New diagnosis

Hi Sarah, welcome to the group & I’m so sorry that you lost your mum.  It seems to me like you’ve done all the right things but that you’ve not been given the treatment you deserve.  I think you’re describing an APR, or an abdominoperineal resection, that I also was offered after my diagnosis in July this year.  I’m a newbie who’s been on a steep learning curve!  I’m 68 & live in north London.

I decided against APR, & instead had chemoradiotherapy at UCLH.  My tumour was 6cm & had spread to local lymph nodes only.  Some of the decisions you’ll be making are difficult but you’re clearly used to doing your own research.

Good to hear that you’ve got support from friends & your sister.  There are some wise folk in this group who may have good advice for you.  Please don’t feel rushed into making life changing decisions about treatment until you feel ready.

Good luck with the scan next week, & happy new year to you & everyone in the group!

Toni

Hi Twigley  welcome to the group, I'm glad you've found us. I'm sorry you were fobbed off for 2 years with your symptoms, unfortunately this seems to be quite a common occurrence with this sort of cancer. At least now you have a diagnosis, although I would imagine that you will need the results of your CT, MRI and PET scans before the doctors offer you the options for treatment. All your results will be discussed at a Multi-Disciplinary Team meeting (MDT), this may be the meeting you refer to on 6th January and the professionals will consider your treatment options which will then be put to you. I suppose you will not be able to take someone in with you for your appointment where they will give you the scan results and outline treatment options due to the pandemic, if you have a face-to-face appointment that is. I think it's always best to have someone else there to absorb the information too as it's easy to forget things. I found writing down things at the appointment helped as you are bombarded with information. Before the appointment I would also note down any questions I wanted to ask so I didn't forget anything. The 'standard' treatment for anal cancer is a combination of chemotherapy and radiotherapy every day for 5.5 weeks excluding weekends. However, other options such as removal of the anus etc may be offered depending on the staging of the cancer. It is important to explore fully with the doctors the different options for you, then you can weigh up the risks/benefits and make an informed choice. I would say that having a colostomy bag isn't what anyone would choose but people who have had to have one do seem to get used to it and there are options such as irrigation to cut down on the need for bag changes. The colorectal nurses at the hospital are really helpful with advising as to issues like this. You should be assigned your own colorectal nurse who you can always telephone between appointments for advice as needed. Also, when you are presented with the treatment options, you don't have to make you mind up which one to choose right there and then, you can ask for time to consider what choice to make. Please come back on here anytime with any questions or concerns, we are here for you. I wish you all the best. Bev. 

Hi Toni and Bev,

                           thanks for your replies, it is good to know there are others out there, it is really helping. I had a good news call this morning from the nurse, the nodes on my liver are not cancerous, so that has made me and my sister relieved that it's not as bad as it could be. My friends are there for me and I'm going to get through this !!!    Thankyou so much for your advice, I really appreciate it. So let's hope 2021 is a new year with some good changes for everyone, sending love to you all.

Sarah

Hi there Sarah (Twigley),

Another welcome to the group, although I’m sorry that you have had the need to find us. Unfortunately as Bev had already said it’s all too common that anal cancers are still being misdiagnosed as piles etc., this sadly leads to many going undiagnosed until they’re staged much further on than if they’d been properly investigated in the beginning!! my GP was really on the ball & got me on the 2 week pathway as soon as I’d seen her although the colorectal registrar that saw me at that appointment diagnosed an external polyp & an internal ulcer & it was only when the consultant saw his report that it was hurried along for biopsy etc., & the rest is history. Thankfully I was picked up very early due to the GP’s & consultants vigilance! I can totally appreciate your frustrations!! 

You’ve been given some great advice already & it’s good that Toni8776 has replied to your post as it sounds as though she’s had a very similar experience in view of the advice around treatment. Make sure you’re aware of all of your options regarding treatments & don’t be afraid of asking lots of questions before you make any decisions, as Bev has mentioned jot them down in a notebook as they pop into your head as at your next couple of meetings with your Drs you’ll be bombarded with lots of information. There are many people in this group that have had all different stages of anal cancers treated with chemoradiotherapy & also a couple of people on here that have had the APR surgery with varying degrees of success. 

