Living with and beyond cancer
Other long-term physical effects
In addition to the long-term physical impacts already described some people we spoke with mentioned being affected by less common long-term side effects or complications of treatment.
Some people who had radiotherapy said that their skin in the treated area was still dry, sore or tender 5 or more years afterwards. A man who had radiotherapy for breast cancer said that he didn’t expose the affected skin on his chest to the sun. A man treated for lymphoma said that his hair had not grown back on the treated skin on his neck.
Les had radiotherapy for penile cancer and 14 years on still needs to use moisturiser daily on the affected skin; he developed a rash after 11 years, which may also have been due to the radiotherapy.
Les had radiotherapy for penile cancer and 14 years on still needs to use moisturiser daily on the affected skin; he developed a rash after 11 years, which may also have been due to the radiotherapy.
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And I was told at the time when I had the radiotherapy that I had to look after the skin because it would be damaged with radiation, which is fair enough, and I had to use, like, baby soaps and things like that so it didn’t irritate it. And I thought it was just at that time because during the five years of the treatment, well not the treatment but five years of going back for the check-ups and stuff it had basically healed up. It still looks a bit of a mess now, it’s as if it’s been trapped in a car door but it works, it’s all fine and dandy. But I wasn’t sort of given any sort of advice on the after-care after, whereas, like, now I have to put moisturiser on sort of every day because the radiation damage is still there, it’s still progressing, it’s still happening, and this is, like, fourteen years on, which I wasn’t told anything about at the time. And that’s where are we up to now, I’d just been discharged from the hospital and I basically stopped, you know, looking after it, if you like, I just got on with my life and I was applying some creams now and again when I could remember or whatever. Or if it did get particularly dry because sometimes the skin on it really dries out and gets very flaky.
But then I’d not really been having any problems for quite a while and it was probably eleven, twelve years after all the treatment I’d noticed these red dots, really bright cherry red dots that were coming up. I know I had been told by the cancer place, ‘Any problems us a ring’, which they were fine, you know, no problems at all.
I rang them up, said I’ve got this problem. ‘Come and see us’, and they saw it, and well, I don’t think they knew what it was, and said they were just going to do a biopsy and see what these things were, and cut a little piece out. But the frightening bit about that visit was the surgeon that I saw was quite adamant that if it was cancer this time, he said ‘you won’t get the, we don’t do radiotherapy treatment like you had last time, it’ll be radical surgery, reconstruction’, and you just hear all this, they’re going to cut it off! And that was really worrying. That’s it, you go away, you wait for your appointment to go in and do the biopsy and then it’s a matter of the, fortunately the results of the biopsy, whether it was just radiation damage, years later that’s still happening, it’s still changing. And as I say, I’m still seeing him now.
Graft versus host disease (GvHD)
Graft versus host disease (GvHD) can ccur after having a stem cell transplant from a donor and is caused by the donor’s immune system attacking the recipient’s body. It can affect various parts of the body but commonly affects the skin. A woman who had a stem cell transplant as treatment for leukaemia developed a skin reaction and 7 years on still had bouts of eczema when stressed or tired that she attributed to GvHD. Her mouth and gut lining were also inflamed by the chemotherapy, and she took medication to counter stomach acidity. Other people also said they still suffered from sore gums or a dry mouth; the latter can be caused by chemotherapy damaging the salivary glands. Nails can also be damaged or fall off as a result of chemotherapy, and a woman who had been treated for lymphoma said that one of her toenails was growing back with a split in it.
Circulatory problems
Circulatory problems affected other people. A few said that blood vessels had broken down as a side effect of radiotherapy. A woman treated for lymphoma said that her veins that had been repeatedly used for insertion of needles and cannulae were badly damaged. Other people complained of swelling of feet, legs or ankles, or of cramp, and a man treated for testicular cancer said he had poor circulation in his extremities so that his fingers went white when handling cold objects. One man wondered whether his coronary artery disease was related to his earlier lymphoma treatment. People with certain types of cancer, such as acute myeloid leukaemia, or taking certain hormone therapies are at higher-than-normal risk of developing a deep vein thrombosis (blood clotting).
Radiotherapy for lung cancer 6 years ago has damaged the blood vessels in his lung and he coughs up black sediment as a result.
Radiotherapy for lung cancer 6 years ago has damaged the blood vessels in his lung and he coughs up black sediment as a result.
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I do find from time to time that I have, even though now that they've told me that I'm in a reasonable shape and things are clear as far as the cancer is concerned, I do occasionally cough up some black sediment from the lung. And I have spoken to the oncologist about this and what he has said was due to the radical radiotherapy there are very small blood vessels that attempt to regrow and what happens they don't regrow, they shrivel, and of course they break away and that's the little black pieces that come up. It's just like little bits of black but it isn't anything to worry about at the moment.
