Newly diagnosed

Hi guyfly and welcome to the online community and I am sorry to see you here and having to reach out to us from across the pond.

I would think that you should have a frank decision with your medical team and discuss all your options before making any decision about holding off on treatment. When speaking to your medical team, and you should have someone with you as an extra pair of ears, ask them to explain everything clearly for you and explain the options available to you and why he won't consider anything else, if you don't understand something just ask for it to be repeated but in a simplified form.

Macmillans have a booklet you can download called Understanding Anal Cancer and I hope this will furnish you with some information that might make things a bit clearer for you.

The reason for taking someone with you to Appointments is to act as your eyes and ears and to take notes about everything that has been said this helps to avoid confusion when you get home and try and remember everything that has been said, you should also prepare a list of questions you want to ask and give a copy to your companion to enable them to write down the answers against the questions (don't forget to take a few pens with you)

Your scan should give a better picture of the stage you are at.

This also maybe of interest to you American Cancer Society leaflet

Once you know more about your treatment plan come back to us and give us more details and the members should be able to fill in any blanks for you.

Good luck on Monday.

Ian

By clicking on the green text above will open up a new pages for you. To download the booklet Understanding Anal Cancer you will need to set up a new account on be.macmillan and you should use the same email address and password as you've used to log in here (not your username).

Hi Guyfly, Sorry you have found yourself here, but take comfort in knowing treatment works! I am from USA also and was diagnosed with T2 in Aug 2012! I am coming up on 6 yrs cancer FREE  

I too was diagnosed thinking I had hemorrhoids! I was shocked as well and took my sister with me on my 1st oncology visit to take notes! They explained the cancer and treatment plan and I started treatment 2 weeks after diagnosis! 

I did have a pet scan before treatment which came back positive! The treatment here in the US at the time I was treated, was 2 rounds chemotherapy drip week 1 and 3 for 7 days with fanny pack and 28 rounds of radiation! It goes by quickly and I had no real side affects from Chemo, except ulcers on my tongue! I went to my family physician to have them culturized and they were fine after a few days! First 2 weeks of radiation is ok then it gets harder, but your oncologist will prescribe pain meds and you'll get a lot of good tips on creams to use on this site! 

Please reconsider delaying treatment! I'm sure once you get your scan results back, you'll feel more confident! Since your in US, feel free to contact me at anytime, but keep Sharing on this site! It really helped me, because everyone is either going through treatment or on the other side! A lot of caring compassionate informative people to help you through!

I did friend request you and please reach out if you need to talk! 

Hi guys thank you so much.  I will get my scan tomorrow and meet with the Radiologist on Wed this week too so take it from there.  Let you know how that goes.  I just was disappointed when the insurance denied my appt to Moffit.  I guess the treatment is pretty standard except they are putting me in hospital week 1 and 3 for the chemo which does seem odd and I do not want to do.  Thanks again...updtates to come.

Hi guyfly I was the same T2 and treatment was chemo radiation as an inpatient week 1 and 5 

I only live 10 mins away so asked the Onc why I was staying in he pretty much said this was the norm ! 

Nearly 3 years later all is well apart from sore bottom which I can’t seem to control ?

ask away we are here to help :-) 

Amanda xx

Oh wow, so good to hear from you and congratulations! So I guess it's not that unusual to have to stay in hospital for the chemo? Did you also get Mitomycin and 5-FU? 

Hi guyfly

Sorry you find yourself here however, its a great forum full of people at different stages in their cancer journeys and lots of positive stories.

Good luck with your scans this week you will soon have all information about your cancer staging, treatment, side effects etc.

As you’re probably gathering, anal cancer is a rare skin cancer and sadly, is often misdiagnosed as haemmorrids. The same happened to me last year. I’d be suffering with what I thought was an external haemorrhoid for about 6 months. I saw my GP who also confirmed it was a haemorrhoid and as I didn’t have any other symptoms, wasn’t to concerned. After getting an infection and ending up in emergency surgery, this is when the the mass was found. Anyway fast forward, I did the treatment and was told in Sept 2018 that my tumour had gone, YAY!. I’m now 12 months clear/NED and crossing everything that I stay that way.

