Living with and beyond cancer
Living with recurrent or advanced cancer
The primary aim of treatment for cancer is to cure it. Unfortunately this is not always possible, in which case doctors aim to achieve remission (where no signs of the disease can be detected), control its spread, or relieve its symptoms. These different aims depend on how big the cancer is at diagnosis and whether it has spread to other parts of the body. In general the earlier cancer is diagnosed the more successful treatment is likely to be.
Some types of cancer are typically diagnosed at an advanced stage when curative treatment is unlikely to be successful. Others are currently incurable and managed with regular or continuous treatment (see ‘Living with chronic or slow growing cancers of the blood’). Even when initial treatment achieves remission the cancer may recur later in the same place or elsewhere in the body. The likelihood of recurrence varies between different types of cancer. Some people believe that if cancer returns they will die, but this isn’t necessarily true, treatment for a recurrence can often achieve further remission and some people experience multiple recurrences and remissions.
Some types of cancer are typically diagnosed at an advanced stage when curative treatment is unlikely to be successful. Others are currently incurable and managed with regular or continuous treatment (see ‘Living with chronic or slow growing cancers of the blood’). Even when initial treatment achieves remission the cancer may recur later in the same place or elsewhere in the body. The likelihood of recurrence varies between different types of cancer. Some people believe that if cancer returns they will die, but this isn’t necessarily true, treatment for a recurrence can often achieve further remission and some people experience multiple recurrences and remissions.
Several people we spoke to had experienced a recurrence of their cancer between 11 months and 10 years after their original diagnosis. Some people had more than one recurrence, and said that they had managed to enjoy life in between episodes of illness and treatment.
A man had been shocked when he developed cancer in his lungs four years after his pancreatic cancer diagnosis, but said that it hadn’t been as traumatic as the first time. Barry said he never thought his penile cancer would recur after having treatment when in his 50s, but when it recurred ten years later he said the prospect of having his entire penis removed was far less devastating than it would have been before and he would rather be alive without a penis than dead.
Sometimes a recurrence is detected by a blood test or scan conducted as part of routine follow-up before the person is aware of symptoms. In other cases, patients present their symptoms at or between routine check-ups. Sometimes the symptoms are the same as those experienced before the original cancer diagnosis, so are easily recognised, or they may be different.
During her remission from ovarian cancer she had regular blood tests for the tumour marker CA125; a rise in its level indicated that the cancer had returned, so she was given chemotherapy.
During her remission from ovarian cancer she had regular blood tests for the tumour marker CA125; a rise in its level indicated that the cancer had returned, so she was given chemotherapy.
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It was a bit of a shock when the cancer came back again, because I was on cloud nine. I thought that was it, I’d cracked it, and I’d gone so long that, you know, it couldn’t possibly come back, so again that feeling of denial crept in.
How did they know it came back? What was the sign?
What was the signs? Right, yes of course, I mean during the period of remission the hospital monitors how the cancer is behaving by giving CA125 tests, and we got to the stage when we had gone from one month, two months, three months, four months in between tests, and that’s when it came back, when we had just got about as far as four months.
The count went up and then we had to sort of look to see what sort of chemotherapy to have, and again I opted to go on the trial, the ICON4 trial. And with that one I was given cisplatin simply because with the carboplatin I’d had the beginnings of an anaphylactic shock the time before when they had tried to give me an extra one, so I went into hospital each time and had cisplatin, which I was given on the ward.
She usually experienced the same symptoms whenever her ovarian cancer came back, so she could alert her doctors.
She usually experienced the same symptoms whenever her ovarian cancer came back, so she could alert her doctors.
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And when your tumour came back each time you said you knew before your doctors knew that it was coming back. Can you tell me how you knew, what were the clues?
Oh the same feeling of heaviness, and not inability to move your bowel, but the feeling that you need to move your bowel but the muscles aren’t obeying your brain. And sometimes pain. But mostly that, that almost indescribable feeling really of thinking, “Oh-oh”, you know, not like a pain and not having felt ill, but that was the first sign on most of the occasions, not all of them but most of them.
