New diagnosis

Hello Cl4r3,

Welcome to the Online community. I am sorry that you have found out about your Anal cancer through the MDT uploading your notes to the NHS app. It must have been a shock to find out this way. I am sorry that they won't tell you anymore even though they know you have seen it. 

It is good that you have a meeting next week and hopefully you should get a few answers by then. A scan would be very likely to see the extent and position of the cancer. The scan would also help workout which treatments would be best or at least the next step. 

I have put a link to the Anal Cancer booklet that hopefully you may find helpful. it will tell you a bit about the treatments that may be possible. You may want to have a look as I find Googling is not always the best thing. Some of the information is out of date and not always accurate. 

MAC14811 Understanding anal cancer (macmillan.org.uk)

When you have your appointment next week it may be an idea to write down a few questions or to take someone with you as I found it was quite a lot of information to take in all at once. I also found my mind went blank. I was accompanied by a nurse which helped as afterwards she took me to a side room and answered anything that I had not taken in during the appointment.

I will also pop a link here that may help with questions about being diagnosed and what normally happens. At the bottom of this page are other ways that you can access support through Macmillan if you want to. 

Diagnosis | Macmillan Cancer Support

I hope that this may help but please ask if there is anything else

Jane

Hey Cl4r3 ,

Welcome to the Macmillan online community although I’m so sorry to hear of your recent diagnosis, I’m also really sorry at the way you learned of your diagnosis, that’s incompetence at its finest!!

I see that Jane has already signposted some useful information for you.

Regarding treatment options, the gold standard for anal cancer is chemoradiotherapy. It’s scary facing treatment, I think we’ve all felt that fear but if this is what your treating team advises believe me you’ll get through it. I mentioned to my oncologist about the awful stories I’d heard of the treatment & he said that it’s often the worst case scenarios that appear online so try & bare that in mind. My treatment regime was a short infusion of mitomycin (chemo) on day 1 of radiotherapy then capecitabine (oral chemo) twice daily along with radiotherapy Monday-Friday with weekends off all treatment. My radiotherapy sessions literally took 10-15 minutes each day & I had very little reaction to the chemo at all. The most prevalent side effect to this treatment tends to be the skin reaction to the radiotherapy but this varies from person to person.

I had a local resection to remove my tumour due to being diagnosed very early stages (2cm in circumference & 2mm in depth) but still ended up having chemoradiotherapy as there was only a 1mm clear margin on a small area close to my muscle which is cut off point for further treatment. I’m now almost 5 years post treatment, fit & well & hopefully I’ll be discharged this June. 

Please don’t hesitate to ask if you have any questions at all, nothing is too personal or taboo here. 

We’re here to support you however we can. 

Nicola 

Hello

So sorry that you are going through this and that you had to find out in such a horrible way. 
I have the same kind of cancer and am having the chemo and radiotherapy. I found the waiting was the worst time. Now the treatment has started the days are actually going fairly quickly. 

I have found the support here really helpful. 

Hi Cl4r3 

I’m so sorry you found out about your diagnosis the way you did, you’ll still be processing it and understandably wanting answers. This forum has been so helpful to me since I got diagnosed so keep checking back and asking questions - everyone here is so helpful. 
I’m currently going through my treatment - exactly as Nikki65 has described - and am just coming to the end of week 3. I haven’t had nor been told I will have any surgery.

I really hope you’ll be ok until the 5th but you’ve found a really supportive forum to help you if you’re struggling
Claire xx

Hello CI4r3. To find out in such a way-what a shock. You will know so much more on 5th May. I was diagnosed in September 22 and received the hame treatment in October/November 22 as Nikki65 but no surgery. I did have side effects from the chemoradiotherapy mainly soreness around the anus/vagina area. I was given Flaminal gel which did help. I also purchased a Sitz bath - you place on top of toilet seat & fill with varm water/Epsom salts to ease any soreness when going to the toilet. Diarrhea was also a problem for me but may not be for you. I was prescribed Loperamide to help with this. PET scan seems to be the norm. This gives more in depth info as to the size/location of the mass and will lelp with your treatment plan. I also had MRI scan. The waiting is the worst time. Once I had seen the oncologist and received a good explanation of the condition and the treatment I would receive, although still a shock to receive the diagnosis, I came out of the appointment feeling more positive. I hope this is the same for you. It is a good idea to write down any questions you might have as you may feel overwhelmed by all the info you are given.

