Background
Challenges of medical decision making
Deciding for or against having an oophorectomy can be particularly difficult
Research is needed to help women decide on this surgery
Methods
Aims
Design
Setting and sample
Inclusion criteria
Recruitment
Data collection
Data analysis
Results
Sample
Characteristic | Patients (n = 18) |
---|---|
Age in years, mean (SD, range) | 57 (15, 59) |
18–39 | 17% (3) |
40–59 | 39% (7) |
60 or older | 44% (8) |
Menopausal status at the time of decision making | |
Pre menopause | 33% (6) |
Currently undergoing menopause | 6% (1) |
Post menopause | 61% (11) |
Previous cancer diagnosis | |
Yes | 61% (11) |
No | 39% (7) |
Marital status | |
Married | 44% (8) |
De factoa | 17% (3) |
Divorced or separated | 11% (2) |
Single | 28% (5) |
Highest level of education | |
Secondary school | 50% (9) |
Vocational | 28% (5) |
University | 22% (4) |
Gene mutations | |
BRCA1 | 0 (0) |
BRCA2 | 28% (5) |
Other (e.g. Lynch Syndrome) | 5.6% (1) |
None | 67% (12) |
Oophorectomy | |
Yes | 61% (11) |
No | 39% (7) |
Perceived severity
I don't have a problem with getting cancer, I have a problem with the treatment of cancer. From my own personal experience of seeing other people go through it, the treatment is worse than the disease. […] They're spending their whole life of not living their life, just thinking, oh, I've just to get to the next doctors visit and the next doctors visit. (Participant 7, 34 years, BRCA2 carrier, no oophorectomy)
Well, it's not easy for any woman but I guess maybe when you've been through something you make your decisions and you see people, you're losing people with ovarian and breast cancer, you do everything in your power to help yourself and help your family. (Participant 2, 68 years, BRCA2 carrier, oophorectomy)
Basically if I felt bloated, if I was gaining weight or losing weight, or if I didn't feel right in my abdominal area then I should get professional medical help. I'm thinking, that's every other day I have these symptoms. It [=identifying relevant symptoms and seeking timely medical help based on self-assessment only] is not really realistic. (Participant 7, 34 years, BRCA2 carrier, no oophorectomy)
Perceived susceptibility
Well it all started with my sister. She had cervical cancer. Yeah, so that’s how it all started. She had a gene test. We didn’t have the mutant gene, but I still felt that it would be less risk if I did have the op and to have them taken. I was particularly worried, my sister passed away at the beginning of this year, and to see her go through that wasn’t a good thing. That was certainly something that I never want to put myself through. So that was my main reason, I’d seen her go through it all, and so if I could just reduce that risk, I thought it would be a good start at least. (Participant 3, 68 years, BRCA2 carrier, oophorectomy)
I don't know whether some people would think I was crazy for making the decisions I’ve made, but I just feel – I don't know, my innate feeling – it's just a feeling that it's the right thing to do at the moment. (Participant 1, 60 years, no known gene mutations, no oophorectomy)
Perceived benefits
But if I was living in fear and I was worried every day of my life that I may get cancer again then I probably would have had surgery. (Participant 1, 60 years, no known gene mutations, no oophorectomy)I've had a lot of friends say that to me why would you want to have all that surgery if there's nothing wrong? I'm just like well, it's a ticking time bomb really. (Participant 7, 34 years, BRCA2 carrier, no oophorectomy)
Probably one of my biggest fears, especially having a kid, that I wouldn’t be there for him. (Participant 9, 34 years, BRCA2 carrier, no oophorectomy)
As I said, I live on my own. I look after grandchildren during the school holidays. I’ve got my mum still alive, she’s 92. I’ve got to be fit and healthy. (Participant 4, 70 years, BRCA2 carrier, oophorectomy)
Perceived barriers
I don’t want to be this scarred cranky bitch, dry old woman in the body of a 40-year-old. And not just that, I've then got another 15 years on top of the normal woman who does that [= having menopause]. […] But I just want you to understand that I'm not a 67-year-old woman, I'm a 40-odd-year-old woman, so I've got to think of my long term. I'm fighting this to be here for a longer period of time, but I've got to think about these things so that I can manage in those years ahead. (Participant 14, 47 years, no known gene mutations, oophorectomy)
The risk factors of osteoporosis and that sort of thing that was relevant to me. I thought, oh, well maybe it's better if there's something else that we can do, as opposed to [having surgery and] then needing to take hormone replacement and all that sort of stuff, which puts you at higher risk of breast cancer once again anyway. (Participant 7, 34 years, BRCA2 carrier, oophorectomy)
There’s a difference between doing something for a purpose, but just in case seems to be subjecting your mind. Also when you get older anaesthetics aren't very good for your mental condition. It takes ages for you to get over anaesthetics, you know, as you get older as well. I didn't want my – how would I say? I didn't want my body violated, just in case. (Participant 5, 81 years, no known gene mutations, no oophorectomy)
When I had breast cancer, you just go, well you've just got to get the breast off. There's not a choice. It's got cancer, it's sick. It's an easy decision to make. I think I would be the same if I knew there was something wrong with my uterus or my ovaries or whatever. I'd say, yeah, absolutely take it. But when there's nothing wrong with them, as far as I know, it's harder for me to make that decision to have them out." (Participant 1, 60 years, no known gene mutations, no oopohrectomy)
And what if next year they find a test for it [=ovarian cancer]? Yes, that runs through your head. (Participant 11, 57 years, BRCA2 carrier, oophorectomy)
So for me that was a difficult decision because I was a woman that had gone into my 40s and reached my peak of … our children were now late teens, so my husband and I were getting more time to be intimate and all that sort of stuff. (Participant 14, 47 years, no known gene mutations, oophorectomy)