After feeling disorientated when flying he went to his GP and discovered that his lymphoma had recurred after 8 years in remission; with hindsight he recognised that there had been other symptoms.
After feeling disorientated when flying he went to his GP and discovered that his lymphoma had recurred after 8 years in remission; with hindsight he recognised that there had been other symptoms.
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And the treatment was successful at the time, I was in remission, I was in remission for eight years, and very disappointingly, and also quite devastatingly, I relapsed in August, yeah August 2000. Stage 4b this time, absolutely everywhere, and that was a massive shock. It was, I was married at this stage, I was out of the military, out of the military and in commercial aviation, so my life had moved on quite considerably since that time, and also the disease had really ripped into me and I hadn’t really realised it, but when I look back at the symptoms it all fell into place when I was diagnosed. Subtle things like losing weight that I thought, “Well I’m just getting fit”, because I was doing a lot of exercise at the time, but what it was actually I was eating like a Trojan and it was, nothing was, I wasn’t putting weight on, it was quite a, I don’t know, it was a subtle thing initially. And then I realised that I wasn’t feeling well, I was feeling tired, I was feeling listless. I also started to get the occasional night sweat. And when I pieced everything together in a big pot, so to speak, it then pointed at the disease again.
But it took, I was actually flying at the time when I thought I’d better go and see the doctor. I was descending into an airfield in Turkey, and we were going through cloud, the lights were flashing against the cloud, as we descend through the cloud, and I got disorientated and in nearly twenty years of, well twenty years of flying I’d never been disorientated in my life, not in the way that I was experiencing anyway. So it was a bit disconcerting. I spoke to the other pilot and told him that I was experiencing this disorientation, and it was fine, it wasn’t dangerous, I just felt slightly off. So I just said, “Well I’m working through it, I’m still on instruments and everything’s fine.
We descended, we landed, no problem whatsoever. Now if it had got worse I would’ve just handed control over, but I didn’t think anything much of it. I had a little bit of stomach pain at the time and I just thought, you know, “It could be airline food or something”. But that was starting to hurt, and when I got back I went into the simulator for another bit of training and then I got similar disorientation again with some of the lights in the simulator and the different visual cues that I had, I got disorientated again, I felt funny, I felt like I was getting a sort of fluey type sort of feeling as well, and just everything I thought, all the other things combined I just thought, “Oh well I’ll go and see the doctor and see what’s going on”. And I had a little doubt in my mind whether this had come back again.
So then that was it. I went to the doctor, he actually found a lump in my shoulder area which I hadn’t even noticed. And they whipped that out, did a biopsy and it was the disease again. Also the scan showed it everywhere, absolutely everywhere' it was in my liver and my spleen, not in my lungs that time, subsequently I did discover it in my lungs, but all through my lymph nodes throughout the whole, everywhere above and below the diaphragm, so it was quite extensive disease.
And started the treatment, and that was it really, I just kicked off on, in fact they initially diagnosed me with having non-Hodgkin’s because the type of Hodgkin’s that I had, I think it was, it was a type that could be quite easily confused with non-Hodgkin’s, so lymphocytic, histiocytic, something like that, it was. I started getting treatment for non-Hodgkin’s first of all, and they stopped that because a very renowned professor looked at my slide again and looked at the pathology of the biopsy and said, “Actually no it&rsq
It is not always easy for doctors to know whether symptoms presented to them are due to a recurrence of the cancer or to something else. A woman who experienced vaginal bleeding said her doctors had not at first suspected a recurrence of her ovarian cancer. When a man who’d had lymphoma developed a shoulder pain his GP attributed it to a trapped nerve. A woman developed a different type of leukaemia from the original one she had and it took her doctors a while to work out what was happening. Some leukaemias and lymphomas can change over time, and a woman whose non-Hodgkin’s lymphoma had originally been slow growing had a recurrence of a more aggressive type.
David's symptoms had been dismissed by his doctors for a year before a recurrence of his pancreatic cancer was finally confirmed on a scan.
