Coming to terms with diagnosis

Hi Bumchum66 and welcome to the group. I’m sorry to hear your news and that you’re in such pain and discomfort. The symptoms you’re describing will be very familiar to members of our group. We’re all at different stages of diagnosis, treatment and post-treatment. 
My tumour had ulcerated too and before I had treatment I was struggling to walk. I don’t know if you’re taking pain killers but I would request a telephone appointment with your treating team or call one of the colo-rectal nurses at your treating hospital for advice. You can take regular over the counter pain killers but you may need something stronger. For example, slow release morphine.   The itching is terrible isn’t it, I remember it well. Members of this group have recommended Piriton tablets. These are anti-histamines and can be bought over the counter. Please check with the pharmacist for any interaction with any other medication you may be taking. Otherwise, cool baths helped me.    As you are going to the toilet so much I would again ask your treating hospital for advice, I was prescribed Loperamide which cut down the toilet trips. Also, try to eat a bland diet, don’t overdo the fruit and fibre. I had to stop drinking coffee as it made me go even more. I’m back drinking it now though.  Another tip is to buy a sits bath which sits in the top of the toilet and you go over the water which really eases the pain. 
One good thing is that the radiotherapy does shrink the tumour quite rapidly.  You will have lots more questions along the way so please don’t hesitate to ask, someone will always be around to answer them. Also no question is too personal! 
I hope you receive a start date for treatment very soon. Bev. 

Hi Bumchum66,

I too would like to offer you a warm welcome to our little corner of the online community although I’m sorry that you’ve had the need to find us & like Bev I’m so sorry you find yourself in such a place suffering such discomfort! 

Bev has also given you some great advice all of which I echo I would just like to add though that it’s not uncommon for the colorectal Dr’s to hand you straight over to oncology once you’ve been staged if a local resection is not possible, this surgery is generally only possible if the disease is caught at very early stages, at my time of diagnosis I was told that only 1 in 600 cases of anal cancer is viable for surgical removal prior to any other treatment. Especially having just received such a diagnosis I can completely understand why you feel abandoned by them though. Also the chemoradiotherapy we receive generally as first line treatment is a pretty effective treatment & hopefully once started you’ll find your tumour shrinks quickly & you’ll be more comfortable. 

Please, again as Bev has already mentioned, chase up some more effective pain relief though & do try the antihistamines for the itching. 

I hope you get your oncology appointment very soon & get a little more clarity from that appointment & a treatment plan is put in place. You will probably be bombarded with a lot of information at that first oncology appointment so if your hospital allows it’s always good to have someone with you, if not take a notepad & pen & jot stuff down. 

We’re here to support you when you need us to & have a lot of tips & advice on getting through treatment so please don’t hesitate to post here whenever you feel the need. 

Nicola 

Hi, sorry to hear about your diagnosis and that you’re in  pain and discomfort. 
I was diagnosed at stage 4. I’m on chemo and drug trial. I totally get what you’re saying when you feel like ‘they’ve washed their hands of you’ because you can’t be ‘cured’. That’s exactly how I felt. Looking back I think they were frustrated by the situation as they just want to help people. I also feel they need to manage people’s expectations as everyone reactions differently to treatment and no two scenarios are exactly the same. It’s a bit like they are reading from a script.

I’m an optimistic person but they’ve really kept me in a place where I need to take one day at a time. Things are going well and my anal cancer has ‘disappeared’ still working on the cancer in my liver. Don’t give up, just take one day at a time as frustrating as that can be.
I hope things go well with your oncologist. 
best wishes, Zoe

Hi,

I have had a diagnosis of T4 cancer, right on the transition zone between colo-rectal and anal. The pain is poleaxing, isn't it. And my tumour keeps liking to pop out...

I saw the oncologist on Wednesday. I will have 4 or 5 weeks of radiochemotherapy but even though it will be grim, I am desperate to get started When I told her that at its worst I can't speak for pain, she prescribed oral morphine. Don't be brave - let them know. If it works for you then it helps; normal painkillers don't touch it. I don't take it every day, just when I need it. I've learned the hard way to take a small dose with the warning signs, but I could take 4 doses a day.

I also have had a stoma (hopefully temporary) to keep the area clean ready for treatment. I was pooing a lot and it always caused a prolapse of the tumour. The vaginal wall is perforated so I get a lot of discharge from the front passage too. The stoma is hard to get used to, but is definitely the right thing. 

I come and read this forum and find it so useful and supportive. You really are not alone, and you shouldn't have to bear the pain all the time. My pain and discomfort is always there - but the hours of lying down and trying to breathe through it are far fewer now. 

My understanding is that anal cancer responds well to treatment, and that not having surgery is a good thing if it can be avoided. It sounds like your team haven't explained it as well as mine did.

I wish you all the best - see you on the other side!

Lesley