Hi All, I'm 2 months post surgery where I had extremely painful external lumps removed and that's when the internal mass was discovered. I now know this is anal cancer but not a lot else until I speak with oncologist next week.
I appreciate we all have different situations with the anal cancer but just wondered how common it is to have ongoing pain prior to treatment. Prior to surgery I was in excruciating constant pain, that had built up over 6 moths. I'd also started to have nerve pain radiating into my left leg - which doctors kept saying was a separate sciatic issue, despite me explaining it was all stemming from same place e.g. the external lump / area between my legs. The surgeon says the internal mass is pinching the sphincter and that's what's likely to be causing the pain. So I still have this nerve pain, and pain by anus getting worse past couple of weeks. Nurses made me chuckle as they said perhaps you need something stronger than paracetamol so I explained I'm already on amitriptyline, nefopam and morphine (latter I take only at night when it's niggling so much I can't sleep). I'm not someone who likes to take tablets but it's the only way I can function at moment.
With treatment ahead in mind, I'm wondering if this particular pain will get worse or should get better (I can see that seems like a silly question!). I was hoping I'd be back to my normal exercise levels & read of others exercising during treatment, but I can still only manage slow short walks. Somewhat frustrating but I guess until the mass reduces the pain won't reside. I suppose I'm wondering if anyone else has had this how long it took before they didn't feel the internal pain?
Since surgery I've also had a protruding external mass I feel on passing a bowel movement. I didn't have this before the camera investigation and biopsy so I was petrified when I first felt this. It's definitely not a hemorrhoid, I'm starting to wonder if it's the cancer - I will bring this up when speak to oncologist. Has anyone else had this? If so, did this alter after treatment & disappear? My only other thought is, it's potentially a rectal prolapse.
Any advice / sharing of circumstances much appreciated x
Hi Jester ,
I just thought I’d jump on this thread as your treating team being ‘non-existent’ considering you only finished your treatment in January is completely unacceptable!! If you’re still unable to sit etc., then personally I think you need a physical examination, I would advise you keep phoning your oncologist until they agree to see you to see exactly why you’re still in so much pain, be insistent, you are your best & only advocate in this situation.
Regarding your constipation etc., I was unable to take any opiate based painkillers throughout surgery, treatment & recovery because they slowed everything down to s near standstill & it was so painful & almost impossible for me to pass anything, I was provided with Movicol first then Laxido & relied on these for the first 3 years following my treatment, once a day was usually enough but if I hit a sticky patch I’d take 2 together & that usually did the trick.
We can offer advice based on what worked for us personally & we have emotional support by the bucketload but we’re not medically trained obviously & in my humble opinion you definitely need to be seen by someone from your treating team be that your oncologist or colorectal surgeon, you’re pretty fresh out of treatment & they have a duty of care towards you for the next 5 years at least, if you have to make a complete nuisance of yourself then so be it but please ring, ring & ring some more until someone agrees to see you in clinic & check you over as you really shouldn’t be suffering like this.
Nicola