I’m so sorry to hear of your mums illness & her passing but I’m pleased you’ve found us on the Macmillan online community as between us all we’ll have walked the walk you’re about to embark on & have lots of helpful tips we’ve picked up along the way so please just ask if you have any questions. Just one other bit of advice, try & keep away from Dr Google, it’s a very scary place to go & not all the information out there is very reliable & most of what you’ll find tends to be worst case scenario. I’m pleased the results regarding your liver were good & I hope your next appointment brings more positive news. 

Nicola 

Hi Sarah, good to hear your great news about your nodes!  My family were fab during the months I was ill, my sister did all my shopping & my brother helped with any research I needed.  I’d always been independent &, tho I’m grateful to my sister, it’s been amazing to be doing my own shopping & cooking for the past month!

I was also very sore after a biopsy, it was several weeks before it stopped bleeding & hurting.  My palliative care nurse got me Instillagel (syringes) for cleaning up after each poo, you should be able to get them on repeat prescription.  The palliative care team have been totally supportive, I’d recommend you ask your GP to put you in touch with yours - it’s not just for end of life care, it’s for helping you with any symptoms & other cancer related problems.

Faecal incontinence is such a downer but I’m learning to work around it.  You’ll be glad you moved close to the loo!  I’m using flushable wet wipes to clean up, & I bought Tena Fix washable incontinence nickers on Amazon - here’s the link:

https://www.amazon.co.uk/gp/aw/d/B003OD1982?psc=1&ref=ppx_pop_mob_b_asin_title

Good luck & take care, Toni

Hi Twigley just wanted to say I’m pleased to hear your news about the liver nodes not being cancerous, that really is good news indeed. Once you have a treatment plan in place and a start date for treatment, you should feel a bit better, I know I did. Things will get moving very soon. Bev. 

Hi Sarah

Like the others I am sad you have had to find us and for the loss of your Mum. 

I am now 10 days post treatment- like many 5.5 weeks of Chemoradiotherapy. So I am hopefully through the worst now. The advice given by this sites champions is excellent and so supportive so keep coming back and asking questions. I too was very sore after the biopsies. I had 2 lots taken and going to the toilet was like passing razor blades! Excruciating!! 

Once you have the treatment plan I am sure we can all help in guidance to get you through the experience and will be able to answer your questions but bearing in mind we are all slightly different. Fingers crossed you get your treatment plan ASAP and it is not impacted by current Covid situation. 
Sending you loads of good wishes

Ruth

1. Oh my sweet lady. I feel like you are so much stronger than me! I was diagnosed with anal cancer in nov 2019, age 64 also.  I had chemo and radiation. I finished treatment early feb this year.  Doing well now.  Have follow up wed with colon doc for check. Good wishes to you.  Let us know how you're doing

Thank you darling for your kind message. It has been a horrible christmas with this hanging over me and my father gravely ill in Cumbria and me in London, he is a narcissist and asked me to cancel my treatment to come and look after him, honestly they are the pits, I'm glad I have studied the condition and found out about it. He has carers 4 times a day and a friend staying with him too.

 My doc at hospital said to expect an ARP operation so I have been looking it all up over the holidays and am in a state of shock, it is taking a lot of inner strenght to hold myself on an even course but what else can I do. 

I am hoping you got your dates a bit wrong and it took from nov 19 till feb 20, 3 months, to have your chemo and radiation therapy. As a lady further up the messages said, once I am set on a path, and know what the heck is going to happen it will be easier to plan day to day and when to expect to be able to do stuff again. I am hoping to have chemo radiation and lord knows what will happen to my anal sphincter and diverticular diseased colon but there are all sorts of anal cups and stoppers, washer outers and so forth I should be able to use to do my excretions some how.

Many thanks for your message, this group is a real help too.

Happy New Year, happy 2021, you are stronger than you think !

Which hospital are you under? The absolute experts in this field are St Marks in Harrow and best surgeon in the country Mr Ian Jenkins according to my niece who’s in the know. Perhaps a request to go there might be in order?? Worth a thought! 
Ruth