Newly diagnosed

Hi JIan,

I am sorry to hear of your diagnosis. You are amongst friends here who understand where you are at... are you sure your treatment is going to be 6 months? The standard treatment for this type of cancer tends to be around 6 weeks chemoradiation, which is Monday to Friday, with weekends off. I start my own treatment on the 26th May. 

As for side effects, everyone is different and responds differently to the treatment. From what I have read, the first couple of weeks are not so bad, but it's a cumulative effect that builds over time and the peak of it generally kicks in around 2 weeks after the treatment ends. From there on, the healing process begins. 

There is lots of helpful advice to be found in this forum and you are not alone. I wish you all the best going forward. Just be gentle with yourself and take things as they come. It's definitely a very overwhelming time.

Jenna xx

Hello Jlan

A warm welcome to our little corner of the forum although I am so sorry to hear of your diagnosis.  I am so relieved that you were eventually investigated fully, and take heart that the chemo/radiotherapy has a very high success rate.

It is tough, but doable, and most importantly, please remember the side effects don't all come at once.  It is probably around the end of the third week that you will begin to notice a feeling like sunburn in the area being treated, but the six weeks passes very quickly - most of us marked off the days on a calendar. I had fatigue whilst having treatment but I just took to my bed and had lots of rest; others lined up lots of television and books.  And a few did carry on working.  I certainly wouldn't say I felt much worse, just overwhelming relief that at last I was being treated and it would be over in a few short weeks.  The last week of treatment and the next couple of weeks can be challenging but we have lots of tips and coping strategies to share.

There was a lady on here some time ago who was also on Guernsey and was treated in Southampton. I think the hospital arranged or helped find accommodation nearby for the duration of the treatment.  I will see if I can find a link to find out exactly how she got over that problem.

Jlan, please always remember, you are never alone on here.  Everyone on this forum has either been through or is going through the same and have huge empathy with newcomers who are going through this really stressful time when life is like a rollercoaster with numerous appointments and scans.  There is nearly always someone around to talk or indeed if you just need to let off steam.

Big hug

Irene xx

Oh Jlan,

Welcome to the forum, it sounds as though you have had a really tough time.

I am not medically qualified at all, but in my experience six months chemoradiation does sound quite a lot - the standard for anal cancer as far as I know from this forum is usually 28 days with weekends off. I realise this might be different since you live quite a long way from your treatment centre, but please don't panic. The chemo used is not the same as for breast cancer, and although it was good of your friend to give you the name of someone to talk to, they are very different types of cancer and so have very different treatments.

However, chemoradiation for anal cancer is extremely effective. It can be quite harsh on your body, but we all react differently, and the staff who treat you are pretty clued up on helping with whatever comes along. Some people here were able to carry on working, some had some time off. Most of us felt quite tired especially by the end of the treatment, but we were all able to cope, and you will too. You might be able to go to the gym, you might feel able to work but really you have to just take each day as it comes, keep ticking the days off on the calendar and you will get there.

Stick with this forum, I found it more helpful than anything else because everyone here has been through it. xxxx

Hi 

I am sure it’s 6 weeks of treatment and not 6 months.

I had my treatment at Southampton and the whole team there are fantastic and I was seen every week by a Dr and could discuss all my concerns.  We are all different but I carried on as normal working and riding my horse for the first 4/5 weeks of treatment and it was the last week and the two after my treatment ended that were the worst for pain and fatigue, so you just have to take the morphine and go to bed and be patient.  But be confident and optimistic again, the end of the treatment is harsh but the results are good and life does return to normal. Make sure you buy a sitz bath it really gives relief. Xx

Hi Jlan,

Im so sorry about your diagnosis. 

It’s a lot to take in and it sounds like you have been given information which has only served to frighten and overwhelm you so it’s good that you have found this forum.  We have all been through or are going through treatment for anal cancer so can answer any questions based on our own lived experience.

As the others have said, the standard chemo radiation is usually 28 days with weekends off both chemo and radiotherapy. I was able to function quite well until the last week and the 2 weeks post treatment and even then managed to get out for fresh air every day. Fatigue was a big issue for me after the treatment and I fell asleep most afternoons but this did improve. 
Some forum members worked part way through and someone recently worked all the way through.

As Mrs Vanilla said, different cancers have different treatment pathways and medications so although your friend was trying to be helpful and alleviate your anxiety it has had the opposite effect. 

Having to travel away from home for treatment is a hard one and I’m sure you will be booked into accommodation. Is there someone you can take with you? 

We are all here for you for any questions at all and for support. Xx

Thanks Jenna. I am very confused re the 6 month treatment as others are saying the same thing. The surgeon here who did the biopsy has told me twice I will need chemoradiation for 6 mths in cycles,  but I will definitely check this out as it doesn't sound right. Although 6 weeks will be more intense, I think it would be better to have it in a shorter period of time. Thanks for reaching out to me and I wish you all the best for the 26th. Xx

Thanks Irene. I am in that blindsided stage and not sure of next stage. If you do come across the link for the lady in Guernsey who had treatment, that would be great, as I really don't know how this will work / which Oncology team I will see. People in Guernsey with other types of cancer would normally have the chemo in Guernsey and the radiotherapy in Southampton so would deal with Guernsey Oncolgy. Such a mine field . Xx

Thankyou, I am starting to feel calmer with everyone's comments. It is reassuring to know it may be possible to work with flexibility depending in how I feel. Also if the treatment is 6 weeks rather than 6 months I wouldn't have to take so much time off. Xx

Hi JET1414, it is good to hear that you were treated well at Southampton and also that you managed to work and ride your horse for most of the time. I feel so much better and finding my fighting spirit again. Thanks for your comments. I will look into a sitz bath. Xx

Hi Jlan

Welcome to the forum. Are you sure it's 6 months, as far as i know the standard is 28 sessions which is 5.5 weeks. I had the standard treatment and finished November 6th last year. I have seen people on here who have worked through the treatment. We all react and cope differently, personally I didn't work but more for practical reasons in that the hospital was a 2 hour round trip plus treatment time in the opposite direction to work plus have to be some perks to this . I think the doctors kind of tell you worst case scenario, mine told me I would be exhausted but I wasn't. You are not broken or alone you have everyone on this forum who are either going through it or out the other side, we are here for you however you need. Sending hugs. Xx