Newly diagnose

Hello Tiffy

I am so sorry to hear of your diagnosis, but you have come to the right place to talk about your tumour.  We talk about absolutely everything on here without embarrassment and safely here in the community.

It certainly isn't silly not wanting to tell people.  It is entirely up to you who and what you tell people and if you don't want to share information you don't have to.  It was strange, but I found the less I knew people the more they wanted to know and I just didn't divulge what I didn't want to.  Anal cancer comes under GI cancer (gastrointestinal) which is all you need to say if you really have to.  Your health is your own private business.

The standard treatment is 28 days combined chemo/radiotherapy.  But before I totally bewilder you with lots of detail, would you mind confirming that you have had an actual anal cancer diagnosis?  Treatment can vary widely depending on the cancer, so knowing that would be really helpful.

Irene xx 

Hello Irene, thank you for your reply. Yes I have had it confirmed. The surgeon said it’s a rare tumour 0.02%. He said they would do chemo for 1 month ( 2 sessions) radio for 1 month ( 5 sessions a week) then back to chemo. 

Thank  you for your advice about telling people where it is, I just didn’t know what to say and it seems to be a conversation stopper. 

Hello Tiffy

Thank you for clearing that up - I am not an expert on the various protocols for anal cancer treatment but many of us had 28 days of chemo/radiotherapy, sometimes the the chemo is given a week before the radiotherapy and others had chemo tablets which are taken alongside the radiotherapy.

Sometimes the chemo can cause nausea but the team will give you tablets to counteract that.  You will have a planning appointment for the radiotherapy where your pelvic area will be marked with tiny tattoos and these are used as a guide to position you on the radiotherapy table.  This makes sure the radiotherapy only targets the areas needing treatment.  This is totally painless and only takes about 15 minutes.  However, about the third week, most of us began to have side effects.  Fatigue is very common along with sore skin in the pelvic area, but the team treating you are very good at prescribing any drugs you need, including anti-nausea pills during chemo, ointments if your skin gets sore and painkillers, you just need to keep them up-to-date.

It helps to have lots of ready meals in case you don't feel like cooking and if it is possible to arrange lifts to and from the hospital that can be a great help if you are feeling tired.

If you have read other posts you may have noticed talk about the Sitz bath, a portable bidet that sits on top of your loo.  I couldn't have done without mine, it gives great relief when everything is getting sore and itchy.

Many of us had a calendar and counted off the days of treatment, it is such a boost seeing the end of treatment getting closer and closer.

If you have any other questions please just ask - and we are always here to offer support should you want it.

Hoping everything goes really smoothly for you, we will all be thinking of you.

Irene xx

Irene xx

Hi Tiffy ,

Welcome to the MacMillan Online Community although I’m so sorry to hear about your diagnosis. It’s not silly to not want to tell people where your cancer is, I used to tell people it was lower colon cancer in the beginning, literally the only people that even knew what I was going through were my immediate family, my manager at work & half a dozen of my closest friends, I just deal with things better privately until I’m through the other side then I feel I can share a little more. This forum was my saving Grace as it was somewhere that I could talk about what I was going through & what I was feeling with a bunch of people that knew exactly what it was like. 

Can I ask is it anal or rectal cancer that you’ve been diagnosed with? You’re more than welcome here whatever your diagnosis but if it’s rectal cancer the treatment regime differs to that for anal cancer. There is a forum here for rectal cancer Bowel (colon and rectal) cancer forum you can just follow this link if needs be. 

Please feel free to ask any questions you have, nothing is taboo here, by default we discuss everything bottom, toilet & poo related.

Nicola 

Thank you for your reply, It’s good to know all these things as I know everyone reacts different but reading your reply gives me an idea of what to expect. I feel as if this is unreal, I don’t really think I’ve taken it in and probably won’t until the treatments starts although I’m quite emotional at times.

 I’ve just ordered a sitz bath so I have it when the time comes. Did you use Epson salts too?

thank you xx 

HI Tiffy,

Welcome to our nobody-wants-to-be-here club. I'm sorry you've got this awful cancer, but glad you found this place. I didn't until I was finished with treatment, but I'm still SO happy to have found this haven of support.

In my case, after all the testing and so forth I had a port installed in my chest, then two tiny tattoos on my hips (the size of freckles) to guide the radiation techs as they pew-pew--pewed me. I also had a mold taken of my hip/thigh/butt area so they had a cast to set me in, I guess to get the angle of the laser just right.

I had 4 days of chemo at the beginning of my treatment, running concurrent with the radiation. I wore a fanny pack with a rubber bulb of the chemo drugs which pumped into my port over 24 hours. Each day I got it replaced. 

The radiation is easy, in that you don't feel anything when you do it, and it's quick. 

You'll be surprised at how quickly you fall into the routine. 

Four more days of chemo at the end, then a surprise extra 3 days of radiation, and Bob's your uncle.

We'll talk you through it.

Hugs

Suz

Hello Tiffy

I didn't use the Epsom salts but quite a few people have and found them very soothing (salts being moisturising was a surprise to me!)  But it is a good idea to prepare your skin with lots of moisturiser before treatment starts and all during treatment.  Just be sure you don't have any cream on when you go for radiotherapy as this can form a barrier between the machine's rays and the area being treated.

Everyone will empathise with you feeling emotional and fearful, and the feeling of disbelief, it is such a life-changing event to be told you have cancer and it mightn't seem possible right now, but once treatment starts you will feel a lot more in control of what is happening.

And we have all been through it and have lots of tips to help.

Irene xx

Why do English always laugh when people say fanny packs!

Hi Tiffy we are glad you have found us and as Irene said, we don’t want to bombard you with too much information as it’s a lot to take in when you have just been diagnosed. Good you are getting the sitz bath and some did use Epsom salts just around a tablespoon is needed. I actually didn’t use salt a great deal but you will find what suits your skin. My first appointment with my oncologist before starting treatment was frankly quite a nightmare when she sat and read out the whole list of side effects that could happen. Most of these didn’t and the ones that do usually occur as time goes on and treated accordingly with creams provided. Loose clothes and no tight knickers help. When you start your treatment plan you will feel in more control. As far as telling people what you have is your business. I told my immediate family and a few friends and that’s all. Just keep in touch and we will help you through it with sometimes tears and sometimes laughter 

Julie

I don’t know if I’m replying to your messages in the correct place but want to thank you for replying to me. It’s good to know people are snd have been in the same situation and you’re all willing to help. I’m just wanting my treatment to start as it feels surreal just now. Thank you xx