recent diagnosis

Hi there ,

Welcome to the online community, although I’m sorry you’ve had to find us. 

I can imagine this has come as a huge shock, especially being informed by letter. This news usually delivered in a face to face consultation with either your Dr that did your biopsy or an oncologist. Unfortunately we’re facing challenges like we’ve never experienced before with the whole COVID-19 pandemic having taken presidence over everything including cancer diagnosis etc. 

You must be feeling like you’ve been left high & dry! Does your letter make reference to anyone being in touch at all? It’s obviously been over a week since you received the letter & I don’t think it’s unreasonable that you need to speak with someone ASAP. If there’s a contact number/Dr’s name or anything attached to the letter I would give them a call to see what the next steps are. Going off my own experience & from others sharing their experiences on this forum you should be looking at scans as the next step, both an MRI & a CT. These scan results are then usually viewed at an MDT meeting where your oncologist, surgeon, radiologist etc., will decide on the best treatment plan for you. 

I don’t want to overload you with information right now as I remember my head was in total overdrive after receiving my diagnosis but please feel free to ask if there’s anything specific you want to know. 

There’s many of us here that are through the other side of this & have had very successful outcomes  from our treatment, I’m 2 years post treatment with NED (no evidence of disease) to date & there are members still active on the forum that are 6 years+ post treatment & back to good health. We’ve all been where you are now & we’ll  be here to support you throughout your journey with a listening ear & useful advice when you need us. 

Nicola 

Hi Nikki65.

Many thanks for your reply.

 Just reading what you have said is really helpful. I must admit that I did feel like I had been left high and dry. After having been unable to contact his secretary I did manage to get a message to the consultant via the hospital's Patient Experience helpline requesting a call from him. He eventually rang me yesterday evening.........

 They had already discussed my situation at an MDT meeting and I was put on the waiting list 2 weeks ago for an trans anal extraction. To be fair, he was really nice and put me at ease. He thinks that he can remove it and that hopefully (as long as it hasn't spread) I should not need any other treatment. He said that the cancer that I have does respond to treatments very well. So things are looking good.

 He'll let me know this week when I will have the procedure. It's looking like it will be within the next 3 weeks.

Once again many thanks for your help

 Steve x

Hi again Steve (),

Although you’ve had to chase it up it’s good to hear you’ve had contact & you now know what the plan is moving forward. 

I also had surgery as first line treatment for my AC, I had a local resection, it seems a lot depends on very early diagnosis & the positioning of your tumour as to whether surgery is an option. My surgeon told me only 1/600 anal cancer patients are diagnosed early enough to be offered surgery prior to any other treatment. If you click on my username it’ll take you to my profile where you can read a little more about my journey there. 

It sounds as though you’ve a good mindset & are getting your head around things pretty quickly, which honestly is difficult but it’s half the battle. 

Hope you get more news really soon. I’ll be thinking of you.

Nicola 

Hi Guys,

 I'm sorry I've not been on here for a while, but I got so down and despondent because of the delays etc. It felt like everything was against me. But I'm still here!!

 What a journey it's been, after  all the delays and being forgotten about I am now about to start week 4 of Chemo/Radiotherapy treatment.

 The first couple of weeks were ok apart from the tiredness and diarrhoea and I'm starting to overcome my needle-phobia!!! But now it's extremely sore down below and going to the toilet is excruciating at times. I have been given some cream and anaesthetic gel to help ease the soreness and itching. It takes the edge off but I suppose it comes with the territory!!

 I must say the team at the Sunrise Centre  Truro have been great. Once they had me on their radar in late July everything started to happen. After the final scans etc before the start of treatment It was discovered that because of the delay the tumour (that was originally diagnosed as pre-cancerous cells) had grown to the size of a small orange and had spread to the nodes in  and around my groin. They are hoping to wipe out the tumour and kill all the cancer in the nodes with this treatment so fingers crossed!! So 2 & 1/2 weeks left of daily trips back and forth to the hospital. It's going very quick!!!

 Hope everyone is ok

 Steve

Hi ,

It’s good to hear from you. Don’t feel the need to apologise for not being active on here you’ve had a lot to deal with. 

As much as I appreciate that the pandemic has taken up a lot of resources in the NHS the full impact of this has yet to be seen in the case of delayed diagnosis with serious illnesses & diseases including cancers!! Unfortunately you are a prime example of this & I’m so sorry that you seemed to slip through the net so to speak & that things have progressed to the stage you’re at now, it really isn’t acceptable. 

During my treatment I found alternating paracetamol & ibuprofen 2 hourly helped with the pain & discomfort. Unfortunately not much helped with the discomfort of going to the loo!! Have you tried Piriton? it will hopefully help with the itching, myself & many others on here have used antihistamines to relieve this sometimes  unrelenting itch. Also I found salt baths really soothing when things got sore, I used either Epsom Salts or Dead Sea Salts. 

I was dreading beginning treatment but as you’ve mentioned it seems to pass really quickly once you’re in the routine of daily hospital visits. When you have lymph nodes in your groin affected with AC, from what I understand, your measurements that are taken at your treatment planning scans will take this into consideration & your nodes will get a blast of the radiotherapy too. 

Keep checking off those daily sessions & you’ll be finished before you know it & your body can start healing. Lots of good wishes winging there way to you for the rest of your treatment. We’re always here. 

Nicola

Hi Nicola,

 Thanks for your advice and kind words of support.

 I'll get some piritin tomorrow and give it a try. Also I'll give the paracetamol/ibruprofen a go too.

 Yes my nodes are also being blasted as well. I am looking forward to getting through the treatment.

 I'll let you know how it goes with the piritin et al.

 Many thanks again

 Steve x

Hi saintsfan,  sorry to hear delays have impacted you like this. It's shocking what an effect the pandemic has had in terms of other, just as serious conditions, being left untreated.  I had about 3 salt baths a day during treatment, using either epsom salts or just plain table salt. I found the treatment passed very quickly. Hope all goes well. 

Hi 1in1500,

 Thanks for you advice and good wishes.

 I like the idea of a salt bath so might give that a try although I have arthritis as well so it's a bit tricky getting in & out of a bath. Once a day would have to suffice!

The treatment does seem that it is passing quickly. All my appointments are lunchtime and it's quite a drive to the hospital every day which is getting exhausting. I'll be glad not to have to go in every day once it's finished lol

Hi ,

I too have osteoarthritis, if you’re going to try the salt baths definitely go for the Epsom salts, soaking in Epsom salts is great for joint/muscle pain & fatigue. I would have the water as hot as I could manage & lay there until it went really cool, I still use them regularly now. 

Nicola 

Hi Guys,

 I thought I would let you know how I'm doing so far.

 I have got 3 days of treatment left, I finish on Wednesday. Then 6 - 7 weeks of recuperation before I have a scan & see my consultant. I have finally managed to get the pain management sorted out so it's tolerable. I had a serious wobble last week because the pain just got so unbearable that I nearly gave up. But after speaking to the doctor and getting stronger meds I have managed to keep going.  Overall I do feel pretty good in myself but absolutely whacked!!

This may be in my head but it does feel to me that the tumour has been kicked out, because before I started the treatment I could actually feel it when sitting down, but not any more so fingers crossed. I'm a little uneasy about getting the final results although the consultant is 99% sure it will have got rid of the tumour and the affected nodes. It's going to be a long 7 weeks of waiting to find out! This maybe premature but I'm really looking forward to celebrating with my partner at the end of this journey.

Steve xx