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 Em,

    I too had a lot of pain prior to treatment, and in fact for a couple of years before my diagnosis. I didn't have the big gun painkillers you've got, though, so that has to be factored in too.

    No way of telling, of course, how the treatment will affect you, and I hope with all my heart that you can work out during your treatment. It wasn't the case for me. I forced myself to walk up and down the driveway a couple of times a day, and as time went on that was really all I could do.

    I could feel the lump toward the end of treatment and during recovery. I think the radiation irritated it so it all went a little nuts, hopefully as the cancer there was dying off (haven't got scan results yet.) But I can't feel it any more now, a year past treatment.

    I know 'Take it as it comes' is insanely frustrating. For sure plan to exercise all that you can! Just don't be crushed if it takes a while yet before you're up to it.

    Hugs

    Suz

  • Hello Em

    My circumstances were somewhat different in that the tumour was in the rectum and submucosal, so much so that two biopsies showed clear results, although they knew that wasn't the case.  What is definite is that I have a photograph taken during a sigmoidoscopy pre-treatment showing a shiny lump, the tumour, and another taken in January this year and it has completely gone.  However, how long it took to get to the stage in the second photograph I don't know as although the course of treatment is only 28 days, the radiotherapy continues working for some months afterwards.  My treatment finished a year ago this month.  I am so sorry that you are suffering such pain, that must make your life so difficult.  I would make a list of things you need to discuss with the oncologist so that you don't forget, I am sure s/he will check your back passage to see what is happening with this protrusion.

    Finally, I am with Suz on the exercise front; be kind to yourself and don't expect too much.  I used to walk 6-7 miles daily with my dog prior to diagnosis.  The fatigue during treatment meant I didn't walk, and it wasn't until six weeks after treatment ended I went for a couple of hundred yards hanging onto my husband.  I quite felt dizzy and weak, I had no idea that I would be so affected by the chemo/radiotherapy and I considered myself as very fit.  But other people have sailed through with very little in the way of side effects.  A year out, and I am happy to say I am back up to three miles a day.

    You will get there Em, we are all here to support you along the way.

    Irene xx

  • Hello Suz, just read your reply to Em. I'm 10 weeks post treatment and in constant 24/7 pain. Went to my local OAU who changed my morphine & I had impaction (pain impossible to explain).Since then never out of pain. It certainly is frustrating because before the impaction I was back walking the dogs and going back to choir. Now I can't do anything but lie on the sofa, can't sit at all. I'm having some reflexology via the NHS & hopefully some hypnotherapy to help with pain. It's just one day at a time isn't it x

  • Hello again Irene, interesting about you being fit etc before the treatment, I was exactly the same out with the dogs twice every day, helping an old lady with her dog, singing in two big choirs, now I'm tied to the sofa all day. It's very harsh treatment indeed and no-one really warns you - I guess if the radiologists told the truth we wouldn't have the treatment. My partner now takes the dogs out but he's disabled and it's on top of doing all the cooking etc, but I must try and get a bit more positive, thank you again. x

  • Oh Jester, I'm so freakin' sorry. 10 weeks out and you should be seeing improvement by now. There's nothing more they can do? All my best mojo arrowing right to you.

  • Thank you so much Xx

  • Jester, I do hope the reflexology and hypnotherapy helps; I was severely constipated and ended up lying on towels on the bathroom floor whilst my daughter gave me an enema (important, don't use these whilst your internals are still red-raw, my husband heard me roar with pain on the other side of the house).  The impaction sounds horrendous and I am so sorry you have been left with these after effects.  I hope a big improvement is on the horizon for you.

    Irene xx

  • Reading about the constipation reminds me of the early days post treatment. Whilst I was on the oromorph I was also on movicol which kept me soft but a bit too regular. I stopped taking the movicol laxatives when I stopped the morphine. I started to put a small teaspoon of pysllium husk powder in my morning porridge which is supposed to bulk the stool and keep it soft. When I passed the 15 months post treatment I read about the benefits of black strap molasses. A teaspoon in a glass of warm water before bed and in the morning a result of very comfortable bowel movement and also surprisingly I had a very deep sleep. I would reduce the quantity as required and took out sugar, chocolate and basically became very food aware of everything I put in my mouth. Boring I know but I don’t diet but try and stay away from food that I know will play havoc with my stomach. I was on the FODMAP diet for three months directed by my hospital nutritionist. What a difference that made to how many times I went reducing from five time to two. I do not eat wheat and drink lactose free milk etc. as time goes on we learn about our bodies and what we can tolerate. I would wake every night around 2.30am with a mild pain which I think was my food digestion. Since I stop eating anything after 6pm that has stopped. I am at the moment doing anal massage with oil to break down radiation fibrosis and stenosis and really find some benefits of less pain. I think I takes time for our skin to recover and when you read articles saying there is no cure for radiation skin I think we must not give up and do what we think will. I would say that I keep my team informed of what I do so that if they felt it was detrimental they would say. Those who are in the early days of healing can easily feel this pain is for ever but when they start to learn to read their bodies it does get better as many of us can confirm. You do have some ups and downs but we have put up with some pretty aggressive treatment and some get off more lightly than others but keep positive. I now have been told I have spine osteoporosis but there is some great information out there to help with keeping our bodies strong as can be. This treatment side effect just keeps giving doesn’t it.

  • Jaycee, thank you so much for the above and black strap molasses is now most definitely on my shopping list; it really is a case of trial and error isn't it?  You seem to have been successful with what you have changed following the research you have done, and I am so impressed. I think I probably got off more lightly than you, there aren't many foods that I can't eat and I am so relieved about that as I am not the main cook in our family and my husband has had the patience of a saint for two years now in many ways.  Although I had first-class treatment when it comes to after effects I have definitely learned more here on the forum than I ever did from the team treating me.  I think the main difference is that here we are getting first-hand experience accounts from those who have undergone treatment for anal cancer, so thank you again!

    Irene xx

  • Hello Jaycee, on your recommendation I sent my long-suffering partner out the the local health food shop for some black strap molasses. The seller asked if it was for cooking and Peter said medicinal and she recommended a particular one. However, he bought both, bless him. Is the culinary one as good as the one where it recommends two teaspoons a day in warm water? They're both organic. Do I still need to take Laxido as well please?