Anal cancer

Hi Cococabanna - obviously it's up to you. The treatment itself I didn't find painful. Some people get a few weeks pain in passing urine/stools when treatment has finished, but my pain lasted less than a week. There are all sorts of tips re managing throughout, which I'm sure a lot of people on here will be along to tell you shortly. I was given the 'all clear' in October last year and I have a CT appointment this month, to see if I'm still okay.  I don't have a stoma and I also had 'it' in my lymph gland. Hope this helps. xx

PS - I'm 70 too!

Thankyou so much that has put a different perspective on it , So good to hear positive results , really pleased you had all clear I wish you well in the future thanks again 

Hello Cococabanna, I am sorry to hear of your diagnosis, but welcome to the forum. It's good that your consultant is on board with your thoughts, whatever you decide.  If you go the chemo and radiotherapy route there are lots of tips we can offer on here, but there are also a few members who had to have a stoma due to blockage and who have managed really well.  Your question is a really interesting one, if you had asked me a year ago when I had just finished treatment I may have said stoma.  However, a year down the line, things are much better, not perfect, and I don't think they ever will be but definitely issues that I can cope with.  You may find you will get really useful answers from the stoma help forum on how life is for them.  @nikki65, can you help me out here please, I have seen you directing people to a help group?  Btw I was also 70 on diagnosis, I think there are quite a few of us around!

Whatever you decide, please remember this forum is always here for help and support during your treatment and beyond.

Irene xx

PS I don't know why the tag isn't working, but I'm sure Nicola will read this, I'll check tomorrow!

Thanks so much Irene , this forum is great I’m sure I will use frequently during treatment , the support is fantastic many thanks 

Hi Cococobanna, welcome to the group, though it’s not one we wanted to join out of choice! I know how you are feeling right now just like most of us here before treatment it’s really a very frightening place to be. I would come here before my treatment and read all the posts about those suffering side effects and just didn’t know what to do. Regarding the stoma, is this something your treatment team have suggested for you? I know some here have had a stoma and it is somewhat true they don’t experience the discomfort when passing bowel movements. But we are all different and some here manage with some side effects and yes some may experience more. The side effects tend to not happen all at once and when I started treatment I had already just had surgery to remove a suspicious area but didn’t really have pain until around the 4/5th week. This was skin reaction from the radiotherapy. The first two weeks I had radiation cystitis but drank loads of water with cranberry which helped. For every symptom you are offered creams etc and pain relief. It is hard but doable and I am living a good life 22 months post treatment. I am at the gym twice a week, yoga once a week, go walking and swimming and had to slightly adjust my diet due to certain foods that now give me an upset stomach. I’m 68 years old. I found when treatment stopped the side effects were troublesome for about two weeks but then I didn’t need to do the hospital trip every day and would just laze around the house and garden and rest as much as possible. You also will have your treatment team there to give you advice all the way through. My wonderful specialist nurse said to me before my treatment started that she was there for me every inch of the way which made me cry. Also you have us to help support you too. Julie

HI Cococabana,

So sorry to hear that you've got this lousy cancer. I get your dilemma. I was (and still am) okay with getting a stoma if my situation and doctors recommend it. But each situation has pros and cons. Stomas for sure remove the misery of bowel movements during and after radiation. They are generally well tolderated, but do come with their own set of Things That Can Go Wrong, and removal of the anus also adds one more Thing.

Another Thing is that we just don't know. Some folks sail right through the treatment whilst marathon training and juggling jobs and young children, but most have some degree of pain. You just don't know where you're going to fall on the spectrum. I'm glad that I got through it and into remission without a stoma, but I still have occasional pain and it's occasionally pretty bad. I'd still be fine with getting one if something changed.

I won't sugarcoat it, it's no picnic. To make the best decision, read through this forum, stick around and ask questions, and ask your doctor to shoot straight with you about the pros and cons in your particular situation. 

I don't even know if we'd get the choice here in the states! The insurance companies decide everything, often in direct oppostion to what doctors want. 

You are in one of the hardest emotional places right now, with it all before you and all the decisions to make. Hold fast! Your consultant has the ball rolling and once treatment starts, you're in it and for what it's worth, not so much in your head. Use all your best calming and meditative practices. My heart is with you. Stick with us and we'll talk you through.

