Worried - any advice?

Hi  ,

Firstly welcome to the Macmillan online community although I’m really sorry that you’ve had the need to find us. 

The most common kind of anal cancer is squamous cell carcinoma which my oncologist told me is more akin to a skin cancer. The standard treatment for anal cancer is chemoradiotherapy, here in the UK this usually consists of short daily radiotherapy sessions over a 5.5 week period along with a mitomycin infusion day 1 of treatment & oral capecitabine twice a day thereafter for the duration of the treatment. 

It’s great that both your sigmoidoscopy & bowel screening were clear. Once your CT & MRI results are in you’ll hopefully get a clearer picture  including staging & a treatment plan. 

The way you’re feeling right now is completely normal, we understand as we’ve all been where you are now so please if you have any questions don’t hesitate to ask. I’ll be thinking of you tomorrow & Thursday having your scans, wishing you good luck & sending lots of healing thoughts your way. 

Nicola 

Hi DP,

So sorry you're in a position to need the support of this group but so glad you've found us!

I don't think you're too early to start preparing yourself. It's great news that you're getting so many All Clears. No clue how it will all unfold, but I agree with Nicola that the standard 5 weeks of radiation with chemo at the start and finish are likely.

Keep us posted!

Hugs

Suz

Hello DP66

It is only natural you are all over the place, having a cancer diagnosis, no matter how small is shocking and most people are in a state of disbelief in the early days.  So I too am sorry to hear of your diagnosis but you have come to the right place for support and commiseration, (we have all been through it or are going through it too) as you start to go through treatment, and no, you aren't too early at all!

Radiotherapy plus chemo is very effective for this type of cancer and as Nicola says, the gold standard treatment for anal cancer.  Once you have your treatment plan in place then generally the shock is replaced by an eagerness to get the treatment over and done with and there are lots and lots of tips we can pass on.  Your cancer team sound really on the ball, so wishing you the best of luck with your scans, and you will normally hear a week later about the next step.  I won't flood you with information right now until you have your plan but we are all here if you just need to talk.  Just remember nothing is off-limits for discussion on here!

Irene xx

Hi there.

its completely natural to feel this way as I’m sure all of us here did too.  I found once I was diagnosed the colorectal team took over and once my treatment started I felt I was in safe hands.  Cancer is scary but you will be well looked after and after your treatment is finished you will hopefully be cancer free as I was.  I hope all goes well for you. X

Hi all, 

Firstly a big thank you to all who’ve replied - you’ve helped me a lot and it’s appreciated. 

I’ve had CT and MRI plus visit to Colo Rectal Surgeon yesterday. Fortunately the CT was all clear and didn’t show any spread - MRI results weren’t back but will be discussed in an MDT on Monday morning following which the CR team will call me. 

Apparently I’m in the 1% of cases where the Cancer isn’t presenting in the Rectal canal and is more at the Anal opening. 

Whilst treatment plan will depend on MRI Results it’s currently thought to be Chemo and Radio - probably as per the ‘Gold Standard’ mentioned in earlier comment. 

The team certainly do inspire confidence and I feel like Oor Wullie said that we are in safe hands - things have certainly moved fast  

We, and I say we, as this affects both me and my wife, are gradually getting our head around things - could be a lot worse diagnosis at this stage and I know others are going through a lot worse than me - thoughts are with everyone. I’m told 80%+ chance that treatment will work. 

My hospital has a Maggies Centre which we popped into - they were excellent and will provide a lot of help for both of us. 

Once again my thanks to you all for your support and kind words. 

Hi  , 

Firstly that’s great news about your CT results & that the MDT is on Monday you’ll have a clearer plan moving forward then. It’s great to hear that things are moving so quickly for you too, this is the way it happened when I received my diagnosis in February 2018 but as we all know the pandemic took its toll on the NHS & everything, including cancer diagnosis & treatments, have taken much longer than they would have prior to this. I’m also pleased that you have a good supportive team around you that you have confidence in, this is so, so important. 

The hospital I received my treatment at also had a Maggies Centre in the grounds, they’re wonderful places run by fabulous people, it was good sometimes just to call in for a coffee & a chat with people that truly understood the meaning of having a cancer diagnosis & as you know they’ll not only support yourself but family members too.

Hopefully by mid week next week you’ll know for certain what’ll be happening moving forwards. We’re always here if you need a listening ear or any hints or tips should you be getting chemo-radiotherapy. 

Nicola 

I'm finishing up week 2 of the standard treatment Nikki65 stated above. What in trying to find out is standard gy dosage for radiation. Does anyone know? Thanks! Oh, also, what is a "round" of treatment mean?

No clue about the radiation dosage, but I assume a round of treatment to mean the standard 4-5 week course of radiation with chemo at the start and finish.

Hi all, have had results of MRI and MDT meeting to go with the CT.

Looks like I’ve been lucky. Neither CT nor MRI could find any trace of cancer in me which I’m so happy about. However as the external lump had malignancy surrounded by benign and a small benign bit needed to be left behind due to its proximity to the Anus they still want to give me Radiotherapy. 

My feeling though is if they’ve removed all the malignant area and there’s no malignancy in me do I really need the treatment? I know the Drs know best and erring on the side of caution is always best so I I’ll be guided by them. 

I have outpatients on 16/3 when I will discuss further.

Once again my thanks to all who’ve helped me - my thoughts and caring are with all who are coping with their own challenges that are far tougher than mine have turned out to be. 

I can't give advice on this I'm afraid as my tumour was large enough to definitely need the chemo/radiotherapy route.  Personally I don't know of anyone on the forum who hasn't had the Gold Standard, but I could be wrong.

In any case, I am so happy to hear your news, it all looks very very positive.

Irene x