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Ovarian Cancer

Treatment decisions for ovarian cancer

Treatment of ovarian cancer is influenced by many factors - age, general health, type and size of tumour, what it looks like under the microscope and whether it has spread beyond the ovary. Doctors usually recommend whatever treatment they believe would give the patient the best possible result. However, all treatments involve a trade-off between benefits and side effects and very few doctors know much about their patients' priorities. When choices are to be made many doctors now recognise that patients want to be involved.

At the time of diagnosis most women know little about ovarian cancer or the treatment options and tend to rely on their doctors to recommend the treatment that offers the best possible chance of cure. As they learnt more about their disease and the treatment options, some women became fully involved in treatment decisions, or even took control. 

Women who remembered being involved in decisions talked about consent to surgery, whether to take part in a clinical trial (see 'Clinical trials'), choices about the order of the surgery and chemotherapy, whether and which type of chemotherapy to have, whether to use a cold cap to minimise hair loss and, in a few cases, whether to have radiotherapy. 

Some women were asked for written consent before surgery to removal of certain organs if during the operation they were found to be affected by cancer. A woman of child-bearing age was asked to agree to her other ovary being removed if necessary, a move that would make her infertile. Others agreed to a possible hysterectomy in addition to removal of their affected ovaries. One woman doubted that there was no disadvantage to having a hysterectomy and checked what she had been told with a medical friend. A woman who initially had one ovary and her tumour removed was later offered a hysterectomy.

 

Agreed to removal of the second ovary if the first was found to be cancerous.

Agreed to removal of the second ovary if the first was found to be cancerous.

Age at interview: 38
Sex: Female
Age at diagnosis: 32
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Oh and the other thing was that I had to consent to them doing, they were going to do frozen sections during the surgery because if it was cancer they wanted to do the correct operation and I'd agreed that they could take the other ovary, because I'd been advised that if one ovary had become affected by cancer then the other one probably would at some point too, or there was a higher risk, and that it would be safer if I'd decided that I'd had my children to have both done, so then I have to get used to HRT as well.

I felt at the time that I'd finished my family and I certainly felt that if I was at risk of cancer then I wanted to make sure that I was going to be strong and well for the children that I had. I think subsequently I thought maybe that decision might not have been one that I was altogether happy with, but to be honest I probably would have made the same decision again.

I think I didn't really fully explore whether I could save eggs or frozen embryos or anything like that because I did have two little children and I had a very short time to decide. And also I thought, you know, I was married at the time and assumed that was my relationship and, so I think although I have considered the, whether or not that was the right decision since then, at the time it felt like the right decision to make.

 

Her doctors seemed relieved when she chose to have a hysterectomy after having her ovary and...

Her doctors seemed relieved when she chose to have a hysterectomy after having her ovary and...

Age at interview: 41
Sex: Female
Age at diagnosis: 38
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The hysterectomy, I remember we were in this room with the surgeon and the oncology team and, because all this happened at the time when there was a lot of news reports and cases brought against gynaecologists, and he was saying about "well this is the chemotherapy you need and, you know, you might want to look at a hysterectomy," but it was the way it's put "you might want to look at a hysterectomy." And then, you know, you dig a big deeper "Okay well what's the best way of walking way from this? So if it's going to be awful and sheer hell for a year as a family, how are we going to, how am I going to create the best chances of us walking away from it all?" 

And, you know, it's like "Well you don't have to do it but, you know, to have the hysterectomy and to lose the next ovary would probably be the best thing, but the choice is yours." And there was a reluctance to turn round and say it purely because there was all this litigation in the news at the time. And so it's like 'okay well I really think the only way round it is to have the hysterectomy' and as soon as I said "Yes we'll have a hysterectomy," they all went 'phew', you know, because it was just so bizarre, you could see the relief, it's like okay well that is the best decision.  

Others were asked to consent to a colostomy in case part of the bowel had to be removed. One woman decided against this because she would feel she'd had enough if it had spread to her bowel. Sometimes women asked if they could have more than one surgical procedure done at once: a couple of women who were to have surgical biopsies had asked their surgeons to take out anything that they found to be affected at the same time.

 

Refused consent to a colostomy if part of her bowel was affected by the cancer.

Refused consent to a colostomy if part of her bowel was affected by the cancer.

Age at interview: 64
Sex: Female
Age at diagnosis: 59
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Well I think with the surgery there was no choice really. The one treatment decision that I was faced with, with the surgery, was in case it had affected the bowel, and this was another amazing thing about the team I had, that on the morning that I had the operation, I was first on the list, the bowel surgeon was also available, which is phenomenal, isn't it? And I,  when the surgeon told me that, I said I would not give consent to have a colostomy. I didn't want that. 

I thought if it had gone that far, and I had actually talked this through with a colleague who is at the Marsden and in fact I said 'What is, how do people die when they have a bowel cancer which they refuse to have a colostomy for?' And she said, she told me what the implications were and, and I felt very clear in my head that I didn't want, you know, if it had got to that point. So that was one decision that I made, but I didn't, I mean it wasn't necessary in the event.