Ian has had two deep vein thromboses since his leukaemia so has to take warfarin for the rest of his life to thin his blood to avoid further clots.
Ian has had two deep vein thromboses since his leukaemia so has to take warfarin for the rest of his life to thin his blood to avoid further clots.
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I was admitted to hospital a Monday a few months ago with a DVT in my right leg. On that morning I was admitted I was at the haematology specialist’s and I told him that I wasn’t feeling very well. I told him I was thinking of changing jobs because I’d been a bit, struggling with it all, and, ‘Your blood’s fine.’ That’s what I was told. ‘Oh well your blood’s fine.’ So I said, ‘Okay, thank you.’ And we left it at that.
And that evening I was actually admitted with a DVT because my leg had swollen.
And I think on that day when he said, ‘Oh your blood is fine’, I should have said, ‘Yeah but my leg hurts as well.’ I didn’t. I just said, ‘Okay thank you.’ And off I went.
So you know it’s, and I wish I could change that a bit and be a bit more accurate. Maybe I need to plan a bit before I go in to see them and say this, that and the other, because I forget and I’m gone and oh, it’s afterwards and I think I should have said this and that and the other.
So what’s it like having a DVT?
This second one shot into my lungs, so it actually got into my lungs. The first one just stayed in my leg, quite a big one, painful because my feet are numb from my treatment. The soles of my feet are actually numb.
Are they?
Yeah. Yeah they’re just totally numb, so I deal with that, and now on top of that I have two swollen ankles and they tend to swell, I need to keep them up if I’m at home, and keep active on them. At the time it’s really painful and it swells up and it’s quite a lot of pain in terms of pain, but in comparison to the pain that I went through with the leukaemia and the treatment it’s, if you call that a ten, it’s a five.
Okay.
Still very, very uncomfortable.
And so I had to have Clexane injections again into my stomach, so that was revisiting an old friend for a week at [my local hospital] and now I’m on warfarin for life, so I’m going to clinics every week, every two weeks to check on my blood. But hopefully that’s, you know, that’s where I am.
So warfarin is one pill a day is it or…?
One, yes it’s different doses. They haven’t quite got me right yet and I take, so they take my blood and they give me the dose for the next week. And it’s just fluctuating a bit, they’re trying to get me to a therapeutic level and that’s, as we get to that hopefully the tests will become less and less and they reckon it could be, you know, every couple of months, three months or whatever, which will be fine. I just need to be patient with that.
So being self-employed gives me the opportunity to go and give blood that, like I work thirty hours instead of thirty-seven now. I think thirty-seven is too much for me, to be honest with you.
So thirty hours seems to do me fine. Yeah.
Do you mind taking pills every day of your life?
I forget sometimes, not now, when I was younger and hard, a bit hard-headed, just a few years ago I’d have said, ‘Oh God no.’ But I very quickly adapted to it and I take them tea-time, into a routine so if I forget, it’s very rare. It’s happened once or twice but it’s part of my routine of taking them at tea-time. And I think by doing it like that it’s not to
Breathlessness
Breathlessness was common among people who had survived 5 or more years after lung cancer treatment. This could either be due to having had part or the whole of a lung removed, damage from radiotherapy, or the effects of the condition itself. Breathlessness restricted the amount of activity that these people could do and meant they had to rest frequently. Most found using an inhaler helpful and some also did breathing exercises. A woman treated solely by chemotherapy said she had not been given any advice or exercises for coping with breathlessness.
Pain and breathlessness stop him sleeping on his right side after having a cancer removed from his lung; he finds that using a nebuliser, doing breathing exercises and going rambling all help.
Pain and breathlessness stop him sleeping on his right side after having a cancer removed from his lung; he finds that using a nebuliser, doing breathing exercises and going rambling all help.
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And I got a lot of pain there for a long time, couldn’t sleep on that side.
Does that still bother you now?
It still bothers me, yeah, because I find if I’m lying on my right side, there’s one side where it affects my breathing, it’s like I’m cutting the oxygen off, so you know.
Do you have to take any medication for that?
No, no, painkillers maybe but I don’t take nothing really. I do occasionally have to go and get an inhaler because I find, I’m OK, my breathing’s fine, perfect really but sometimes if I do something sudden it leaves me gasping and a bit panicky at times, you know.
Have you got any recommendations for people to help with their breathing?
Yeah, again funny, when I was diagnosed and after I came out of hospital I’d done everything I could, I thought, to try and help myself. I did watch my diet somewhat and I joined a yoga club, like, two months afterwards. Anyway, I started doing light exercises and plenty of breathing and relaxing; I was trying to get my head together. I also had gone out walking all the time, walked around the park first a little bit and then a bit further like that, and then eventually I joined a rambling club, which I was able to do, I struggled with that but I kept that up and I’ve still done that now, and I’ve climbed mountain after mountain since.
