Waiting......

Hi Deb1E

Its totally normal to be feeling all over the place. You’re trying to process the bombshell of diagnosis whilst being in limbo waiting to find out what will be happening next. This is the worst time, the waiting is really hard but believe it or not, you will feel better once treatment starts.

You have come to the right place. As you may know anal cancer is rare so there’s not many of us out there. However, we have a lovely, supportive AC community on here, all at different ages in their cancer journeys. This really is the best place to come to get advise and reassurance from people who really understand what its like.

Please don’t worry about hassling your nurse, she’s there to help you, that’s her job. However, if you prefer, come on here with any questions, there will always be someone who will get back to you.

I was diagnosed last March 2018. Total bombshell as I’d been feeling well and didn’t have any symptoms other than what I thought was a hemmorroid. It turned out to be cancer and then my journey started. To cut a long story short, I went through the protocol treatment, 5.5 weeks of chemo-radiation and was told in Sept that it had worked, my tumor had gone! I am now 12 months NED (no evidence of disease).

The great news about the treatment is that its very effective and curative. Treatment is short and sharp, we don’t have to endure months of treatment like other poor cancer patients.

I’m not sure how much information you already have or want, but I can give you links to resources should you wish to read them. 

Your multi-disciplinary team will now be reviewing your scans and when you meet with them next you will be told your staging, what treatment you’ll have, side effects etc. This can be an over-whelming meeting, so good to take someone with you, maybe prepare some questions beforehand or, you can record the meeting, with their permission. Treatment usually starts about 2 weeks after this meeting, although things can vary between hospitals. The radiotherapy is the main treatment for this cancer and it takes quite a while to set up all the measurements to ensure the tumor its targeted correctly. 

This site is also great as you have access to a helpline (tel no. below) where you can talk to qualified nurses. In addition, we have the ‘ask an expert’ feature at the top of this page where you can email directly an anal cancer surgeon with any questions.

When I joined this site I connected with another lady who was starting treatment on the same day. We texted each other every day throughout treatment and beyond. It was very supportive having someone to talk who was experiencing similar things. This might be something you'd like to consider. I’m sure other people will get in contact with you, now you have posted.

I’ll leave it there for now but will reiterate that you will find this forum very useful and supportive.

We will wait to hear from you.

Sarah x

Hi Sarah

Sorry I didn't get back to you before but we had to attend a funeral yesterday - everything seems to happen at once.  I feel much better hearing your story and to hear that the treatment is effective and curative - I was so shocked when I was told (went on my own as I thought it was just a routine follow up appointment) that I didn't ask any questions. I just wanted to get out of the room at the time and when I was thinking straight regretted it.

It's quite spooky but whilst typing this the hospital called to let me know that I was discussed yesterday and I will be contacted by the oncology department to arrange a meeting to update me and to discuss the next steps etc.  So hopefully will hear v shortly.  

I will take your advice and start to think about what to ask and I will definitely take someone with me this time.  Thank you for your help and will keep in touch if that's ok.

Deb1E x

Hi Deb1E - from another Deb.

I've just started treatment and am on Day 3. I suffer with what I now know to be extreme anxiety and the shock of this diagnosis has sent my mind spinning all over the place!

Feel free to ask me anything at all. You'll find this group amazing - they've been so much help to me you wouldn't believe!

Deb x 

Hi Deb1E

I will be happy to help you anytime, as me whatever you like.

Feel free to post on the open forum or mail me directly.

I don’t work full time so am pretty responsive.

This is what I do now, I use my experience to support and help others to be better informed.

Sarah x

Hi Debh1

You may regret making your offer! 

I am a bit of a worrier myself maybe it's a Deb thing ...  I have found just reading the posts really helpful and positive which is what I need right now.  