I mean you can't stand there at the café and say, oh, she's had a hysterectomy. I'd be more conscious if my breasts and things like that had to be removed. I mean, I haven't changed, my hair hasn't changed, my skin hasn’t changed. My husband hasn't said to me I'm getting crankier or not. (Participant 6, 55 years, no known gene mutations, oophorectomy)
I felt quite empowered because it just made me believe that all those things [=femininity and sexuality] are very much an inner thing and more of an emotional thing. (Participant 1, 60 years, no known gene mutations, no oophorectomy)
My next birthday I’ll be 34 and we’ve been trying to have a second child now for maybe seven or eight months and it still hasn’t happened yet. So in the back of my mind I feel like there is a bit of a deadline; I need to hurry up, but yeah. (Participant 9, 34 years, BRCA2 carrier, no oophorectomy)
I really kind of feel that I didn't really get a choice to tell you the truth because basically it was you're too young. (Participant 7, 34 years, BRCA2 carrier, no oophorectomy)
We had a big trip home, but then we stayed up there a couple of extra days so that it wouldn’t be as bad travelling home. You just try and plan. […] It is very, very difficult when you live in the country. (Participant 2, 68 years, BRCA2 carrier, oophorectomy)
Well, I'm on the pension, so I couldn't afford to pay for it. Yeah, because like I've been on the pension for a while and I just don't have that money to go ahead with it if it's going to cost me anything. (Participant 18, 74 years, no known gene mutations, no oophorectomy)
No it was all done free. I think the clinic covered the bills. I don't think money would have made a difference either. It was a long-term decision. (Participant 6, 55 years, no known gene mutations, oophorectomy)
Perceived self-efficacy
So I had to have checks all the time to see whether anything was going on. They’re really invasive tests, and they don’t guarantee, they’re not 100 per cent clear. So there was always that doubt. So in the end I was just sick of going through the tests that couldn’t really tell me conclusively anyway, so I decided to have everything removed. (Participant 11, 57 years, BRCA2 carrier, oophorectomy)
I thought, okay, well I'm feeling really good. I'm not seeing any history of ovarian cancer. I'll be keeping an eye on it. (Participant 1, 60 years, no known gene mutations, no oophorectomy)
Modifying factors and cues for action
I've have my breasts taken […] but it has damaged my femininity, you know in my head space in what I see in the mirror it still affects me emotionally, and now you want to take away sort of my last part of my femininity. (Participant 14, 47 years, no known gene mutations, oophorectomy)
I mean it sort of put a bit more pressure on me, in that to finish having a family. It sort of put a bit of a timeline on it all. (Participant 9, 34 years, BRCA2 carrier, no oophorectomy)
The decision-making process
I think my husband and I more or less made it [=the decision] together. We’ve been together that long that we think the same anyway. (Participant 8, 62 years, no known gene mutations, oophorectomy)
It was just always in the back of my mind that that’s probably the better option to go. But I just needed to find more information about it before I actually made that decision because, yeah, it just affects, it does affect you, because all your hormones change and everything. So yeah, it’s a big change to get used to. (Participant 11, 57 years, BRCA2 carrier, oophorectomy)
We did have the general worry that we could get it [=ovarian cancer] because of so much cancer in the family. The doctor did give me some percentages, but I could not remember them now, on our chances of getting it. (Participant 8, 62 years, no known gene mutations, oophorectomy)
There’s a few Facebook groups […] you sort of see more, you can read people’s circumstances or how their surgeries went. Because I don’t have family to talk really candidly about it. A lot of the stories on there are pretty open and honest and I find that helpful to read through them. […] You can post any questions you have on there and actually people that have gone through it or are thinking about going through it [answer], so that’s quite useful. (Participant 9, 34 years, BRCA2 carrier, no oophorectomy)
I wanted to be able to talk about it when I wanted to talk about it, when I could talk about it, and I didn't want to talk about it when I didn't want to talk about it. So I really think that that social component is really important. […] Rather than saying here's the medical reason why you need to do this, you know what I mean. (Participant 14, 47 years, no known gene mutations, oophorectomy)
Everything seems to be the breast cancer. There’s not near as much with the other cancers and they really do need it. (Participant 15, 22 years, no known gene mutations, no oophorectomy)
Yeah, it was very difficult to find anything that really was representative of me. Like I could pull things out of different articles but there wasn't anything for the full-time student, single parent who didn't have a private health insurance. (Participant 7, 34 years, BRCA2 carrier, no oophorectomy)
If you can read the information and take it in yourself, then if you've got queries, ring back. Because sometimes you go to ring up and ask questions and they'll say something and it throws you and you forget the next question. So, I think if you can get your information and then ring them back, it's helpful. (Participant 2, 68 years, BRCA2 carrier, oophorectomy)
Maybe a blurb or a CV on the doctor might, just a paragraph or two, might be handy. It might make people feel better if they know, I've done X amount of surgeries, I operate this often on blah, blah, blah, might put nervous people at rest. (Participant 6, 55 years, no known gene mutations, oophorectomy)
I have spoken about it with my own GP who is very, very thorough and she's supportive of everything I do. She researches it and she explained why it was that he had said that basically it wasn't an option for me at this point in time and I'm grateful. I know, a lot of people don't have access to a really good GP, and if I had any advice for anybody who was going through what I've essentially been through, it would be get yourself a good GP who knows what they're talking about or who is willing to investigate genetic issues. (Participant 7, 34 years, BRCA2 carrier, no oophorectomy)