Hugs

Suz

Hi Cococabanna ,

Welcome to the Macmillan online community although I’m so sorry that you’ve had the need to find us.

Is this APR surgery you’re thinking of? If so I'm not sure how the APR surgery has been described to you but it’s definitely not the easy treatment option for this diagnosis. It’s major surgery & can have a pretty long, uncomfortable recovery time, it’s usually used as a last resort if the chemoradiotherapy doesn’t work or there’s a reoccurrence of the disease. 

I can completely understand your fear of entering into the chemoradiotherapy, I think we were all terrified at the prospect of suffering all of these awful side effects that you read of. I remember voicing my concerns about this to my oncologist who replied that you don’t hear from the people that go through without many issues as they don’t tend to need the support. That aside yes you do get s sore bottom etc., & yes it is uncomfortable for a couple of weeks towards the end & just after treatment has finished but it doesn’t last forever, just take it day by day, the side effects build gradually they don’t all appear at once & your treating team will offer remedies, creams & pain relief as & when it’s needed, just let them know of any discomfort you’re feeling. The radiotherapy will also be mapped so that it treats the lymph nodes that have been affected also. 

If you do suffer longer term bowel issues or unbearable pain when having bowel movements once you’ve healed from the treatment then there’s always still the option of having a stoma then & my oncologist said that more people should be made aware of this. 

Personally I’ll be 5 years post treatment this June & have recovered well, I’m hopefully looking at discharge when I have my clinic appointment in June. I’m back living my life & very thankful for my treating team & this treatment for giving me the chance of this. 

Nicola 

Hi Irene75359 ,

I usually post to the site from my mobile & for the last couple of months I’ve been unable to reply or tag people whilst connected to WiFi!! I have to turn of my WiFi on my phone & proceed on 4G if I want to do either! So I’m not sure if it’s just me or others have had issues too, nobody seems to have mentioned anything  so I presumed it was just me as I’d had a few other minor issues when I did the last update on my phone. I reported it to the technical team but there doesn’t seem to be any issues their end. 

Nicola 

Hi Cococabanna, 

Sorry you have found yourself here,

I was diagnosed with advanced Stage 4 N1 anal cancer in November 21, by December I was told I needed a stoma which I refused, however because of the 10 cm tumour that had grown it was stopping me from going to the toilet so I didn't really have a choice, as they said they would rather give me one now instead of having to have one when going through the middle of my  treatment, so I ended up with one,  first week of having It I was very emotional I hated it, I was frightened to look or touch it and they wouldn’t let me out of hospital until I’d learnt to look after it, I pulled my big girl knickers up and got on with it and went home 5 days later, yes I can have a reversal but im not sure I really want one now as before the cancer I’d always suffered with bowel problems not being able to go I don’t have that problem now and also reading some peoples stories about the pain years later, I don’t think I want to go through that, however I still get pain up my bum which I still take a couple of mls of oramorph every morning as it seems I get pain after releasing mucus which you get from having a stoma it must irritate it up there I don’t know why??  And also iv ended up with a parastomal hernia which I hate so im waiting on an appointment to see the colorectal surgeon to ask if I can have the hernia repaired, it is a big bulge around my stoma that in my mind is worse than having a stoma!!

. I sailed through my treatment really a couple of weeks in I was very itchy in the vagina area and took antihistamines which worked a treat, I bathed every morning in bath salts and used a barrier cream they gave me I also used e45 to wipe myself when going to the wee I had some skin that peeled in my groins but  wasn’t sore  at all, after my treatment I had one little sore on my bum area which they gave me some padded dressings for and I used my stoma powder to keep it dry and it was really itchy  so I took antihistamines for which stopped the itching and within a couple of  weeks it healed. 
I went back to work 6 weeks later i still felt a little fatigued and still do a year later but im much more back to myself and workout etc. 

I just wanted to  add 4 days in to my chemoradiotherapy I was rushed in to hospital with suspected heart attack, however it turned out to be the chemo tablets so I only ever had the radiotherapy in the end. 

my first 3 months  check up they said it had shrunk considerably, the next 3 months it had gone and I was in remission, iv just had my 6 month and still in remission and all clear. 

I think if I could of got away with not having a stoma I would been happier but it has definitely been the best thing for me at the time.

I’m sure  your oncologist will give you all the best outcomes for you, let us know what your outcome is and if you need any questions answered we are here for you 

take care 

Laura x x