The treatment for anal cancer is pretty standard. The chemo-radiation is very effective, curative and is done to avoid surgery. For some people with small tumors found early, they can be removed prior to chemo-radiation but for most of us this doesn’t happen. Anal tumors tend to grown in/around the sphincter muscles so the treatment doesn’t damage the muscles as much as surgery would.

The treatment is short and sharp. The side effects are very individual, not particularly nice, but manageable and its over quickly. Treatment seems to differ between hospitals/countries. I had one round of IV ‘Mitomycin' then took oral chemo (Capecitabine) every day for the duration of the radiotherapy (5.5 weeks). However, I am hearing about people being admitted to hospital for chemo more and more often. Maybe ask your consultant if oral chemo is a possibility.

Someone has kindly given you the Macmillan Anal Cancer Guide which I hope you find useful. There is also a function called ‘Ask an Expert’ at the top of this page that you can use to contact an anal cancer professional directly with any questions. In addition, have you heard of the HPV & Anal Cancer Foundation? they are a charity based in the U.S. and have an office in London. They offer a peer support programme where you an be connected with an anal cancer survivor who can provide you with 1:1 support throughout your treatment and beyond. I attach the link should you wish to contact them.

https://www.analcancerfoundation.org/find-support/patient-support/connect-with-a-peer/

Again, all the best for your scan and appointment this week. Let us know how you get on and feel free to ask any questions at any time. We are here to help you every step of the way.

Sarah x

Hi guyfly some stay in some take home oral chemo must just be down to the hospital or oncologist choice ?? 

But mine was the same combination as you and week 1 and 5

week 1 easy week 5 I stopped driving half way through the week was getting very uncomfortable ! I found the chemo quiet easy hair thinned a bit but that’s all. Itch was controlled with Piriton and sickness tablets were available.

I shared with another lady in week 1 but week 5 I had a room to myself. I used to walk up and down the corridor talking to the others. Sometimes it was quite sad ️ 

goes quickly hope they don’t take to king in getting you started xx

I got my appt at Moffit Cancer center but what a disappointment they were cold and clinical and just said they would do the same but outpatient with a pump, had no idea why I had to stay in the Hospital so I'm thinking it's probably because they can make more money from my insurance...am I getting cynical?  Cancer is big business in the US anyway.  

I was supposed to start treatment today but My. Radiologist forgot to submit approval to my insurance for a pet scan after two weeks!  So, now have to wait again and get scheduled later anyway.  I had to call and get some anti anxiety meds today as I just have taken about all I can and despite so many requests for some help...there just is none.  How do you let things go and try and be positive when so many don't do what they are being paid a lot of money to do?

Update: So glad I found this site in the beginning and thank you all for the support.  All Finished with treatment and wound up NOT having to stay in the hospital for the Chemo, they let me use the pump at home.  All went well minimal side affects from the Chemo.  It was hard getting through the Radiation though and man, the 2-3 weeks after treatment...I don't know how I got through it but I did and 5 weeks post treatment now and finally able to resume a bit of normal life and independence.  Now to start trying to regain my weight (lost 20 lbs) and strength and peace of mind. I've learned how amazingly resilient our bodies are and all we have is the present moment to live being present in it.

To any of you out there reading this that are beginning, hang in there, things get better every day and there is an amazing group of survivors to help.  

Hi guyfly,

I’m so pleased you’re ‘through the other side’ & doing well. The 11 days post treatment were by far the worst for me too!! The weight will come back (unfortunately mine did anyway!) & with a little time & patience your strength & stamina will return also, just don’t do too much too soon, be kind to yourself you’ve been through a lot. 

Lovely of you to give us an update, congratulations & take care.

Nicola