Ongoing pain before treatment & protruding mass

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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 purchased a jar of meridian organic black strap molasses. It doesn’t give instructions on the jar regarding dosing just that it can be used for a natural sweetener or in cooking. I would not take two teaspoons as personally that would be too much for me. I started with a teaspoon in a glass of warm boiled water. I would drink this all in one go before bed. I was not taking any laxatives at this stage so cannot advise about that. It does act as a laxative. I have read some people would just take a tablespoon and just eat it. I found information on Google under benefits of blackstrap molasses. Make sure it is organic and look up blackstrap molasses for information to help you make an informed decision. What a thoughtful partner you have. Hope this helps.

  • Hi Jaycee, it's the Meridian one he's bought and another one, both organic. I had only intended taking one teaspoon anyway, but I did take a Laxido this lunchtime because I took two brufen+codeine and of course codeine blocks you up, I don't usually use that one but thought I'd give it a try and it has helped a lot. I'll think of you tonight when I have my molasses tipple - could start a new craze! My poor partner had no choice - I gave him the money and sent him out for it, but he has been a saint this past three months, does all the cooking & walks the dogs and he's disabled himself, he can't really walk, so has an electric trike and the dogs love running along with him lol. X

  • Hi Jester you do seem to be taking a few painkillers to cope with the surgery. When I first had my sigmoidoscopy they found an abnormal area and I had surgery to remove this. My surgeon said they would remove this area plus a margin. He said to imagine this area as an egg yolk with the yolk the abnormal area and the white area to take tests to see if there was any cancer cells left. They found cancer cells so referred for the anal cancer treatment. The surgery left me extremely sore and it looked like I had a black grape protruding out of my anus and my pain was so bad when I rang my hospital they suspected a prolapse but when they examined me they said everything was fine. I sat on a sitz bath of lovely warm water to keep that area clean. My stitches did burst and I ended up in hospital for three days until everything settled. The grape did eventually disappear leaving a skin tag and after the treatment this now has disappeared and everything now looks normal. I can well empathise the painful bowel issues due to what you have had done, it’s really sore isn’t it. If you do have to go down the route of chemo radiotherapy make the sitz bath your best friend. Keep us posted and take things slowly with the molasses and keep your team posted. Take care Julie x

  • Hi Julie, I've had the chemo/radio which finished on 2nd January and all this has been happening since then. I'm going to have my first molasses tipple in a bit, it smells gorgeous. I'll let you know how I get on. My "team" as you term them are non-existent, I've had no aftercare of any sort, just an answerphone on the cancer hotline and then stupid answers given, no help at all, but with the help of this forum I'm feeling stronger already, so thank you very much. Bee x

  • Hi  , 

    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 

  • Hi jester I completely agree with Nicola that you need to actually be able to speak to someone about your situation and be examined. I can only say what I tried to relieve constipation and also the other way but would hate to think my saying this would make your situation worse. You are not far out of treatment and will be very internally sore. The best of luck with the hospital 

  • Hi Nikki65, I have phoned the cancer hotline several times when things have been bad and am just told "it's to be expected", or eat such and such or take paracetamol - how many times I've said I'm allergic to paracetamol I don't know and it's never been put on my record. They are totally useless. Once they called me in and two very young doctors looked at my bum, just a glance and decided to change my morphine to slow release and that's when the trouble really started. I became impacted - you have no idea of the pain and I had 111 out twice to help with suppositories etc. I've now stopped taking morphine all together because it blocks me up. I use brufen and yesterday a tablet combination of brufen & codeine which really helped so I took a Laxido to stop getting bunged up as codeine does that as well. I later had an emergency appt with my consultant who said it couldn't possibly be the results of radiotherapy at this late stage - what rubbish! She did give me some anti-depressants because I was so scared and weepy all the time, so unlike my normal self. I then went into the oncology assessment unit the next day as I was having panic attacks and they kept me in for a day and I felt ok in there. I also had a CT scan which showed there was no abscess in my bum which the consultant thought it was, but as soon as they said I had to come home I had another panic attack and was crying so they gave me some lorazepam and a card with an appointment for a follow-up phone call the next day and the district nurse would come on the Friday. No phone, no district nurse and I haven't heard a word from them since - I have no faith in them at all which is why I've been in such a state. However, now I've found all of you here I'm so much better and steadier and can find an exact answer to whatever I need to know on here, unlike the medical profession who don't really seem to give a damn. 

  • Hi Jaycee 12 have a look at my reply to Nikki65 regarding how I've been treated by the hospital "team" - pretty dire, but now I've found this group I feel so much better and supported. Thank you to everyone Xx

  • Hello Jester it seems you have been massively let down by your treating team. Do you have something like a MAGGIES at your hospital? If you do, you might find better support from there and help with getting the treatment you need. I feel so lucky to have had a brilliant nursing team at my hospital who were always on call when I needed to ring them for help when in pain. You can always ring the Macmillan nurses online here for information too. It really makes me cross when you cry out for help you are feeling ignored. I took morphine every day and they specifically told me to take movicol to prevent constipation which they also provided and it was very wrong of them to not have done this for you. . I am so glad you are feeling more supported on here for tips on how to cope with side effects and eventually getting back to normal or should I say your normal as we all find ways to live our lives as best we can after anal cancer treatment. I am wondering as it’s a rare cancer some doctors are not equipped with the knowledge of how to help patients. Just keep us informed on how you are doing so you don’t feel alone. Julie x

  • I am taken aback by the fact you were given an appointment by phone and a promise of a visit and neither happened.  You can take this up with the PALS department at the hospital if you feel very strongly about it..  I am so sorry that the the Oncology Department treating you seem so lacking in basic care when you are obviously in need of some help and reassurance.  I hope things get better for you Jester.

    Irene xx

    Ps My daughter is getting me blackstrap molasses today  - I'll let you know how I get on!