David's symptoms had been dismissed by his doctors for a year before a recurrence of his pancreatic cancer was finally confirmed on a scan.
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December 2006, as I say, for the very first time I can remember driving the car back from the base training, and just felt nauseous, didn’t want my tea. I didn’t want to eat which, again, for a guy that loved food, was out of character.
Went through the trip, came back, I remember had the Christmas, I remember speaking to my wife, saying that things aren’t right here, and I got a little bit upset because, again, I think I felt possibly that there was a reoccurrence of the illness. Straight after Christmas got in contact with the specialist hospital and had an appointment.
They booked a CT scan; the scan didn’t show anything. The blood tumour marker, the 19-9, which is the cancer marker for pancreatic cancer, didn’t show anything.
And then I spent well over a year going back to the hospital saying I don’t feel well. I started to get terrible diarrhoea, at that time it was diarrhoea where very little notice from the feeling of needing to go to the toilet to going to the toilet would be sometimes a minute, two minutes. I couldn’t get to work very well because sometimes I’d need the toilet on the way to work. And then literally I’d have to find different toilets on the way, so that if I did need to go I could divert.
And didn’t, well I wasn’t happy really. Losing weight, every time I went back to the hospital I was losing weight at quite a dramatic rate and saying to the hospital, “There will come a point where I can’t lose much more weight”.
“It will become critical”. Luckily, because I was a big guy, there was quite a bit to go. I mean now I’m nine and a half stone.
Eventually we decided to go private. So I went to the local hospital, back to the original physician that I saw who had given me an indicator of what he thought it was. Saw him. He ran a series of tests and did a CT scan.
And then out of the blue a letter arrived from the oncology unit at the local hospital for an appointment. I went to that appointment, and again, you know when you’re sat in an oncology department waiting to see a doctor that there’s only one thing that they’re going to tell you.
I went to see the doctor, and he said there was a re-occurrence of the disease.
What was your reaction to getting that news?
Relief really, because for a year I’d been sort of saying, “Look, there’s something not right. I’m losing weight, I’ve got nausea, I’ve got diarrhoea”. And again, at one point I even went to my local GP because I didn’t know where to turn to. No-one was sort of, seemed to be listening to me. And my local doctor basically sort of more politely offered me psychiatric care. Is that the right word? Counselling? Holistic, an holistic approach, “Maybe it’s in your mind, and its mind over matter”. And that just, ah, I was, didn’t openly say it but I was absolutely fuming.
Because in my mind I knew it was there, and I think, oh well this is my seventh year, I’m a seven year survivor, and I think one of the reasons why I’ve been here so long as I seem to present symptoms very, very quickly. Like when the original tumour came, it was a very small tumour which blocked the bile duct, which caused the jaundice which then flagged up the tumour.
While having mild chemotherapy for slow growing lymphoma a new aggressive tumour appeared in her groin; an operation to remove it was delayed when fluid built up in her lungs.
While having mild chemotherapy for slow growing lymphoma a new aggressive tumour appeared in her groin; an operation to remove it was delayed when fluid built up in her lungs.
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Anyway when I was going back to be monitored regularly because of the chemotherapy tablets I was taking, a little tumour in my groin was looking just a bit bigger than it perhaps should have been. I’d say it was about the size of a Malteser, and that was enough for the surgeon to think, well it could be a high grade lymphoma, but to be on the safe side they sent me to a surgeon to do a biopsy. And that was fixed for a bit less than three weeks later. And in that three weeks the tumour that started off as the size of a Malteser grew to the size of a cowpat. It grew absolutely phenomenally, and I thought, “Oh dear, should I get in touch with them and tell them?” And I thought, “I don’t want to be a scaredycat”, and I know that one week in the life of a tumour is not a long time, which in fact is almost true almost every time, but in my case it was a bad idea because I was due to go in on the Tuesday for day surgery to remove this, it had been a little tumour, and on the Saturday night and the Sunday night I’d found, when I lay down to go to sleep, I couldn’t breathe properly, I had to sit up. This seemed to me very funny. I’m asthmatic, so I took a bit of extra asthma medicine; that made no difference and it didn’t seem like asthma anyway.
