Late effects

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Dear all -

I posted this in the other forum for radiotherapy and it was suggested I also post it here.  I know I am not alone in late effects but am wondering if one just soldiers on...  Its difficult to know!  I also don't want to frighten newcomers!

I had chemo/radiotherapy last year that completed in May for anal cancer T2 N1 so am now 8 months post treatment. I think I was fairly lucky in the way I came through it -  it was not a good experience but I think judging from what some people say I was lucky not to have extreme problems. My 6 month MRI showed no evidence of disease. Great - although I can't feel excited as I know I can never again take things for granted! 

I take Laxido pretty much daily as otherwise constipation causes painful toilet time but I range between diarrahoea on some days and acceptable kind of loose stools - better than constipation!!  I also have bladder leakage - not bad mind you but enough so that I need period pants or a pad. This is frustrating.  My wee is pretty much always dark - I wonder if I need to check that out, I get a little breathless at times and occasionally get a racing heart.  (some of this may not even be connected to radiotherapy - who knows??)   

I still feel fatigue on some days and now have started having an ache in my left hip/top of my leg that makes movement slower - so I often take paracetamol to help with that.  I have been referred to the 'late effects' clinic in Bath to assess.  I've also booked a GP appointment to check out the breathlessness.  I never know what is 'to be expected' what is 'something new' and different and not related to cancer treatment'. 

I understand that some people develop pelvic radiation disease sometimes following treatment - I've checked it all out - but from what I've read it all seems to be about 'managing' your effects.  I'd welcome anyone else's experiences/advice in all this!

Thanks all

Carole x

  • Hello Cranford

    I hope you do not mind me replying as my cancer was endometrial, however I did have pelvic radiotherapy- 25 sessions and I do still have some effects now. My treatments ended September 2022.

    I am sorry that you are still having effects and I can understand that they can limit what you feel you can do and cause a lot of worry. It is hard to decide sometimes between normal and expected side effects that some people unfortunately continue to experience, and the concerns of recurrence.

    You have done the right thing in seeking advice for your symptoms. I have not yet attended a Late effects clinic as at the moment I am on 12 weekly checks and managing the symptoms with support from the oncology nurses.

    With cancer treatments it is sometimes difficult to rule out what has caused what but I know that my body has changed since treatment and some of it is I feel accepting the new normal and being able to access support and monitoring for the ongoing symptoms.

    I still have fatigue but it has improved a lot over the last 3 months. I have found that a lot of it is pacing myself, keeping to a routine and not overdoing it. If I overdo it- physically or even emotionally/socially it can set me back for a few days. I went Christmas shopping with family this year for a few hours and it was too much. I had to keep sitting and felt worn out and achy. It took a few days to recover and feel able to move again. However a couple of months earlier I would not have attempted it. I still feel there are 2 types of fatigue for me- the general whole body fatigue which lingers from the chemo (I was told a good couple of years to feel myself again) and the achy fatigue around my pelvis/legs which lines up with my radiotherapy tattoos. Its a sort of muscular/bony ache if that makes sense.

    With bowels, my main effect was diarrhoea with frequency and urgency. Throughout the last year I have kept a chart with details of bowel movements- Bristol Stool chart and symptoms. I have also kept a food diary. Each time I have a check up we go through it. Diet has played a big part in getting me to a more normal and predictable pattern. I now have a traffic light list of foods- green- ok to eat, orange- small amounts ok and red- foods that cause symptoms. My green list is getting longer as I reintroduce foods. At 8 months post radiotherapy - the same as you- I still was having a lot of issues. I have problems with some dairy- I am now lactose intolerant and need to watch fibre intake. The main reason I have not gone to Late effects clinics/dietician is that these things are controlling symptoms. Eating at regular intervals is best and not skipping meals. If I go off routine then symptoms return and quickly. It has taken a long time but it is worth it- and it is I feel about controlling symptoms. The Late effects clinic will be able to help you do this but it would be no harm in starting to make a note as it helps them to know what is going on.

    I rarely need to take loperamide now but can on the hospital advice take it before going out if needed. Also being prepared with change of underwear, finding out where the toilets are and having a Macmillan toilet card can help you feel more in control. Your CNS should be able to get you one if you ask. I have never had an accident while out but being prepared takes away some of the anxiety and that in itself can cause a dodgy tummy.

    With the bladder effects, I would say I go more that I did and occasionally have some urgency. It's almost like my bladder is irritated. The late effects clinic can help with pelvic floor exercises. I sometimes get up in the night now to empty my bladder which I didn't before radiotherapy. But it is still manageable. You mention that your urine is dark and that needs assessing. It is worth getting any UTI ruled out but I wonder if you are drinking enough? Sometimes I would eat/drink less when I was having bad symptoms especially if I was going out and getting to the loo quickly may be an issue. Perhaps ask your GP

    With the breathlessness and racing heart then that is something that needs checking as soon as possible. I did go through stages of having palpitations ( I also had chemo) but mine would occur around the times of check ups and put down to the anxiety of it all. But chemo can cause issues such as these so it needs ruling out- although there may be more simple causes. 

    I found this organisation helpful so will pop a link for you.

    Pelvic Radiation Disease Association (prda.org.uk)

    I hope this helps a bit, It is about managing symptoms to a certain extent but I did find it wasn't until 1 year after my treatment ended that things did improve. At 8 months I was still having a lot of issues. It takes time to recover from the treatments and I hope that with support you won't be left with too many lingering effects.

    If there is anything you want to ask, then please do so. My treatments/journey is on my profile and you will be able to see them if you click on my name.