That’s good. Are there any particular breathing exercises you do?
I do the alternate muscle breathing, I used to do that all the time, and then laying in what’s called the ‘corpse position’.
The what position?
Corpse position, where you lay on the floor and do breathing from the diaphragm. Breathing exercises, you can get them in books from the library, there’s even pamphlets, Roy Castle gave out leaflets on that, on breathing exercises.
For other people, could you just say a little bit more about breathing exercises and what they are please, what they entail?
Well breathing exercise, basically I believe it’s in your mind, you know, they can help you relax, your concentration, it’ll slow you down. And I just try to put as much air back into my body. And by doing, even doing the walking, breathing while you’re walking as well. Even when you’re sitting, eating, whatever you’re doing you can still breathe, breath is life.
Can you demonstrate one breathing exercise sitting there or not?
Yeah I can, a breathing exercise is basically if you get yourself in a correct position, not so much a sloping, you need a hard chair, a higher chair, hands by your side. Just close your eyes gently and just through your nose nice and gentle, that’s when your stomach fills up, not just your chest; and then when you’ve reached that just let it back out through your nose again. You can see your stomach swelling and then back out again, and I think you’ll find your whole body starts to relax and you start to think a bit more clearly. And it really helps you to cope with…
And you’ve found that helpful?
Yes, certainly.
So you try to feel good?
Yeah, all the positions, I even manage to stand on my head but I’ve stopped that because of the pains in my neck. But I still do that and practice with my wife, and just some gentle stretching exercises combined with the breathing exercises and
Kidney damage
Some chemotherapy drugs can damage kidney function. Usually, the effects are mild and don’t cause symptoms, so people with kidney damage only need regular monitoring. However, very occasionally the problem can be severe. A woman whose ovarian cancer recurred after initial treatment had cisplatin chemotherapy administered directly into her abdominal cavity, which caused kidney failure, and she needed haemo-dialysis 3 times a week.
Cisplatin chemotherapy for testicular cancer reduced his kidney function by 30 percent; he is checked every 6 months and there has so far been no further deterioration.
Cisplatin chemotherapy for testicular cancer reduced his kidney function by 30 percent; he is checked every 6 months and there has so far been no further deterioration.
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And as far as the kidneys are concerned I was left with kidney impairment. So I'm still treated by [hospital] on a 6 monthly basis now and it's a monitoring situation really. I've got about 70% kidney functionality.
Could you say what's happened to your kidneys long term please?
Yes, so because of the effects of the cisplatin which, as I say, you know, they were doing kidney tests all the time and it was the kidney test that told them that, you know, to cut the cisplatin out. So you are looked after and monitored. The cisplatin left me with kidney impairment, so I'm now treated by a local hospital for, every 6 months I go for check-ups to make sure my kidneys are okay. And, you know, for the past 4 years since I started seeing them the kidneys have been stable, there's been no deterioration at all in the kidney functionality.
The only slight problem that I have that you could say was kidney related, now I have high creatinine levels but certainly nothing to worry about. And occasionally I might need to, you know, maybe a couple of times a week, 3 times a week I might need to get up during the night to pass water. I asked them about this last time I was there, which was a couple of months ago, and they said it's potentially a side effect of kidney impairment, the fact that you can't process your urine properly. But again, you know, the fact is I'm here and I wouldn't have been, you know, without this treatment.
Bone density loss
Loss of bone density is a natural part of ageing, but certain cancer treatments can also have this effect, causing weakening of the bones (osteoporosis) that can lead to fractures. Fractures were the first sign of osteoporosis in some people we spoke with who had taken hormone therapy for breast or prostate cancer; they had since been given medication to try to strengthen their bones. A man treated for lymphoma said his bone loss was due to taking steroids as part of his treatment.
Alan's hip started hurting and an x-ray showed it was fractured, so he had a hip replacement operation; he believes that radiotherapy he had for colorectal cancer must have damaged his bones.
Alan's hip started hurting and an x-ray showed it was fractured, so he had a hip replacement operation; he believes that radiotherapy he had for colorectal cancer must have damaged his bones.
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So yeah, I gradually got better and started to go back to the gym I had, and then my hip started to hurt and I went to the doctor. And initially she said, “Oh, you’ve been overdoing it at the gym, soft tissue.” And it got worse and worse. And I was still married at this point and we went on holiday, only up to the Derbyshire Dales, and I couldn’t walk. I bought a walking stick. Cor, dear me.