So I was very puzzled by this, and on Monday morning, the day before the due date of the biopsy anyway, I rang the registrar at the hospital, who said, “We’ve got a bed, come on in”. So I came on in, went on the bus carrying a little holdall, slowed down a bit by my breathing. And it turned out that I had something - they recognised this straight away - called pleural effusions. And that is, normally your lungs aren’t attached to your rib cage but they abut closely, there’s no spare space. Well there’s a minute amount of space and that’s normally washed through with lymphatic fluid that comes in at one end and is drained off at the other. And what sometimes happens in late cancer is that the drainage duct that siphons it off gets blocked with a tumour, and when that happens - or partially blocked - fluid builds up and your lungs can’t expand. And so they drained my pleural effusion.
And by then the tumour, I suppose it would probably have been about that big, but because it was in my groin and I spent a lot of time sitting down, it was like a cowpat with a fold in it. And it’s, you know, you couldn’t have worn tight fitting clothes, it would have been too visible. Anyway if I’d gone a week early I’d have saved all the pleural effusion and it might have made an enormous difference to the whole of the following story. But anyway, I didn’t, and they then had an argument between the surgeon and the oncologists about how much they’d take out. Because the surgeons, they wanted me to start chemotherapy as soon as possible, and that meant making the smallest operation they could so that the healing was minimised. But in the event the surgeons who took out, were going to just take out a bit of the tumour, took it all out because it had liquified and died, the cells had died in the middle, so it was a bit of a mess.
The same kinds of tests are used to diagnose potential recurrences as for the original cancer, such as blood tests, scans, or surgical removal of part (biopsy) or the whole of the tumour. Occasionally investigations are unsuccessful or cause complications. A woman whose ovarian cancer recurred for the second time had a tube with a camera on the end inserted through her abdominal wall (laparoscopy) to look at her abdominal organs; unfortunately her bowel was temporarily damaged by the procedure. When a man developed cancer in his lungs after pancreatic cancer his doctors attempted to look inside his lungs with a bronchoscope twice without success.
A scan showed that the pain in his shoulder was due to a recurrence of lymphoma that was wrapped around a neck vertebra; he had an operation to biopsy the tumour and remove the vertebra.
A scan showed that the pain in his shoulder was due to a recurrence of lymphoma that was wrapped around a neck vertebra; he had an operation to biopsy the tumour and remove the vertebra.
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However in 2000 I started to suffer pain in my right arm and started to lose use of it, not entirely, but it was becoming difficult to use it, and it was getting steadily worse. Initially it was assumed to be some kind of trapped nerve in my neck. I was referred for physiotherapy treatment, of which I had about five sessions, and at that the physio referred me back to the GP with the suggestion I should see a surgeon, which I duly did.
Again, there were in this case an MRI scan, and he confirmed two or three days later that in fact lymphoma had returned, and in this case at the top of my spine. He recommended a laminectomy to remove one of the vertebrae, having had some discussion with the consultant haematologist who’d treated me in 97, the intention was to remove one of the vertebrae but also to take a biopsy, because until the consultant haematologist was clear exactly what form of lymphoma I had, he wouldn’t be able to recommend appropriate treatment.
So again, I went through surgery and spent a week or so in hospital, coming back out and recovering from the laminectomy. The whole issue became very complicated because I acquired an infection in the spine/back as a result of the surgery. And as you can understand, the surgeon wanted to cure the infection, the haematologist was keen to try and deal with the lymphoma, so I think there was some kind of dispute between the two at one stage. However, the decision was taken to start with chemotherapy and at the same time start treatment with some specialist infection treatment, which I understand latterly was a form of MRSA, and it did take probably the best part of six months to get rid of the infection that was eating down my spine.
Yes, so was it that the lymphoma had actually got into the bone, or was it affecting the lymph system around your vertebrae? Because I don’t really understand why they took a vertebra out?
