Newly diagnosed anal cancer

Good afternoon Wishes 

I welcome you to the group and oh my, what an awful journey you have been through. There are some members here that had the same problem of the doctors mistakenly diagnosing symptoms for haemorrhoids. Like you I had no visible lump but had some spotting of blood occasionally and unbearable itching to the point I used suppositories for piles thinking it was just that. This stopped for a short period and then the bleeding came back. My visit to the doctor was more professional than yours as she did examine me and said straight away she wasn’t happy and didn’t suspect haemorrhoids so referred me straight away to the hospital. This was nearly five years ago and I still remember the anguish I felt with the process of having the sigmoidoscopy then the biopsy etc. I was sent to Addenbrookes as my local hospital didn’t treat anal cancer. I had a super specialist nurse who said she was going to support me all the way but the next appointment was disgraceful when I had to get the little dot tattoos required on each hip and pubic bone ready for radiotherapy. I won’t go through it all but the main nurse and her two colleagues treated me disgustingly and I could see how the main one in charge was teaching her two upstarts how to treat patients. I relayed my experience to my specialist nurse who was also very angry and unaware of how patients were being treated by this one department. She told me to report it to PALS as she didn’t want Addenbrookes hospital to be seen as poor for cancer care seeing as they prided themselves as being one of the top hospitals in the country. So my advice is to speak to PALS which you should have in your hospital. I will add that the rest of my experience was good and my oncologist was good at listening to my concerns. Reading from your post you have already gone through the trials of cancer and it’s very understandable how you are feeling. Personally I think you have gone through a very bad experience. I can only tell you my experience being diagnosed as stage two with no lymph nodes affected which was the full force anyway of six weeks of chemoradiotherapy. The first day was intravenous chemo then followed daily chemo tablets morning and evening with radiotherapy Monday to Friday and weekends off. I know some hospitals do this differently so don’t take my experience as what you will have. My advice is when you have your first visit with your oncologist is to take a friend with you so when you ask questions you will have someone there who can support you and remember what was said. My first visit was tough as they give you all the side effects that can happen and some lovely members on here put me at ease and said that they don’t come all at once and some don’t get many at all. You will get some great tips on here and you don’t have to feel alone as we are here to support you and answer questions you might have if we can. Get a sitz bath is my first piece of advice. Let us know how you get on.

Julie x

Hi there Wishes ,

Firstly a warm welcome from me to the MacMillan Online Community although I’m so sorry to hear of your recent diagnosis & the awful experience you’ve had to get to this point! 

Unfortunately it’s not at all uncommon for anal cancer to go misdiagnosed for some time with people being treated for haemorrhoids or fissures before being referred to a colorectal consultant but you’ve also had to deal with the issues of your referral being forwarded to the wrong department not once but twice! I know it’s something you don’t really have the headspace for at the moment but I would seriously consider putting a complaint in. 

The majority of us here have been through chemoradiotherapy, it’s not a walk in the park but it’s very effective & lots of us here are testament to that. 

The waiting around for appointments etc., is so difficult when all you want to do is get on with treatment & rid yourself of this disease but you’ll know that already, hopefully once you’ve seen your oncologist things will start to move more swiftly.

Remember we’re here to help support you however we can.

Nicola 

Thankyou so much Julie for your reply it’s so reassuring and good to know I have support from someone who has gone through this. I will certainly contact PALS as I do think it is something that needs addressing. I hope you are doing well and I will let you know how I get on xx

Thankyou and I will definately put a complaint into them, I have already put a complaint into the doctors and had a reply from the Ombudsmen who have also said the hospital are partly to blame as they should have sent it internally to the right dept and not back to the doctors each time. I have my own business and have had to cancel work, the knock on effect from all this is really hard to bare too. I will let you know how I get on thankyou again x

Hello Wishes 

I am so sorry that you are dealing with cancer yet again in your life, and the utter rigmarole you had to go through to get an appointment at the hospital, it beggars belief.  I am glad that in spite of what you are going through that you are going to escalate this otherwise the issues you have faced, both at your GP practice and the hospital will never improve.  I mean, how much effort would it have taken to redirect your case within the same hospital?

I would think that things will move very quickly after you see your oncologist, and you really will feel more in control once treatment starts.  And during the radiotherapy the local lymph nodes are included, I had several lymph nodes affected and have had no trouble since (four years).  It is a tough course of treatment but doable and 'only' 28 days, I use only loosely as it may not seem like that at the time.  Most of us have side effects but it is important to remember that they don't all come at once, it is a very gradual thing starting somewhere around the third week of treatment.

And we are here to help and support however we can.  The members in this group really do know what it is like and have great empathy for others facing the same path.

Big hug Wishes

Irene xx

Thankyou Irene, this is very reassuring, I have today put a complaint into the hospital too so feel better for doing so x