Hi I'm not in your position but I did want to reach out. 

My partner is currently waiting for biopsy results, CT and MRI scan for a large (10cm) growth in the anal canal and rectum. I feel he is potentially a few weeks behind where you are.

I'm here if you need a sounding board. It's quite a rare cancer I know but there must be others on here with it so I hope some of them connect with you for support. 

Hi 

Thank you so much for reaching out.

I probably am a few weeks ahead of your partner. My growth is around 8cm and I have had the MRI and CT scans, they are a breeze nothing to worry about you just have to lay still and the staff are so nice.
My first biopsy results came back "no evidence of malignancy" and i was so relieved but I had to have more biopsies taken under a general anaesthetic as the original doctor who did the colonoscopy was sure it was cancer. Sure enough after 10 days these results came back this Wednesday as positive. 
I am now waiting to be transferred to hospital for treatment.

I hope your partner gets his results soon and that his growth is benign, the results take about 10 days and it's hard waiting for them.

Here for you too

Do you have someone to support you with it all? Have your doctors explained treatment and expectations to you?

I don't really know anything about it at the moment and was hoping someone who's in the same position might respond to you. Can I ask are you often uncomfortable and in pain? My partner's practically housebound by it now and he really struggles to travel in the car. I have no idea if it can be something which isn't cancer.

Hope I'm making some sense x

Hi there

I was diagnosed in November...and began combination chemo/radio in December..

It was 5 weeks 3 days (28 radio session) with chemo in week 1 and week 5.

In terms of coping - I found the biopsy that had prior to diagnosis more uncomfortable.

The treatment itself was OK...its the side-effects of the radio that are tough.

Its NOT easy

The most intense...the skin damage from the radio- that becomes most intense in the last week...and then the week / 10 days post treatment...then the skin starts to heal...I finished early Jan and things are now settled...certainly in terms of pain relief...though other side effects still persist- but they are more inconvenience..

The effect on the prostate.... makes toilet habits a bit erratic.

Advice...

Listen to the radio/chemo teams...they know and will help...so be open and honest with them

DONT try and be brave...take the pain relief on offer...and do so early...dont wait!!

Drink LOTS

MOISTURISE...LOTS...youll get specialised items - I found Flamigel RT was excellent.

A rubber ring to sit on towards the end of treatment / post treatment.

Humour helped me get through.... and some amazing friends...I found I became far to comfortable talking about anal/bottom/***/nether regions with almost anyone!!!

Any questions.....Please just ask 

I was fortunate it was caught early...and wasnt really experiencing any issues that might have highlighted a problem.

The mass was close to the opening of the anus...and not that large ...a couple of cm. - but apparently because it was so low down it meant the radiotherapy involved a significant number of different beams with every treatment...so I was on the table for 20-30 mins.

Again I was very lucky...there was no spread detected to the lymph nodes.

Had a review a couple of weeks ago 2 weeks post treatment - Dr did a digital exam and was pleased that things felt normal (being so close to the anal entrance she was able to identify it by digital exam prior to treatment - and assess the difference post treatment)

Formally however - can assess the success of the treatment until 12 weeks post treatment via scan (prior to that time it's possible there will still be residual inflammation from the treatment- and this may be detected in a scan/ confused with residual cancer mass) so it will be mid-April before I know with any certainty.

Things I forgot to mention....

Dependant on where the cancer is positioned you probably need to have a full bladder when you have your radiotherapy- which means consuming decent volumes of water in the hour or so before treatment (750ml -1ltr)...This can be hassle, dependant on your journey...and any wait for treatment.  Especially towards the end of the treatment when the bladder habits change and you are likely to need to go more frequently/at short notice.

(Having full bladder reduces the risk of damage to the bladder during treatment)

Bowel movements.... these will almost certainly be affected by treatment...can become much looser... along with slime/mucus discharge ...so sanitary/incontinence pads can be helpful in terms of 'peace of mind'.  But that depends on how each individual is affected....and everyone's body copes and reacts differently.

X

Hi there

thank you so much for all your information it has really helped me .. I am just starting week 3 of my treatment and really wanted to ask you about the Flamigel RT cream. I have got some in your advice but really wanted to check that you can use it everywhere .. meaning around the genetal regions and bottom as it doesn't actually say on the leaflet .. sorry not a great question but though I would check before slapping it on!

Hi

I know exactly what you mean!

Id read that and wondered the same thing...but was advised that it was ok to use it....

I was also prescribed 

FLAMINAL forte...which was much 'thicker' consistency....and particularly relevant /appropriate when the wounds were 'exuding'...

If you are 3 weeks in...then I would imagine that the RT is more relevant ...

Even when using the flaminal ...on the area that was worst affected....I was using the flamigel around the wider area....

I applied liberally!!!

Thank you so much .. how are you now?

Have my 12 week post treatment scan early April

But at last consultant review just over a week ago...she said she  was really pleased...and that given the digital examination she was confident that everything is looking good!

Next review booked for May...she will call if there is anything to discuss - but she really does not expect to be calling me...

(Given the location  of the original mass/lesion - she feels that the digital exam is as reliable as the scan...though obviously will get the scan to be totally sure....)

So it's good...fingers crossed.