I can’t say it was ever adequately explained to me. I understood the tumours were around the vertebrae.
Around it, yes that would make more sense to me.
I mean certainly the consultant haematologist wanted a biopsy taken, whether that formed part of it I don’t know.
Mm, so they actually took out a whole vertebra in your spine.
One, yes.
That sounds like pretty serious surgery?
Yes, because nowadays you don’t spend so long in hospital recovering, do you? But I was in for a week, but it took a lot longer just to heal, and the infection complicated life seriously, yeah.
This was the MRSA that you had?
Apparently so.
The same types of treatments are used for recurrences as for the original cancer and will depend on the type of cancer and where it has recurred. Surgery is often the first treatment given for ovarian cancer but one woman we spoke to only had a hysterectomy when her disease recurred the second time because of confusion about whether she’d had already had this done. Several women whose ovarian cancer had recurred had operations to bypass or remove bowel blockages. A man who had been in remission from testicular cancer for two years had a lump removed from his neck, and a woman had a lymphoma removed from her leg.
Michael's breast cancer recurred in the opposite breast and he had the lump and two lymph nodes removed; having retired since his original mastectomy he found his recovery far easier this time.
Michael's breast cancer recurred in the opposite breast and he had the lump and two lymph nodes removed; having retired since his original mastectomy he found his recovery far easier this time.
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So, 2006 I think it was, I got a piece of paper that really meant it said, ‘discharged’ on it, so I had to continue to take the tamoxifen for a little longer, and that, as far as I was concerned, was it, until 2008. I was… I discovered a lump in my other breast actually. This time I was… I found it, I have to admit, I was not good about checking my breast regularly, and I’d actually been doing the decking with paint, and I thought, my arm feels tired. And I felt… and I thought, ‘oh bother, there’s a lump there’. So again, I went to the doctor. He said, “Yes, you’ve got a lump”. Went through a similar procedure but I’d noticed that in the eight years that things advanced. There was… all the paperwork was a lot less gender-specific and some of that was due to my comments, and this time they had developed a new way of checking the lymph nodes which… well they do, they look at the sentinel lymph node and they put a wire… they put some dye into your breast. It goes to the first lymph node and they check it on the ultrasound and they put a wire in there to mark it, and this is the day before you have the operation. You go in and they removed, this time, just a lump from my breast and the first two lymph nodes, which was comparatively minor to having sort of most of them removed. And I recovered even… by then I had retired, so it was a lot easier, and because it seemed like this, well… a piece of cake, really.
There are many different chemotherapy drugs or combinations of drugs that doctors can use to treat cancer, and new drugs are being tested all the time in clinical trials. Several people we spoke to had chemotherapy for a recurrence as part of a clinical trial. Some had several courses of different chemotherapies one after the other because their cancer didn’t respond at first. A woman with recurrent ovarian cancer agreed to chemotherapy although it was risky because she had kidney failure; the treatment made her critically ill but she is recovering and now only using complementary therapies. A man whose lymphoma recurred after 11 months chose chemotherapy over treatment to alleviate symptoms because of promises he had made to his family. David (Interview 78) had radiotherapy as well as chemotherapy for his recurrent pancreatic cancer, and another man had a stem cell transplant.
Her 1st ovarian cancer recurrence was successfully treated with chemotherapy. The first drug she was given for her 2nd recurrence didn't work but the next one did, producing another remission.
Her 1st ovarian cancer recurrence was successfully treated with chemotherapy. The first drug she was given for her 2nd recurrence didn't work but the next one did, producing another remission.
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The CA125 test that they do regularly, because you’re checked after each two months, showed that my count was beginning to go up, and I was offered another course of the carboplatin again. This was another session or six sessions, which lasted this time for six months.
I was in remission for a year with this one.
During the early months of 2001 I began to get some of my symptoms back and I was offered a new drug, another trial drug which would be very easy to cope with because I could inject myself three times a week at home and only return to the hospital once a month to collect more of the medication. I had this drug for three months and genuinely thought I was getting better, because I think it was psychologically because I was actually taking part in the treatment, and I was very disappointed of course when the scan showed that it wasn’t actually helping me at all, and it was suggested that I start some more treatment that would, hopefully, knock this other tumour on the head.
