Anal SCC (squamous cell carcinoma)

Hi Kazaboo

Hi Kazaboo, 

Apologises for my error, I haven’t been on here for a while but I just wanted to reply to your message. I’m sorry that you have had this news, hopefully as things progress things will not seem so bad for you, the treatment is very successful. Personally I didn’t find the chemotherapy treatment too harsh, I think because the chemotherapy was taken orally it was easier to cope with and not as dramatic on your body. I was given the all clear 3 months after treatment, I hope this is the same for you, like I said it is a very successful treatment. Take care.

Best wishes xxx

Hello Kazaboo

A warm welcome to the forum, although I am so sorry to hear of your diagnosis.  You have come to the right place for anything and everything to do with anal cancer and the forum members here have all been through the treatment or are going through it.  The treatment is tough but doable and we have lots of tips and coping strategies we will share once you have your treatment plan.

Don't doctors' words come back to haunt you?  A doctor in my workplace told be the most likely cause of death was cancer or heart.  I have never forgot those words and they came back with amazing clarity when I was diagnosed.  But, a long time has passed between then and now and there has been huge advances made in the treatment of cancer and also chemo.  And I tolerated the chemo very well, some don't that is true, but your treating team will keep a very close eye on you throughout and make any adjustments necessary.

When I was diagnosed my youngest grandchild was four weeks old, and like you I was full of huge regret and longing because I wouldn't see her grow.  Today she is four and last week I went to her birthday party ('because you are a girl, you see, boys are NOT allowed')!

I will be thinking of you this week and truly, once the treatment starts there is a light at the end of this very dark tunnel that you are in right now.

Big hug, Kazaboo

Irene xx

Hi Kazaboo

Sorry about your diagnosis. I completed my treatment on 6th November and I was worried about the risks of treatment going on my limited knowledge. I discussed it with my oncologist and he said there are risks with everything but things have come along way and the chances of getting problems down the line are small as the time between treatment and possible problems arising is so long that it won't be an issue. I still worry now about it, but felt I didn't really have another option. Sending hugs. Xx

Hi Kazaboo,

 I am so sorry to hear of your diagnosis. You are in a state of shock and those untrue words spoken by that Consultant in the past are adding horribly to your distress and fear which is completely understandable.

All of us on the forum have had the diagnosis and have either gone through, going through or waiting to start treatment. The treatment has a very high success rate and many on the forum are many years on from treatment. 

As the others have said, this is a great place to get advice, tips, support and help. I’m glad you have found us and a very big welcome to you, although of course you would rather not be here.

 I was terrified of the treatment but found it manageable. The chemo caused some nausea but otherwise was ok. You will have a supportive clinical team with you throughout.

Big hug to you x

I had exactly the same it is all very scary,  I had Chaemo radiotherapy.  I dose of Chaemo in my arm the rest was in tablet form.  The radiotherapy therapy doesn’t hurt and they tattoo where it has to be aimed at.  I’m not saying it was easy you do get after affects as many people will tell you.  I was in terrible pain beforehand but after radiotherapy it eased but then I had side affects very sore, painful toilet habits, and going to the loo a lot.

I finished my treatment on 5th January 2024 and given a clear diagnoses on the 22nd November 2024.

I would invest in a sitz bath and non perfumed natural medication.  The radiologist will give you advice on pain relief and moisturising the sore areas.  I’m back to my oncologist in March.  

Thank for you reply. Was your anal cancer too? 

Hi Kazaboo ,

Firstly welcome to the MacMillan Online Community although I’m really sorry to hear of your recent diagnosis. 

What was probably a flippant remark (a bad one at that!) on that consultants part has obviously deeply impacted you & he/she should be incredibly careful in future. Firstly this is not true! Just think of how many peoples lives have been saved by having chemotherapy for a cancer diagnosis! Oncologists don’t prescribe chemotherapy to kill people, yes there are particular chemotherapy’s that are very harsh & some have to be stopped but if you have the standard treatment for anal cancer this will not be the case. You will also be followed up really closely during your treatment with bloods etc., being checked weekly. 

I had a very short infusion of mitomycin on day 1 of treatment then oral capecitabine each day of radiotherapy thereafter. I had little to no side effects from the chemotherapy, I had a couple of mouth ulcers around 3-4 days in, my hair went a little thinner but not that anyone else would have noticed. Some people get some nausea (I didn’t) but your treating team will give you anti-sickness meds to combat this should it be the case.

SCC anal cancer is generally a very treatable cancer & there are many of us here that are testament to this. I’m almost 7 years post treatment & doing well. 

Please know we’re here to support you however we can. Good luck with your appointments on Thursday.

Nicola 

Thank you so much for your reply. hearing you are 7 years post treatment and doing well has given me hope. ️

Yes had a big lesion in my anal canal 8cm x 4cm xx. Had to have lots of scans PET scan was the one I hated.  Simply because it took over two hours had to sit for an hour while the radio active liquid highlighted everything.   Also when they do the radiology you have to have a full bladder so I had to drink a lot  of water before I got there.  Otherwise you sit and have ultrasounds until the bladder was full.  Luckily the cancer hadn’t travelled anywhere else.  It’s five and a half weeks of treatment you get the weekends off No Chaemo or radiation.  It’s worth it though what’s five and a half weeks out of a lifetime.  It’s pretty amazing what your body can do.  Just take one day at a time.  Hope everything goes well