Try and stay away from Dr Google. Some of the info is not helpful and is out of date. You should be given contact numbers to call if you have any queries. Ring them. I have found my contacts very helpful. I told only family & friends that I felt needed to know. Different reactions received. So be prepared for this. I hope you get lots of support from any family & friends you do decide to tell. I have found the forums on here very helpful. I don't post much but I have found that reading others experiences has helped me. All best wishes for next week. Karen. X

Hello Cl4r

I am horrified how you found out, my husband filled in forms for us to access details and there was a warning that we might find out things that are upsetting and I am really sorry that this is what happened to you.

I hope that you have prompt scans and results; I think they won't commit to giving you any more information because they can't until they have ALL the results in; right now they just don't have all the information to hand.  Of course this is little comfort to you waiting but all these scans and tests mean you will get the correct targeted treatment for your cancer.

The standard treatment isn't easy; but you will meet many people on here who have had it and are around to tell of how their lives have moved on and the dark days are in the distant past.  The treatment can be tough (I must stress for some, but certainly not all), and it is frightening and unknown, but if you need support, we are here.

Irene xx

Clr43, I’m in the same position as you.  I’ve gone through the CT, MRI and today I had my PET scan…all were fine, with no pain or side effects.  The next hurdle for me is the start of my 5.5 weeks of chemoradiotherapy, with chemo on week 1 & week 5 (as an inpatient for the entire wweek), Monday 22nd May, 2023.   I feel very fortunate that my Colorectal surgeon and Oncologist have provided lots of information.  My advice is to take whatever time you need in any of your appts to ask for detail and advice.  Take care meantime, Coinnach

Oh, what a difficult way to find out! I'm so sorry, both about the cancer and the method. 

I'd be very surprised if your care team doesn't put chemo and radiation front and center. It does seem to be the gold standard treatment, and to its credit, the success rate is good. Especially for someone as young as you.

I didn't have any surgery beyond the biopsy. Five weeks of five-day-a-week radiation, with 4 days of chemo at the start and 4 more at the finish. I wish I'd known about this community during the treatment! But finding it later is better than nothing. The support and shared information here is priceless.

While you're waiting for the next step (and ugh, the waiting is the worst), get yourself organized for the journey. Get a Sitz bath or a bidet attachment on your commode, round up your community for help getting rides to and from treatment (you don't want to drive yourself for the entirety of it) and help with things like child and pet care. 

I  hope you get some answers and the process started ASAP.

Hugs

Suz

Oh, what a difficult way to find out! I'm so sorry, both about the cancer and the method. 

I'd be very surprised if your care team doesn't put chemo and radiation front and center. It does seem to be the gold standard treatment, and to its credit, the success rate is good. Especially for someone as young as you.

I didn't have any surgery beyond the biopsy. Five weeks of five-day-a-week radiation, with 4 days of chemo at the start and 4 more at the finish. I wish I'd known about this community during the treatment! But finding it later is better than nothing. The support and shared information here is priceless.

While you're waiting for the next step (and ugh, the waiting is the worst), get yourself organized for the journey. Get a Sitz bath or a bidet attachment on your commode, round up your community for help getting rides to and from treatment (you don't want to drive yourself for the entirety of it) and help with things like child and pet care. 

I  hope you get some answers and the process started ASAP.

Hugs

Suz

Thank you everyone!

This has been really helpful, can I just ask if anyone’s hair has fallen out with the treatment, also has anyone heard of anyone having to have a stoma fitted?