 

Asked her surgeon to remove any affected organs during her operation rather than just taking a...

Asked her surgeon to remove any affected organs during her operation rather than just taking a...

Age at interview: 41
Sex: Female
Age at diagnosis: 35
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I went back into hospital, they told me they were going to do a biopsy and I said, 'I didn't really want a biopsy, if they were going to go in and they found something I'd rather they did whatever they had to do then, just take anything that I could live without out and just get on with it'. So basically that's what happened. I had a total hysterectomy which removed everything, ovaries, everything.  

One woman was offered chemotherapy followed by surgery but asked to have the surgery first because she believed her post-operative recovery would be slower after chemotherapy had weakened her immune system. Women whose surgery brings on an early menopause are usually offered the choice of hormone replacement therapy (HRT) (see 'Menopause'). 

A few women had to decide whether or not to have chemotherapy as well as surgery. A woman who initially had not wanted it described how her oncologist gently convinced her that it would be a good idea. A woman who didn't want the steroids that are often given with chemotherapy was persuaded to accept a lower dose than usual. One woman had to choose because her surgeon and oncologist disagreed on the need for chemotherapy. Another said she was almost relieved when the decision was taken out of her hands when the laboratory results from her operation showed tumour cells in her abdomen. A woman who was told her cancer was too advanced for any treatment said she could not believe it because she felt so well. She demanded chemotherapy, to which her tumour responded well.

 

Was given the choice of whether or not to have chemotherapy as well as surgery.

Was given the choice of whether or not to have chemotherapy as well as surgery.

Age at interview: 57
Sex: Female
Age at diagnosis: 56
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She [the oncologist] told me that it would be only a few months if I didn't have any chemotherapy, I would only have a few months and, that the chemotherapy that she was offering was a gold, what she said, her words were 'Gold star treatment' and that it was very well worth having. Because I'd explained to others I didn't want to have, just have chemotherapy and not have any quality of life, having just watched my friend die of cancer, so, you know, I was very, that had only happened 6 weeks ago, so 6 weeks before I'd seen the gy, I'd seen the oncologist.  

So I did explain that to her but she said it was, you know, I would only have months if I didn't have it and it was a very very good treatment and it, and there was even at my stage, stage 3, there was a very good chance that it would, you know, it could get rid of the cancer altogether and, you know, there's, there's a very good, you know, there's a very good chance still.  She had, she said she had actually discharged people that at my stage but she said everybody is different and, you know, but it is well worth having, having the chemo. It's also a very kind chemo, the chemo, the carboplatin she said was very kind, you don't lose you hair with it and, it's, you know, it's not one of those that makes you feel dreadfully ill, although it's not pleasant'. So I said, well I'd go away and think about it, and I went away and thought about it for a few days and then I went, I phoned up and said, 'I'll have it', and I started virtually the next Monday.  

 

Was told that her cancer was too advanced for any treatment but demanded chemotherapy, which was...

Was told that her cancer was too advanced for any treatment but demanded chemotherapy, which was...

Age at interview: 61
Sex: Female
Age at diagnosis: 58
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And the Sister and a doctor sat down on my bedside, closed the bedroom door and said 'awfully sorry, it's very bad news, you've got a massive ovarian cancer.' And I was saying 'hang on, I came in with a chest complaint. You know, I've got no symptoms, no bleeding, nothing.' And they said, 'well, I'm sorry, you have.' And I said, 'oh fine, I'll have a hysterectomy, then.' And they said 'no, it's gone way beyond that, surgery will be completely out of the question, it's too far advanced for that.'  

And we asked what happened now and they just said, 'well, it's very far gone.' So I said I wanted to see a gynaecologist immediately. 

And he just said 'there's nothing at all.' I said 'will I see you again?' and he said 'no, I don't think so.' He called my husband outside and said 'you realise she's very, very poorly, she certainly won't see Christmas, or if she did it would be a miracle.' [My husband] said, 'what sort of time do you think?' and he said '2 to 3 weeks.'  

And I asked for chemotherapy and I was told that, really no. I was way beyond help, you know, was too far gone, and chemotherapy was so unpleasant. But I demanded chemotherapy. We even said we'd pay for it if, because I didn't feel as ill as what they were telling me I was. I know I looked it and my weight just dropped off me with these chest drains.  

Anyway, I got chemotherapy. I put a big brave effort on when I went to see the oncologist, I was in a wheelchair but I walked from the ward door to see him and he agreed I could have it.  
 

Some women were invited to choose between carboplatin chemotherapy alone or in combination with paclitaxel (Taxol), which can be harder to tolerate. One woman wanted to minimise the effects of treatment on her life and decided against paclitaxel. 

 

Was offered a choice of carboplatin alone or combined with paclitaxel.

Was offered a choice of carboplatin alone or combined with paclitaxel.

Age at interview: 54
Sex: Female
Age at diagnosis: 53
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We did talk about the different chemotherapies but my husband and I had already come to a decision about that. The present, or at least the gold standard was a combination of Taxol and carboplatin. I'd found out that the Taxol causes the more severe side effects but the research that they had to hand then was that it produced slightly better results if you used the 2 in combination. Although I believe NICE have recently brought out a new report on that. But anyway, the present gold standard then was the combination of the two. 

