New here with Anal cancer

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  • Hi I was misdiagnosed told it was a skin tag that can't be removed as it'll regrow and was completely benign. 
  • A different-third consultant was suspicious and id waited hours in hospital and np time given for surgery. Diabetic had no food or drink and got highly anxious and ran out in tears when she said they can be cancerous. She gave me time to get home and rebooked me and got me first on list. 
  • Been in remission since finishing treatment in Oct '21. Early stage 1 no spread a small lesion in rectum too. They were going to put a camera up there but covid was rife I was too scared to go to hospital but he did say it won't have made any difference if I had it done. 
  • Only had radiotherapy because I've got cardiomyopathy, copd, diabetes and my Oncologist thought chemo might make me too ill to cope with either and radiotherapy was more important. Getting some late side effects leaky bum ,mucus or I fart and watery poo comes out. Usually get warning by way of ring my tummy and a lot of wind. Bladder bit irritable but I had interstitial cystitis previously so hard to know but I'm taking Oxybutynin some nights if I have a bad night with bladder. 
  • Treatment was fine until last 5 days I was burned and swollen downstairs and couldn't sit down. They wouldn't give me cream because it interferes with radiotherapy so I threatened not to return for last 3 days if they didn't give me something. I couldn't sit down. So I was given Oramoroh and Naproxen. Just had an appointment last Wednesday, all good extended to 4 month appointment instead of 3 now but oncologist said in Feb she didn't know why I was anxious it's not like I had scan results or any worrying symptoms. They have no idea. No there wasn't anything to worry about but that didn't help.
  • Have stayed away from forums because of the anxiety but giving it a go now I'm through the other side. 
  • Hi CJ,

    I had the skin tag thing too, cost me a long time of not being diagnosed correctly. I'm so sorry for all the miserable side effects. There ARE some ointments you guys can take through radiation- is it Strata? Nothing here in the states.

    I'm glad your team is listening and getting you the meds you need, but so aggravated about the 'What have you got to be anxious about?' CANCER IS ANXIETY-PRODUCING.

    Glad you're here now.

    Hugs

    suz

  • Hi  ,

    Welcome to the Macmillan online community although I’m really sorry to hear of everything you’ve been through. 

    There are no hard or fast rules as to how an individual deals with something as devastating as a cancer diagnosis. The anxiety can be crippling!! 

    I’m surprised that your treating team didn’t offer you any creams to use during treatment to soothe your skin (nothing stops the burn but there’s definitely stuff to soothe them!) I was made aware not to use anything directly before a radiotherapy session but after, in between I used a heap of flaminal & QV cream.  

    I too had an external skin tag/polyp, it had been there for probably 2 years then all of a sudden it bled a tiny bit & suddenly ’mushroomed’ & changed shape, it was this that took me to the GP & things moved really quickly after that, referral to the lower colon team at local hospital, biopsy & 7 days later a diagnosis of anal cancer. 

    I hope now you’re here that you find this forum as supportive as I have over the years & not so anxiety inducing.

    Nicola

  • Hello CJ64

    I am so pleased that you have come here.  I totally understand your anxiety and some doctors, although they treat us, have no idea what a cancer diagnosis does to your head.  I am always surprised to read about the difference in various cancer departments, during treatment I had a constant supply of dressings and painkillers and I am so sorry that it took a threat from you not to return that eventually prompted them to give you pain relief.

    I do hope that you are feeling better now, and it's great news that you are in the clear.  Everyone on here understands even though some doctors don't!

    Irene xx

  • Hi what cream have any of you got for post treatment. I am 2 years post this Oct and at my appointment earlier this month the Dr said I've got scarring. When I wipe if I catch a certain area it's really painful and it feels like someone has poked me with something sharp. No heammoroids but it's very sensitive. 

    My bowels were so active until recently sometimes 3x a day now I've gone the other way which was normal for me but I take Movicol anyway if it's painful to go. Salt water bathing with a portable bidet really helped. 

