Scan results- 1-0 to the Tumour

Hi superfly,

I’m really sorry that the meeting with your consultant didn’t deliver better news for you. You’re right when you say your tumour must be a particularly stubborn one for to have grown throughout treatment & to have not been affected at all, do you mind me asking is it a SCC you’ve been diagnosed with? But as difficult as this news has been to hear you’re obviously thankful that it hasn’t spread beyond your pelvis & it sounds as though your team are going to get things moving with your surgery as soon as possible! 

If I remember correctly there’s been a couple of members on here that have faced or are facing APR surgery so hopefully someone will see your post & jump on with a bit more of an  insight than I can offer. I’ve read up on both the APR & ELAPE surgery after seeing both mentioned on here but you could do with someone with ‘real life’ experience of either surgery to gain a bit of advice. 

Once again I’m sorry it wasn’t better news for you.

Nicola

Thanks Nicola 

It was a moderately differentiated adenocarcinoma and I have discovered it originated in the rectum rather than the anus- just before the line that divides the 2. So, technically I have rectal cancer rather than anal cancer .  The staging was T3nom0 and it has stayed as that. I am guessing it could have got a lot worse without the chemo radiation . I am hoping to have a conversation with a chemo radiation expert at the Christie Hospital which is where I had my treatment to find out why they think it didn't work, and if there are other chemo radiation options should the worst happen and the same tumour returns to a different organ in the future. I understand the hospital will analyse the tumour in detail once it is removed and maybe that will help understand how best to treat it in future should it return. 

Thanks alot for you reply

cheers

Sean 

Hi again Sean superfly, 

I did wonder as it seemed quite unusual for SCC anal cancer to not respond at all to the chemoradiotherapy but this makes more sense now you say that your tumour is an adenocarcinoma & has possibly originated elsewhere first, although I don’t profess to knowing much about this particular kind of tumour! Nevertheless I think I would be having the same conversation regarding any future treatment should you require it, hopefully you won’t. I’m an information is power kinda gal & believe no question you have should go unanswered, even if that answer is an uncertain one or a wait & see. I think most oncologists understand, having had a devastating diagnosis means we have these questions & are quite good at offering explanations.

I hope you get some answers soon. Take care. 

Nicola

Hi superfly

I’m going to list some people who have had APR’s so you can either contact them directly, or hopefully they’ll respond to this message   Ewok

In addition, you can contact  our online AC surgeon for any further medical advise or questions you may have. 

There is also 'The HPV & Anal Cancer Foundation' based in the US but with a presence in the UK. They operate a peer support programme and can connect you with someone who has been through the same surgery. I used the peer programme myself during chemo-radiation and found it very useful. 

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

I hope you will be able to connect with someone very soon and receive the support and advise you need to help you through this next chapter. 

Wishing you all the best with your surgery and recovery.

You will get through it all and stand strong once more. 

Sarah x

Hi Sean,

I can't begin to imagine how you must be feeling right now. I had my APR surgery in 2012, and will answer any questions you have - ask away! I was stage 3, with some lymph nodes affected but no spread. I had chemo and radiotherapy before surgery, and after surgery continued with chemo for 3 months. If your consultant is optimistic, I'd take that as a good sign! 

Seven years on and I'm doing well - I have my permanent stoma, and thankfully was discharged with the all-clear 2 years ago. 

Linda :-) 

Hi LInda

Thanks so much for contacting me and your words of support. It is immensely encouraging to hear of survivors like yourself who have had similar challenges and come through. wow 7 years- well done. I will certainly take you up on your offer I am sure over the next few weeks and months .

cheers for now and thanks again

Sean 

Hello Sean,

Yes, I had an Elape as you can see from my profile. It has worked too as I have just finished 12 month follow up post surgery. CT scan shows no recurrence of Cancer and my Colonoscopy today was clear as well. Yes I have a bag for life and I’m ok. Mine was originally a T3 but they downgraded it to a T2 as inflammation made it appear worse on the initial scans. So there is hope. I always here for any questions you have. Take care.