Now for some women hair loss is not acceptable and they go just for the carboplatin on its own, which is, you know, fair enough. But with Taxol it is almost a certainty that you're going to lose all your hair. I'd read that a cold cap could help prevent the hair loss but I thought if my hair's just going to start thinning and look awful, I'd really rather just lose it all and have the benefit of having the Taxol as well.  

Radiotherapy is rarely used as a first-line treatment for ovarian cancer, but one woman was offered it after her chemotherapy. Another who was receiving radiotherapy for a recurrence of her cancer was offered a 'booster' treatment without explanation of what this meant.

 

Was offered the choice of radiotherapy after her chemotherapy.

Was offered the choice of radiotherapy after her chemotherapy.

Age at interview: 65
Sex: Female
Age at diagnosis: 59
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Well, for the chemo I was told that I should have the chemo because it would help the situation and they were going to book me in for it, but for the radiotherapy I had a choice of having it or not having it. But the way the doctor spoke was it wouldn't do any harm just to finish the treatment off with radiotherapy. Sort of reassurance that the, you know, the cancer had been eradicated.

So you took their advice and you agreed to it?

Yes, I did say to him 'do I really need it?' He says 'well it wouldn't do any harm and we think maybe it would be helpful to finish the treatment off', so I had it.

No-one we talked to had refused conventional medical treatment in favour of alternative therapies or no treatment, although several knew they could. One woman decided to postpone a course of chemotherapy for a recurrence of her cancer because she had a hard time with chemotherapy and was not feeling emotionally strong enough to endure it. Others who had recurrences treated several times had decided against, or become resigned to, having no further treatment.

 

Was resigned to having no more treatment for her cancer recurrences.

Was resigned to having no more treatment for her cancer recurrences.

Age at interview: 63
Sex: Female
Age at diagnosis: 52
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I don't know now whether there is any more treatment I could have. I did ask at the clinic and she said 'there were various things but we'd have to weigh it up against quality of life and what you've been through already', and I strongly believe in quality of life. I've seen people who possibly are terrified of dying, who go to any lengths of treatment to keep themselves going, and I don't feel like that. 

I did feel a sort of responsibility towards my sister, and have had a talk with my local vicar about it, it's sort of the same as trying to stay alive for my son's wedding. But I realise I can't stay alive for everybody and everything, there's got be an end sometime. And so I'm going to be quite happy with what, if anything, they say when I go for another clinic. I think at the moment they are waiting for the CA125 to go rushing up, well I'm not sure from my previous experience that it's going to be like that.

Patients and doctors are often uncertain how best to share in decisions about treatments. Many women said they trusted their doctors' judgment completely and would accept whatever treatment they suggested. Sometimes the doctor made it clear that there was a choice, while also giving a clear steer about what they thought was the best option. Being asked about their preferences can surprise or shock women. Some worried that not accepting the doctor's advice would prejudice their future care. Others stressed the importance of feeling involved and knowing that doctors will both discuss and respect the decision, even if their choice would have differed.

 

She trusted her doctors' judgement in making treatment decisions.

She trusted her doctors' judgement in making treatment decisions.

Age at interview: 59
Sex: Female
Age at diagnosis: 49
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What about treatment decisions, were you involved with your doctors in deciding what the treatments should be or was it just a case of them saying 'This is what you need'?

Entirely up to them. I had no input at all into that. I don't know if I, I wouldn't have had any knowledge to be able to say 'yes' or 'no' to something and I wouldn't have had the courage to say 'no' to anything. Whatever he said to me I went along with, I trusted him implicitly. Still do. If he said to me now 'You need some chemo' I would discuss it with him and find out why, but I'd go with it, I would definitely go with it.

I don't think I personally couldn't have done it any differently, I would have to trust him a hundred percent to know what was best for me. I wouldn't, and if I didn't feel like that with him I wouldn't be able to be a patient of his, I would have found that very difficult, but straight away it was good and it worked - fortunately.

The government recommends that women with ovarian cancer be treated by a specialist gynaecological cancer team. These teams are usually based in larger cancer centres, so you may have to travel for your treatment.

When a diagnosis of ovarian cancer has been made a team of specialists, multidisciplinary team (MDT), will meet to discuss and agree on the plan of treatment that is best for your situation. The team will include: 

1.   A surgeon who specialises in gynaecological cancers called a gynaecological oncologist.

2.   A clinical or medical oncologist (to advise on chemotherapy).

3.   A radiologist (who analyses x-rays).

4.   A pathologist (who advises on the type and grade of the cancer, and how far it has spread).

The team may also include a number of other healthcare professionals such as a'

1.   Gynaecological oncology nurse specialist

2.   Dietitian

3.   Physiotherapist

4.   Occupational therapist

5.  Psychologist or counsellor.
 


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Last reviewed June 2016.
Last updated June 2016.

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