New to the group

Hi Bec really sorry you have found yourself here, once I had my Pet Ct scan, I had a biopsy, where I was told it was squamous cell carcinoma, and also was told I was Locally advanced stage 4 N1 M0, I ended up with a stoma as tumour was stopping me from going to the toilet, best thing I did as it can be quite painful when going to the toilet when going through the radiotherapy, sorry don’t mean to scare you. 

So they have told you,  you will be having chemoradiotherapy, before you start you will go and be set up on the machine where they mark you up for where the radiotherapy will go, so I was given very small tattoos each side of my thighs and one in the middle of my pubic bone, when you start your treatment day 1 you may have a chemo infusion, then straight after have you radiotherapy, then every day you  will have chemo tablets am and pm everyday Monday to Friday, plus your radiotherapy everyday weekends off, iv heard of others are slightly different in the way the have their treatment but that is what I had.

im 4 months post treatment, my first MRI I had 3 months post treatment where I was told the tumour has shrunk considerably, however I have some lymph nodes that are still enlarged but my treatment is still working so I’m hoping that my next MRI which is 22nd of September will be an all clear.

i definitely feel so much better my cancer pain has subsided considerably so I’m hoping everything is going in the right direction.

my advice is remain positive and strong, take one day at a time if you need to rest then rest, if  you are in Pain tell the therapy team I’m on oramorph and it’s been a god send, if you want to know anything else please do ask.

take care 

Laura x x

Hi Laura, thanks for your reply that clears a few things up for me , just want to get started with the treatment  the waiting not knowing what going to happen is the worst , it’s been really helpful reading some of the other post I now have an idea what side effects to expect from the treatment 

take care

Hello Bex1969 I would like to welcome you to this lovely group full of lovely people who ideally don’t want to be here. Once you have your PET scan they can decide a start date for you which is scary to begin with but you know you are on the road to beating this thing. I had first day chemo infusion and then oral chemo tablets with Mon to Fri radiotherapy. I am 14 months post treatment and life is great. My first appointment with my oncologist consisted of giving me a long list of side effects you can expect. I didn’t get most of them but what I did get didn’t appear all at once and you deal with them as they come. My piece of advice which I couldn’t have done without was a portable sitz bath you put over your loo and fill with warm water to help if you suffer from painful urination and passing stools which can be quite painful during and after treatment. Get your medical team nurses to advise on what you can do as well as lots of tips on here. Ask your nurses about preparing your skin down there as it’s worth starting to use a good moisturiser getting your skin in top condition. I did a lot of research on creams and used a get called StrataXRT which suited me but very expensive. Others on here did well on other creams. Once you start your treatment it is surprising how quickly time flies. Wishing you well with your scan

Hi Jaycee12

tthanks for your reply, feeling a little more positive now, I know it’s going to be rough , but I’m a bit more prepared now after reading some of the post on here, how long after your pet scan did you start treatment?

Hi before I had my PET scan I had some surgery to remove the tumour but unfortunately they were unable to get a big enough margin and found cancer cells. (Imagine an egg yolk and the white of the egg is the margin and yolk the tumour). The PET scan followed and then I think it was about four weeks later I started chemo radiotherapy. Each hospital is different but in between the waiting I had the tattoos as Dizzy mentioned. You can ask anything on here so don’t feel alone.

Hi Bex, I didnt start my treatment till 2 1/2 months later, because I had to have a colostomy beginning of December , which was when I was supposed to be starting my treatment. So I had to heal before treatment 

take care 

Laura

Hi Bex1969,

As you can already see from the responses to your post we have a great, friendly, supportive group here. I’d just like to add a warm welcome to our little corner of the Macmillan online community although I’m really sorry to hear of your diagnosis. Personally I was diagnosed back in February 2018 with squamous cell carcinoma anal cancer & I’m currently a little over 4 years post treatment, cancer free & doing well, if you click on my username you can read my journey in a little more detail. 

You are in the scariest place right now, freshly diagnosed & unsure of what comes next. You will feel a little more settled once you have a treatment plan in place & you know exactly what’s happening. As Laura has mentioned you’ll have a planning scan where lots of measurements are taken while you’re in the scanner & you will most likely get tiny pinprick tattoos which make it much faster & easier to line you up on the radiotherapy machine for each treatment. Generally in the UK the chemo side of the treatment is a very short infusion of mitomycin on day one of treatment (mine lasted literally about 3 minutes) & capecitabine tablets twice a day Monday-Friday, the side effects from oral chemo are nowhere near as severe as the kind you get by regular infusions! I had literally no side effects other than my hair thinning a little (nobody else noticed) & I had some fatigue but I think that was a mixture of both treatments. The radiotherapy is literally 10 minutes on the machine & painless (again Monday-Friday) the side effects from the radiotherapy are mainly skin reactions & sometimes bowel disturbances, although I didn’t get the bowel disturbances my skin did become inflamed (similar to sunburn) but your treating team will have as whole load of lotions & potions that will help with this. Not everyone has the same reaction to the treatment & the skin reactions are cumulative, it happens very gradually so my advice would be just take it a day at a time. Regarding the fatigue mine was nothing a nana nap in the afternoon & an early night didn’t sort out. 

We’re always here when you need us, we’ve all been where you are now so we truly understand what you’re going through. Please don’t hesitate to ask if you have any questions no matter how personal they may seem, we’re a very open minded bunch & are all used to discussing bottoms, lady parts & toilet habits on a regular basis lol. 

Nicola