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Carole,

    I wish I could offer something useful, but there's no such thing as Late Effects Clinics here, and even my wonderful chemo doc looks baffled when I ask him about lingering after-effects. There's Cancer or No Cancer and the only acceptable response is to be grateful if it's No Cancer- which I am, but......

    Following this witn interest. 

    I had a surprise episode of incontinence last month which shook me badly. My sensible husband calmed me down with 'It's to be expected from time to time.'

    I'd really hoped the anal pain would cease, going on 2 years after treatment, but while it's much better, it's still frequent and occasionally awful. Stress brings it on.

    Like some old folks' Weather Knees, I guess. I've got Stress Butt!

    :) Suz

  • I had a surprise episode too - on Christmas morning.  I was up early as we were hosting Christmas and I didn't follow my usual routine...

    Commiserations Suz.

    Irene  xxx

  • Carole, I hear you.

    I have ongoing side effects, all of which I have flagged up with either my oncologist or my GP.  Anal stenosis, fatigue, aching hips, temperamental bowels to name a few.  I am waiting on a Dexa scan just to see the state of my hips, and I find the pain in walking and 'lead' legs the most debilitating of the various side effects.  I had physiotherapy and religiously did exercises for six months and unfortunately they didn't help at all.  The physio started to say it could be my age, but saw my face and shut up!  Prior to treatment I could walk 10-15 miles without any problems whatsoever.  With fatigue, the advice is to exercise, yes I do that too when I walk my dog but it is a real effort.

    I am very very glad I had the treatment, and that, touch wood I am clear.  But life has its challenges now.  In the past year, I have experienced occasional 'first bite' syndrome, really excruciating pain in the salivary glands when I first taste food.  My oncologist spoke to her colleagues as she had never heard of it happening after our particular kind of treatment and they hadn't either.  She did take it seriously but said they are less concerned as it isn't a regular occurrence and it could be nerve damage after chemo.

    I so enjoy life, but I confess to a constant hope that things will get just a little better!

    Irene xx

  • Hi Carole what a saga anal cancer late effects some of us are unfortunate to experience. I can remember when I was post treatment around where you are at now and remember the fluctuating loose bowels and constipation. Some good tips from Jane regarding the diet. I was referred to the dietitian at my local hospital who put me on the FODMAP diet. It was a game changer for me on how many times I had to go. I have to drink loads of water a day, over two litres or I find the first bowel movement in the morning seems to start and then stop! and on occasion I have to press around my anal area to ease it out. I think as my tumour was so near the sphincter that has been affected. Diet is a big one for me on controlling my bowels. I stopped taking movicol around five months and would add some physilium husk to my food but only a teaspoon. I used to walk for miles being a member of ramblers but the worry of incontinence stopped that. I don’t seem to be able to walk as far now but we do make a putt to go out every day walking my distance. Fatigue comes and goes and so does the odd ache around the pelvis but not as much. I did have to have surgery six months ago to remove a radiotherapy caused lump which was not very pleasant but I now no longer have painful bowel movements but I do on occasions feel sore when I have had a change of diet routine and over wiped. I think it is diet and the mind as it seems odd that I go to the toilet before we go out and when we walk back my brain seems to kick in and say to my anus you can start releasing now! I practice anal exercises regularly and that has helped enormously. I have never had to use my emergency bag yet and I am 28 months post treatment. As Jane has said regarding your other symptoms it good advice to check any symptoms you have with your team. I don’t think our bodies will ever go back to post treatment and my oncologist said to me you will have to adjust your routine to live the best you can. I hope you fine your best normal and you are early days yet so take heart it can improve in time.

  • Hi Irene, fingers crossed they do get better and wonder if your recent hospital visit has improved your stenosis. 

  • Hi Suz as I said in my post regarding my butt letting go when I am just about to get home I think my brain is not talking to my bowels. I’m fine as long as I’m not loose.

  • Unfortunately no, and I have been using the dilator.  I just have to make sure to have my daily Laxido which, although it is only a stool softener, can occasionally make me too loose.  And it is interesting what you say about the effect of walking, in the past couple of months I have found that I need to go again after my walk.  So I take precautions and carry a 'loo' card although last summer I had to resort to hiding in a clump of bushes in a common frequently used by walkers.  But I managed!  But (being graphic here) I find if I try to go to the loo before I go out, the act seems to start off the process but only moving what might be there but not all the way, so I don't get immediate results but it all happens when I am out!  It's all a juggling act, isn't it.

    Irene x

  • I'm right there with you, Irene. Little things, that may or may not be results of the treatment, but with no one tracking it here, how would I ever know? The aching hips, the thin skin, the endless tiredness.

    I'm grateful, so grateful, and also still want better.

    Hugs

    Suz

  • Thank you Jane - and thank you to all of you who have given your experiences - it is helpful as its a kind of no mans land you find yourself in - grateful its over and NED but wondering whether any little twinge is a result of what you've been through and whether its a 'to be expected' symptom!! I'm not one to rush to a doctor with any symptom - I kind of like to monitor it for a while. I really appreciate hearing your experiences as they help me to feel 'normal' if that makes sense!  This last week its felt like the radiotherapy has decided to bite me in the arse again - lol rather appropriate description haha. I had increased my fitness with walking so to suddenly get this hip pain is pretty worrying as it makes me feel old and useless! 

    Suz - how awful you don't have late effects clinics there.  Interesting you mention stress being a trigger too as I'm sure that contributes. 

    Irene - not heard of 'first bite' before - I really sympathise as that must be awful wondering if it will happen when you eat!

    And Jaycee - I hear what you say about drinking water - I need to consciously drink more I think.

    Carole x