I met the Consultant yesterday afternoon and having read through the posts on here I was upbeat but came out feeling more anxious which is mad because my AC has not spread so that's good but she only seemed to go through the risks, side effects etc.  I know she has to but I was looking for a bit of positive support too.  She also threw a bit of a curve ball because she asked if I would take part in a trial they are running rather than have the 6 week protocol treatment.  So now worrying about what to do about that.  My family are against it... they think I should hit it with everything I can and go the tried and tested route.  Next step planning appointment and then treatment unless I agree to the trial then I think I transfer to the research team.  

I was about to say hope your treatment is going well - just seen your post am sorry to hear you are suffering with nausea hopefully it will settle down quickly.  I am sure somebody on here will have been there and have some good advice.

Keep in touch and let me know how you get on. 

Deb x

Hi Deb,

I was diagnosed with anal cancer last February & I’m also involved in the Plato trial, I’m presuming this is what you’ve been offered? 

From what I understand the trial won’t offer you any less effective treatment but you’ll be monitored throughout by oncology rather than being discharged into surgical care post treatment, also I fill in quality of life questionnaires every so often for them to record long term effects of the chemo-radiotherapy. I think the trial allows your team to tailor the chemo-radiotherapy to your needs rather than giving everyone the same dose for the same length of time. My treatment on the trial consisted of 23 sessions of chemo-radiotherapy rather than the standard 28 & my radiotherapy was of slightly reduced strength & very targeted as I’d had my tumour removed surgically 8 weeks prior, therefore it was aimed at a small area that had a reduced clear margin after the surgery. There are a couple of us on here involved in the Plato trial. If it is this trial they’re offering you ask your oncologist for more of an explanation of what it’ll mean for your treatment also if you make a new post on the forum entitled Plato trial then I’m sure the others that have been involved will share their experiences too. 

I’m now 13 months post treatment & have just had the results from my annual scans & there’s no evidence of disease (NED). 

Nicola xx

Hi Nicola

It is a bit more reassuring hearing from someone who is not only on the trial but 13 months post treatment - it is PLATO that I've been offered.  I totally agree with what they are trying to achieve by the research and my consultant was obviously trying to steer me in that direction but she didn't seem to have any anecdotal information and the information sheet is purely procedural.

Having read your post I will definitely ask more questions before making a decision.  My tumour (T2) is still in situ so not sure if that makes a difference but I will also take up your suggestion to post a plato trial on the forum.

Pleased to hear your news and looking forward to being able to post something similar down the line.

Debbie xx

Hi Debbie, 

Everyone I’ve come across on here, me aside, that are part of the Plato trial all began treatment with there tumours in situ, it’s pretty rare to catch things early enough to qualify for surgery as first line treatment, 6/100 according to my surgeon, as these tumours are pretty slow growing & don’t cause many symptoms or regularly go misdiagnosed as we all know! 

There’s many of us here that have had excellent results through the chemo-radiotherapy, standard treatment & trials, many that have been staged much further on with nodal involvement too so keep that at the forefront of your mind whichever path you decide to take. 

Nicola xx

Hi Deb,

I saw my consultant yesterday and, like you came out a bit scared. Sounds like we are at the same stage in the process, I’m waiting for the planning appointment with the tattoos and scans.

Last night I had such a horrible dream it makes me cry when I remember it. Just getting on with normal life seems impossible right now.

xx

T

Hi Tungsten

I think we are.  I'm waiting for the planning appointment with the tattoos and scans as well - not had a tattoo before but if I did not sure my btm would have been my first choice!  I have been told my appointment should be in the next couple of weeks so watch this space.  

I am sorry that you feel normal life seems impossible right now.  I am scared and if I am honest angry and a bit (more like very) sorry for myself and find the waiting between appointments the worst part but I am finding the posts on this forum really helpful.  I have got more useful, positive and practical information from the forum than I did from my appointment with the Consultant.

Let me know when you get your planning appointment - we will probably be having treatment about the same time so maybe we can keep in touch and help each other out along the way?

xx

Deb1E