment.  As Nikki65 has said no question is too personal to ask on here. Someone will always be available to answer any queries. We're all here to support you whenever you need it. Bev 

Good morning to you both . Thank-you so much for replying and I must admit I did cry when I read both your replies ... not because they were bad or anything like that but relief I guess that other people have been in my exact position ...  and know exactly how I’m feeling . My husband , family and friends are amazing and I’ve got a fantastic support network . I have been told that I will have a stoma fitted to give my bum a rest and I don’t think I’m overly bothered about that ... I’m lucky enough to have a great friend who had bowel cancer last year and she has one ! She face timed us the other day to tell us all about it and to see if the kids had any questions!!! In fact if she was a sales rep I’d of bought one !!!!! Then I’ve another friend who has breast cancer she’s having chemo and we’ve spoke on the phone she’s just told me a bit about what to expect .. as I assumed I’d be bed ridden and in a mess .. but it sounds like that’s NOT the case !!! They have all told me the same thing though and that’s to KEEP POSITIVE!!!! I’m feeling great this morning and just about to go and muck my horses out . I’m sure once I have the treatment plan in place I’ll feel so much better . My friend did say this is the worst part and hopefully I’ll not have a day as bad again as when I got my diagnosis . How did you ladies feel during treatment ? I have been told it will be chemo and radio treatment just can’t wait to get started !! 
Thanks so much for your support it really means so much . Linzey X x x 

Good morning .. I’ve replied to both of you in 1in1500 reply box .. I’m not sure on how to tag names etc yet X x x 

Hi Linz17 thanks you so much for your reply, I'm so glad we've been able to help. Before diagnosis when I knew there was something seriously wrong and then the diagnosis itself was for me by far the worst part. Once you receive your treatment plan things will start moving and this does help.  It's excellent  that you have such good support from your friends and family and particularly someone you can talk to who has actually had a stoma. 

The standard  treatment for anal cancer is a combined short course of radiotherapy and chemotherapy.  Usually, there is 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. Radiotherapy is also daily from Monday-Friday. The sessions are quite short, usually about 10 minutes. As you will be having a stoma you will avoid most of the short term side effects of the radiotherapy. Most people find it difficult going to the toilet during treatment and afterwards for a while after due to pain in passing faeces and urine from the parts that have been radiated. You will avoid this having a stoma. Most people tend to have more side effects from the radiotherapy than the chemotherapy as the main treatment is the radiotherapy, the chemo is to enhance the effects of the radiotherapy.    The only side effect I had from the chemotherapy was feeing nauseous from day 2 to 7. There was no hair loss or thinning of the hair (although some people do report the latter).  I did lose my pubic hair from the radiotherapy but I wasn't bothered about that! It has  grown back now anyway. 

To tag someone in a post type the @ sign, then immediately after start typing the person's user name, then the user name should appear to the right, simply click on that and the person will be tagged in the post.   As you have said in your post it will help to stay positive, I found keeping as busy as I could really helped. Don't feel that you have to be positive all the time though, everyone  has their down days, this is only normal.  When you do have wobbly days make sure you talk to your friends and family and of course you can always come on here and we'll cheer you up !  Bev 

Linz17  Ps there are also lots of medications for any side effects, eg anti-nausea medications and so on so please do ask the nurses or radiotherapists at the hospital if you do have any side effects. Bev 

Bev ..... you’ve no idea how much better you’ve made me feel ... thank you soooo much ! I’m assuming you’ve resumed all your normal activity since ? I was worried I’d have to sell my horses if I was unable to ride ... but again it’s just having no idea what to expect . I’m glad you said not everyday is a great day .. I’ve felt down for a few days which isn’t really like me I think it’s just the reality of it all .. but I really couldn’t feel better today and especially reading what you’ve put . What will happen with the hemorrhoid type things do they shrink back with the treatment or are they removed ? I’m guessing a lot of people have the ‘hemorrhoids’ on the outside and a lump/growth on the inside ??? Did you change your diet at all? I have I must admit I didn’t drink any water at all and hardly ever ate fruit . So now it’s just fruit and veg chicken or fish tones n tones of water vitamins etc and I feel really great. When I told the nurse I’d instantly changed my diet I felt really deflated because she said it wouldn’t really make a difference... but I’m feeling that good and it has 100% helped me in going to the toilet I don’t need to dread it anymore yeah it’s not going to get rid of the cancer but in other ways it’s helping massively!! Thanks so much for your time andNikki65and bothering to help me .....you ladies are amazing  you’ve made such a difference  to me already X x x 