Now this time, Taxol, which was a drug my sister had had years before, was being offered, and it was explained to me that this time I would have fewer symptoms but that I would lose my hair. I was meeting up with quite a number of ladies in the Department that were losing their hair and at the time didn’t seem to bother them much. I was allowed to go and choose a wig, which I’ve never worn because it was rather uncomfortable.
I was due to have six cycles of Taxol but the drug seemed to be affecting my toes, sometimes they felt very cold and sometimes they felt numb, and it was decided that I could be let off my very last cycle, and the CT scan after that showed a very good result indeed, and for the last eighteen months now I have been in remission.
After an operation on his neck he had chemotherapy and a stem cell transplant using his own stem cells, which put his lymphoma back into remission.
After an operation on his neck he had chemotherapy and a stem cell transplant using his own stem cells, which put his lymphoma back into remission.
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But the point of discussion of course is lymphoma, and I went through a form of chemotherapy during the mid part of 2000 and then they took me in for higher dose treatment. Having harvested the stem cells from my body they took me into hospital once again and I spent some four and a half weeks in a special designed room where they could use filtration equipment, and a room with my own facilities and so on, so that I could be protected from infection, as the white blood cell count was taken down to zero before the stem cells are put back into the human body. And certainly because the white blood count being so low, then I did get one or two infections along the way, which did stall my exit from hospital. Having said that, it was successful, and for the next four and a half years I was free of the disease.
Some people who had experienced one or more recurrences had achieved remission again, one man was waiting for test results to find out whether his treatment had worked, and others were still in treatment. A few had been told that the level of a tumour marker (a substance that may be produced in the body in response to the presence of a tumour) was rising in their blood or that they had a currently inactive tumour, but that no treatment was needed yet. Others were resting between treatments.
Cancer treatment isn’t always successful and some people had to reconcile themselves to knowing that their cancer would not be cured and they may not live much longer. Sometimes the cancer had been advanced at diagnosis and treatment had never resulted in remission. Some people were considering whether it was worth having further treatment that was aimed at cure. Once this so-called ‘active’ or ‘curative’ treatment ends, people may receive palliative treatment aimed at relieving symptoms of advanced disease, such as pain, and making them as comfortable as possible as they approach the end of their life.
She has so far survived 7 years with lung cancer and has had regular chemotherapy but never achieved a lasting remission. She tries to make the most of the times when she feels well.
She has so far survived 7 years with lung cancer and has had regular chemotherapy but never achieved a lasting remission. She tries to make the most of the times when she feels well.
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But the treatment I'm having now is very mild, although it's taking a long time because I've been having it since the 5th June when they inserted the Hickman line, I've been having chemo on a three weekly cycle. But it's very mild, I don't lose my hair. And one session I have I have a double dose, I call it my double whammy, I am poorly for two or three days, I just hide under the duvet because I'm no use to man or beast then. And then the second one is mild and is no problem to me, and then the third week I have off. You just have to learn to live with it and make the most of the good times when you're feeling well, and that's always been my philosophy. I'm not going to waste my good days by being miserable and worrying about what could happen, will happen. Just get on and enjoy life when you can.
So this mixture of what was it, carboplatin and…?
Gemcitabine.
…you've been having that since last May?
Yes.
And you think this is the end, or will you have another one next month?
This one is the end of the course. I have, as I say, my double whammy, the gemcitabine and carboplatin tomorrow, and then the following Friday the gemcitabine and that is the end of the course. And I have asked my consultant, “Is that the end for a while?” But he's not committed himself, but I just… Seven years on I think he means that, yes, that is the end and we'll leave it be for a while. Because I do feel well and my tumour has shrunk from the naked eye. If you really prod hard you can find it but it's so small it's not worth worrying about, and as you can tell, I'm very strong of voice and I don't cough.
Last reviewed October 2018.
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