Anal Cancer - absolutely petrified

Hi Debh1

I am so sorry that you have received this diagnosis and totally sympathise and understand how you are feeling. I too was diagnosed with stage 3b anal cancer last March. I was 47, feeling well, no cancer history, no real symptoms, had never heard of anal cancer and was terrified.

You have come to the right place. As you probably know this is a rare cancer so it can be hard to connect with people who really understand. However, there are lots of people on this forum, at different stages in their cancer journey, that will be able to support you. You are NOT alone and we can help you. 

What I will firstly say is that the treatment for this cancer is very effective and curative. The treatment worked for me, I am now 12 months post treatment and cancer free. You will read lots of other positive stories on here. 

You are probably in the worse place right now. In limbo, trying to process the bomb shell of diagnosis, thinking all sorts and scared for what is to come. This is all completely normal and we’ve all been there. You have a treatment start date which is great and believe it or not, once treatment starts you will feel better. You will be totally focused on getting through your treatment and ticking off the days. The treatment is challenging but manageable. Its usually only 5.5 weeks and passes by very quickly. 

In the meantime, I would advise you connect with someone who is about to go through treatment at the same time. There are people on here who I’m sure will contact you. If not, I will find someone for you. I partnered with a lovely lady I met on here. We were staged differently but started treatment on the same day and texted each other every day through out treatment. It was a great help and support to share my experience with someone who was going through things at the same time.

There is also the HPV and Anal Cancer foundation based in the U.S. with an office in London. They have a peer support programme whereby they connect you with an anal cancer survivor who supports you throughout your treatment. I used this programme and together with the Macmillan forum, I found the support invaluable. This is why I am now a Community Champion for this site and a volunteer for the AC Foundation, I want to use my experience to help others.

Here’s the link to the AC Foundation. Drop them an email, it may take a couple of days for them to get back to you due to time differences. You will probably hear from someone called Laura Lazar. You will can also read my story on their website. 

https://www.analcancerfoundation.org/find-support/

Try not to Google. Its tempting and we’ve all done it but, in my experience it never ends well and sends your mind spiralling further.

I’m going to leave it there for now and I’m sure other people will message with support soon.

There is much we can tell you at the right time. We can advise you on how to prepare for treatment over the next two weeks. If you want this information now, just ask. I just don’t want to overload you when you’re head is probably all over the place already.

Of course come on here when ever you need to, ask anything, someone will always respond. 

I hope this helps for now. You’ve come to the right place, we will help you Deb.

Sarah x

Hi

As you will see above, we have a new member Debh1 who is due to start treatment in 2 weeks. You are staged differently but about to go through treatment at the same time. It might be worth you connecting so you can support each other through treatment. Obviously we’ll continue to support you on here, but having someone to talk to who’s going through things at a similar time is very supportive.

Sarah x

Hello Deb, 

so sorry you find yourself here! 

I too was diagnosed with T 4 anal carcinoma June 2918. 

I am now cancer free and loving life and feel better than I have in years!!!!! I am 52 years young. 

I had 5.5 weeks chemoradiotherapy and stoma surgery last year and in April 2019 had my stoma reversal. 

Theres life after cancer, it is scary and tbh totally shit! It sucks, but plz plz keep strong and do as your doctors tell you. The treatment is fierce but it works!!! 

Please don’t hesitate to message and ask any questions as I found the support in this site incredible as you can’t akways discuss your darkest fears with your nearest and dearest. 

Keep strong and positive, this is a journey and you must get through it. 

Much love 

Lorna xx 

Thank you so so much for your messages.  This is the first time I've not felt alone.  I've googled a lot and scared myself a lot (I already suffer with terrible anxiety) - so I definitely won't be doing that anymore.

I cried all the way through your messages and I can't tell you how it feels to know there are others like me and help is there.

Thank you so much

x

Hi Deb

welcome and sorry  to hear you have  found yourself on this journey! 