Hi Linz17 I'm so pleased I have made you feel better, it really is a truly awful place to be just after diagnosis. It's so far removed from your real life, I kept thinking, is this really happening to me? It does get better though and now sometimes I don't even think about it. So, is the anal cancer inside and you have haemorrhoids on the outside? If so, I would expect they would remove the haemorrhoids whilst you were having your stoma put in place, but your Oncologist will be able to confirm this.   I ate very healthily before my diagnosis but I was a bit over the top about my diet and I was quite underweight. When I was diagnosed I deliberately put a stone on. I feel better for putting on weight and have continued to eat healthily although during the radiotherapy I found I had to limit my intake of fruit and veg as it gave me diarrhoea. Some people go the other way and get constipated, it's trial and error.     I can't understand why the nurse would say cleaning up your diet wouldn't help, unless she meant it wouldn't get rid of the cancer.   The fitter and healthier you are before and during treatment the better.  Yes, I'm back to my usual walking and swimming (although no swimming at present with the lockdown).   I'm sure you will be able to ride your horses again, obviously not during and immediately after treatment but it will be something for you to look forward to when you're better!   It's totally normal to  dread treatment but it probably won't be as bad as you anticipate, I found it about 50% less bad than I was expecting Bev x

Hi again Linz17,

I’m so pleased you’re feeling in a better place today but as Bev has said don’t feel you shouldn't be having those wobbles if they come along it comes with the territory I’m afraid! 

I changed my diet immediately as a knee jerk reaction to my diagnosis & went completely clean, no processed food etc., the radiotherapy, with most people, irritates the bowel too & a bland/white diet is often advised to ease any diarrhoea experienced  although I swung completely the opposite way (I’ve never been the conventional one lol) so was eating veg like there was no tomorrow!  I also began taking live goats milk kefir, a good quality multivitamin/mineral supplement & vitamin D3 supplement, mainly to help with my immune system as I knew once on the chemo it’d be totally wiped out, I had to stop the kefir during treatment & for about 6 weeks after as it contains live bacteria & that’s never a great idea when you’ve no immunity even if they’re friendly bacteria! 

Regarding the internal & external parts of your tumour it should all just shrink away with the radiotherapy, I had an external polyp & an internal ulcer, both were part of the tumour apparently & both were removed surgically prior to treatment, had I not have been viable for surgery then the polyp I’m assuming would have disappeared with the radiotherapy as people that have had pretty large tumours have reported the feeling of them melting away during & after treatment. 

As previously mentioned you’ll feel much better once a treatment plan is in place & although I was scared before my treatment began I felt so much better once it was underway, fear of the unknown I suppose, it wasn’t half as bad as I was expecting either. The chemo side of the treatment with it being oral doesn’t tend to have the severe side effects that an infusion chemo would have & most people tolerate it well, the radiotherapy side does cause some skin reactions etc., but these are accumulative & you’ll be supplied with lotions & potions for this as & when needed by your team & as Bev has mentioned the radiotherapy sessions are pretty short, I sometimes felt it took longer undressing than I was on the table. I’m also back to doing everything I did prior to my diagnosis.

I’m pleased you have a good support system in place it really does help & remember we’re always here when you need us. 

Nicola

Hi Linzey,

Welcome to our group. I can't add much more to what Nikki and 1/500 have said. I'd just emphasise that, based on my own and others' experience, this time of post diagnosis - pre treatment was a time of gradual acceptance and a sense of being somewhat out of control. It's Ok to feel scared and it'll no doubt jump out on you from time to time. Once you have a treatment plan and actually start treatment with all the medical support around you, you'll feel more in control. The best advice I can offer is to stay focussed on the treatment and not the disease. All too easily said I know, sorry but be assured there are people on here to support you through this.

Just to give a little hope perhaps - I'm 8 years' post treatment.

I do hope that you get your treatment plan in place soon.

Best wishes,

James.