    I read everything from my info pack before treatment and again recently about late side effects, leaky bum if I fart(am I allowed to say that?) Sometimes, very occasionally,  it feels very hot and wet and I've stained my PJs or undies and sometimes I get some mucus but reassured it's all perfectly normal. 

    I ring my CNS , who is lovely, when I have a question. My Oncologist said she was glad that id made good use of them. It was a relief to know it was ok as when I was diagnosed with cardiomyopathy the hospital nurse moaned at me phoning. Telling me, we can't keep bringing you up here. If I'd been allowed to drive I would have driven up there. When I got a community specialist nurse she was amazing, totally opposite. 

    I'm not very good with finding my way around things like this and may forget password Joy terrible memory so don't think I'm ignoring you. Took me 15 minutes to find the link in an email to log in then find my post Rolling eyesWinkJoy

     

  • Hi CJ,

    Oooooh the sharp thing doesn't sound right at all! Scarring shouldn't feel that way!

    I've occasionally had an....er.....productive fart and had to flee. Fortunately it's very rare. I'm a little over a year past treatment.

    So glad you don't have the moaning nurse any more! With a few notable exceptions, you guys seem to have more sympathetic and helpful ones on your side of the pond.

    My bowel movements have settled into something not too far from normalcy. I still take a great deal of care in the mornings, drinking just the right amount of coffee and making sure I don't get far from a bathroom until I'm pretty sure I've moved most everything out. I still get caught out sometimes, but thankfully it's been a while since I experienced an actual incident of incontinence.

    The cream I use is Miaderm, which works really well for me. I rarely go without. I have one called Calmoseptine, a very thick and sticky ointment, but I only use that if I'm super sore. But I think most of what you hve available in England is better.

    Suz

  • CJ64

    You can say what you want on here about bodily functions!  What is really coincidental is that this afternoon I was walking to pick up my granddaughter from nursery; I am normally fine after having at least two, if not three bowel movements in the morning.  But today I had a sudden great urgency and very luckily for me, I was passing a hospital so I walked right in, the receptionist asked if she could help but I was on a mission, I couldn't stop until I reached a loo and just in time too.  I had diarrhoea, not a clue why but it reminded me that things can still be precarious after fourteen months.

    Your scar tissue sounds really painful,  was diagnosed with, I think, fibrositis around the anus and she has found great relief from massaging the area with oil, Jaycee I hope you don't mind the tag as I couldn't find the post, perhaps you can help out?

    Other than that I use QV cream applied back to front down below after a shower in the morning and I find it very soothing.

    Oh that all the nurses were kind!

    Irene xx

  • Not at all Irene we are all on here to contribute to what has helped us along the way. I will say one thing though, I went to stay with my daughters family last week as my husband was away and my routine was completely out with diet and my morning care ritual. I should have known their diet is completely different from mine and my body just doesn’t like it. I became very constipated and when you are away from home you just don’t like complaining and I became very sore around the scar area so quickly when I was doing so well. I think this means we can never stop looking after our skin as it backfires on us. Before the flare up everything was great but slowly it is calming down. I don’t think the skin ever fully revives to what it was before. My fibrosis flared up into a size of a pea and was hard. Funny enough I had a catch up call from my hospital on Monday and my specialist nurse said she will pass this onto my nursing team. I have purchased so many creams and lotions and probably too many which just sit in my cabinet. The one I have been using is tamanu oil which I mix with a tiny bit of coconut oil and massage it around the anus. I also used to purchase a camomile balm all natural from Amazon which was soothing. You can also get tamanu in a balm formula which is ideal for when you are out and about. I usually have a early bowel movement around six in the morning and just after breakfast around 8am and usually fine for the rest of the day. When I need to go if it isn’t loose I can pretty much hold it longer now as when I get to the safety of the bathroom I wait until I can wait no longer tightening the pelvic floor but safe in the fact that I am just inches away from the escape hatch!  If you find something that works for you then stick with it. I am going to enquire about silicone gel which are supposed to reduce scars at my next consultation. I cannot use e45 or aloe Vera as they bring me up in a rash. Vaseline for sensitive skin is pretty good too.

  • Sorry Jaycee, fibrosis not fibrositis! x