Still couldn’t walk about much. Before we came home I had to buy another walking stick, so I was on two sticks and I think I’d been to the doctor before then and he’d given me painkillers. Anyway, I went back to the doctor, we came home, I went back and I said, “There is something wrong. I can feel it grinding.” So he said, “All right. We’ll make an appointment for you to go down to the hospital here to be x-rayed.” So I went down and had an x-ray and I think it was the following day he phoned me up. He said, “There’s a bed waiting for you in the [local hospital].” I said, “What the hell is wrong?” He said, “Your hip is fractured.” And went down there and they initially thought the cancer had recurred and gone into the bone. Fortunately, it hadn’t. And I had to have a complete hip replacement. I can’t remember how long I was in there. Must have been, I don’t know, a week or something. I can’t remember. Whatever, anyway.
And so that was another set-back and you think, “ God, you know, what’s going to happen next?” So I had the hip and the left leg is now that much longer than my right leg and they said did I want an insole and I said, “No, I can’t. I’d feel like a spastic”, you know. I thought, “It’s not me to be like that.” I wish I’d had one because that’s what I’m going to see the doctor for tonight because the hip is playing me up. I think over the years it’s put a lot of pressure on it.
So did they say that the hip problem was directly because of the radiotherapy?
Yeah. Apparently radiotherapy can weaken the bones, and they said that’s what must have happened. They said, “Have you had a fall?” I said, “No, I haven’t had a fall, you know, or anything.” I’d been going to the gym and I can only imagine it weakened it, they think it weakened it, put a hairline crack in it, going to the gym on the treader on the treader and the jarring, because he said to me, “No.” The doctor at the [local hospital], can’t remember his name, I think he was a Scandinavian. He was a nice bloke. He said, “No more running.” He said, “It’s the jarring up the leg all the time, which would do it, so no more running. Swimming, walking, you know, do things.” But yeah, so the hip is there. I can walk or run forward. I’m okay going forward. If I twist about on it plays, you know, but, you know, apart from that I’m good again.
Diabetes
Diabetes was another unwanted outcome of cancer or its treatment for some people. Diabetes is a condition in which sugars are not metabolised properly by the body because the pancreas doesn’t produce enough insulin, or the insulin doesn’t work properly. A man who had part of his pancreas removed as treatment for pancreatic cancer later developed early signs of diabetes as a result and controlled it through diet.
Marie developed diabetes after having high doses of steroids with chemotherapy for chronic lymphocytic leukaemia; after putting herself on a strict diet and losing weight she no longer had seizures.
Marie developed diabetes after having high doses of steroids with chemotherapy for chronic lymphocytic leukaemia; after putting herself on a strict diet and losing weight she no longer had seizures.
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I then had a problem with diabetes, which I didn’t know I had. I started having seizures in the house. It was confirmed that I was a diabetic and it could have been, they thought, due to very high doses of steroids. I was then given treatment for diabetes. The consultant at the hospital for diabetes informed me that I’d have to be very careful, not only did I have diabetes but with leukaemia as well. I made up my mind that that was not going to get me down and I was going to conquer the diabetes because of the difficulties I was having with leukaemia. I kept a strict diet and it’s not been a bother. I then couldn’t drive for a year. That depressed me, and I was having to have chlorambucil again. It still worked and I was doing fine on it.
So do you think the steroids and the effect they had on you caused the diabetes?
Well, they said it could be a contributing factor but they were not sure. But of course, because of the steroids I gained weight anyway, which is another factor for diabetes, so they’re not very sure.
But I think you told me off camera you’d managed to conquer your diabetes.
Yes.
So you’re not taking any medication any more for that.
No.
Brilliant, and you lost all the weight.
Yes.
And you did that through diet and exercise?
Yes.
That’s really good. Well done.
Yes, basically just keeping to a very, very strict diet. Eating small amounts, lots of vegetables and fruit. I just changed my eating habits. In fact I found now that I went out to a restaurant the other day to celebrate my white count coming down and they did a jacket potato but they brought me chips and I found I couldn’t eat them. It’s so long that I’ve eaten that kind of rubbish that I just couldn’t eat them. So my lifestyle changed completely.
Other long-term effects of cancer and treatment
Weight gain is a common side effect of steroid treatment, and several people we spoke to said their weight gain was due to their cancer treatment. Other long-term physical symptoms that people attributed to their cancer or its treatment included: eyesight problems, including cataracts that can occur after a stem cell transplant; underactive thyroid; hot sweats not associated with hormone therapy; forgetfulness persisting five years after having chemotherapy; lumps on the hands; and a sore arm but with no associated build-up of lymph fluid (lymphoedema), a common complication of breast cancer treatment.
A few people also experienced unexpected and rare complications from their cancer treatment. A woman with ovarian cancer who needed a tube inserting into her windpipe in an emergency had one of her vocal cords damaged by the procedure. She also needed a separate operation to clear a bowel blockage. A woman who had surgery to remove colorectal cancer later needed several more operations on her abdomen to deal with a haemorrhage, an abscess and hernias. A woman who had radiotherapy for cervical cancer needed an operation six years later to drain fluid that had built up in her uterus.
Last reviewed: January 2025.
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