But I must also add, you will find this site a godsend, I know I did! I like was diagnosed last May with a T4 tumour aged 47, I felt like my world had fell apart! The initial part is the scariest, once you start treatment it’s amazing where the strength comes from to get through. It is tough and everyone differs with side effects, however I am a proper wimp and I got through. There will always be answers to your questions on here, so never be afraid to ask, we all have and still do! You’ve already been given some great advice. 

Hopefully your feeling a little bit less scared now!

Take care 

Speak soon

Crystal x x

Hi Deb,

I’m so sorry you find yourself going through this awful time. Welcome doesn’t really seem like the right word but believe me you really are in the best possible place for support & advice from those of us that have been exactly where you are right now! 

As with many of the others here my diagnosis came out of the blue, no real symptoms other than an external polyp that suddenly bled a couple of times & changed in appearance. Like yourself I’ve no family history of any cancers at all & thought my world had fell apart, even wondered if I’d see mine or either of my daughters next birthdays etc., rest assured after talking to others these thoughts are not unusual, it’s that dreaded ‘C’ word that sends you into a tailspin! Fast forward 12 months & following surgery March 2018 & a course of chemo-radiotherapy last summer I am disease free. You’ll find people here that have been diagnosed at all different stages & like me many have had great results after having the chemo-radiotherapy so, forgive the pun, but sit tight & trust in the treatment & the people treating you. 

Sarah & myself went through treatment last year together (different hospitals) & totally agree with what she says about trying to find someone on here that’s going to be going through treatment around the same time as you, that support really is invaluable & if you can’t then we’re all here to support you also as we’ve all been there.

Please remember you’re no longer alone in this we’re all only a message away. 

Nicola x

HI Deb

I am 49, and have just been diagnosed with anal cancer, as well and also don't have a family history of it or any other cancers, so it has also come as a dreadful shock, as I was thinking it was a pro lapse or piles.

I am due to go and sign the all the forms on Wednesday and start treatment on Monday next week. I joined this group last week, as I also felt my world has fallen to bits and have had to cancel my dream holiday to America in September, this group has made me feel so much better and more relaxed about everything as the results all sound so positive. I have not been able to do anything since I found out and my life seems to be on hold.

I will let you know how I get on, on Monday and how I feel after my first treatment, I am going to Christies in Manchester, where are you being treated?

I just think its going to be a very rough three months and then will be back to being fairly normal again, I am hoping which is what I have read on here, the treatment is aggressive but works and all sounds positive.

Let me know how you get on, and I am sure we can fight this together.

Best Wishes

Macci xx

Hi Sarah

Thanks very much for your message, I have send Deb a message, you have been extremely comforting and really appreciate it. I start next Monday, so I will let you know how I get on and feel.

Best wishes

Macci x

Hi Deb,

I'm 3 weeks into my treatment.  My staging was T2 N1a M0.

I am desperately anxious by nature, really struggled at the beginnings with it and and just wanted to let you know that there is no need to be.

The best advice is to take one day at a time.

I was terrified about the treatment itself and doubted I would be able to cope. I just saw a very long road ahead and thought i had to put my life on hold for the entire trip

This is not true at all.

You can honestly right off the first 2 or 3 weeks ref any symptoms at all. The chemo will likely make you feel a bit fuzzy and tired. But that actually helps with my sleeping. You will have some urgency and visit the loo more often too  but that's it really

My symptoms this week are also pretty minor. Getting a little sore in the groin area. They have given me E45 cream for it. 

You get a lot of support during your treatment from the hospital staff too.

I still suffer with anxiety  it's my nature as I said but I wish I had known I could go this far into the treatment symptom free. It would have helped. 

I hope this helps your piece of mind too.

Cheers 

Ian x

Hi Ian,

Can I just say after reading your previous posts where it was really obvious your anxiety was through the roof how wonderful it is that you’re here giving encouragement to others & even more so that you’re coping so well with your treatment. I know you’ve a couple of weeks to go yet but keep up the fantastic work & all the very best of luck with the rest of your treatment. Go you!!!!

Nicola