Cervical abnormalities: CIN3 and CGIN
Telling other people
Many of the women we spoke with talked about telling other people that they had CIN3 or CGIN. Some told their partner and close family when they were referred for colposcopy. Others, who knew only that they needed further investigations at this point, told their family once they had the diagnosis. Some said they told very few people at first, often only their mum and sisters. Later they told more people, including friends.
Doctors didnt know whether Rachel had cancer as well as CIN3. She told her partner just before...
I remember being at my mother-in-laws and them giving a toast to kind of 2008 because they’d had quite a rough 2007, saying, “Well things can’t be worse in 2008.” And the thoughts were going through my mind was, “Oh my gosh, I’ve got cancer. I know I haven’t told them,” you know. “I’ve got, you know, how’s this going to happen.”
And then obviously I went for the colposcopy on 2nd January. And Mr. the consultant who’s name’s [doctor’s name], he was brilliant. He drew me a picture of what was happening. He asked me if I knew why I was there and I said, “Well I’ve got severe pre-cancerous cells.” And he said, “No.” He said, “It’s worse than that.” He said, “We think you have cancer.”
I felt bad that I’d hidden it from them. I felt bad that I’d not told them before Christmas. And I think they were a little kind of angry as well that I hadn’t. But also glad at the same time that I hadn’t as well. It was quite a mixture of feelings I’d say. And then I got a phone call within a fortnight from [hospital name], and they said that, they said, “I can’t believe it, I’m so relieved to tell you that it is pre-cancer, not cancer.” He said, “You,” he just said that he was amazed. He said, “But” he said, “The cells are of the glandular type also. So we would like to see you within the clinic again within six months, where they will take some more biopsies and check everything is okay.”
Some women we talked to said that, at first, they were concerned about how to tell their partner because CIN3 is caused by HPV, which is sexually transmitted (see ‘HPV’). They were wary about how they might react and wary because of their own lack of knowledge on the subject, but partners were supportive (see ‘Relationships and sex’).
Some of the women we interviewed didn’t want to worry their mums so they told a close friend or only their partner at first. Several said they told colleagues, too, because they would be taking a few days off work. One woman, who worked in the police force, found it particularly hard to tell her male colleagues.
Over time, the women we spoke to usually told more people. They were often surprised to learn how many women, including some of their own friends, had had abnormal cervical screening test (smear) results, colposcopies or treatment for CIN. Some found this was very reassuring. Several said telling other people helped them to cope and also raised awareness of the condition.
Telling other people helped Melanie cope. She learned that her sister had had abnormalities too....
So when you got the letter, you told your mum and you told your sister. And that’s when you heard from your sister that actually she had been…?
Yeah, she was like, “Oh nothing to worry about, been for loads of them. What are you moaning about?”
Did that make you feel better?
It did, it did. Like I say, the more I spoke to people, cos I’m very much a very open person anyway. I have to talk to get through things. I’m very, I don’t know, but I also need, but I have to talk to people. That’s the way I cope with stuff, so I spoke to everybody that I met about it really. Everybody I spoke to at some point had been, “Yeah, I’ve been for one of them, I’ve been for a colposcopy.”
I rang my Dad and, at the time when I rang, I rang my boyfriend as soon as I found out, when I came out. And I told him over the phone that I’d been diagnosed with cancer. Because he’s very, very much a strong person, and his dad’s very poorly and his dad’s got cancer himself. So he’s sort of got broad shoulders, bless him.
So I told him and then I can remember ringing my dad and my sister, and I sort of said everything’s fine because obviously I didn’t want to tell them over the phone. So I told them that it was fine. And then I went to see my sister, when she got home from work, and told her. And then I went to tell my dad, which was horrible telling them. But the worst person was telling my mum when she got back off holiday. That was the most difficult thing at the time.
Such a hard thing to have to tell them isn’t it?
Yeah, it was horrid. It was, I think my sister just, oh she just started bawling. And you have to be strong, you have to be strong for them, you know. Its very odd. You try and be strong for them and, like I say, I don’t know whether I was just naive at the time but just, well not naïve, just matter of fact and I’d been diagnosed and I was having treatment and that was that.
Maria said she told her family and a close friend that she had CGIN and CIN3 but didn’t tell anyone else. She didn’t want to be treated differently because she had abnormal cell changes. She felt that people often found the word ‘cancer’ frightening and she didn’t want to be pitied.
Maria had heard of CIN3 before because her sister-in-law had had it. She told her family and a...
You mentioned that when you found out, obviously you told your husband?
Then you told your mum?
And you knew your sister in law had had CIN3 before. So did you tell the whole family? And you mentioned you hadn’t told friends. How did you feel about telling people? And what to tell them?
Yeah. I told all of my family, like only my close family, like my brothers, my mum, my dad and my sister in law. But I didn’t tell – I just told another friend, who actually then, as you said, she told me she also had it. So it helped, you know, to discuss it and she had only CIN, CIN3 she didn’t have both [CIN3 and CGIN]. But she had it ages ago and she’s now fine. So in a way that was good. And also she told me what to do and not to do, because she had, she was much younger but she partied the day after or something and then was really in pain for two weeks. Whereas I rested and so I guess that kind of, that helped, not to go crazy.
But the other friends, I didn’t want to tell because I didn’t want them to look at me like I was ill. And I didn’t because when you say the ‘cancer’ word, everyone kind of assumes you’re going to die within the next six months or something. And I didn’t want people to look at me differently. I didn’t want to feel that people had pity for me sort of. I just said to some of them that I had a little polyp to be removed but that its.
Some women we spoke to said that they told their friends they’d had CIN3 because they hoped it would encourage them to go for cervical screening. If, afterwards, any of them had any questions or concerns, they were able to help or support them.
Friends or colleagues often talk to Colleen if theyve had abnormal results or been diagnosed...
I kind of had become like a mini go-to girl at the minute for all of my friends, and all of their friends at work who are kind of getting it [CIN]. So one of my friends at work who I e-mailed the other day, and she was like, “A girl in my office has just been diagnosed with severe dysplasia. Can you talk to her?” I was like, “Yes, I think so.”
And she was like, she had that same kind of, she’d just found out, that initial panic. And I was like, “I’ve just had my surgery, don’t worry. Honestly, they’ll get you in and out really quickly, and they’ll fix it.” And I was like, “I know it’s really scary and…”
And one of my other friends as well, who lives in Cheltenham, she’s had it as well. She was kind of more my go-to girl. She was like, “You’ll be fine.” Because she didn’t have it with general anaesthetic, she had it under local and so she was kind of telling me about the smoking loins, about how you see all kinds of smoke, which is a bit weird.
And then I did have a friend in Manchester, who got an infection after her treatment, and so she was really quite ill in hospital. So that was quite scary as well. But one of my housemate’s friends at work, she spoke to me as well because she’d just been diagnosed. She’s a bit older, though. She’s about 30.
And so I think as soon as people find out you’ve had it, it turns out that actually, and even just like my housemates going for a smear test because they’re like, well one of my housemates, she’s a year older than me, she’s 26 and she was kind of like, “Oh God, I don’t want to go for my smear test.” And I was kind of like “You have to go for your smear test, okay. It’s the best thing you can do.” And so yeah, it has become a massive topic of conversation recently.
Some of the women we talked to said they didn’t tell many people they had CIN3 because they had young children to care for and wanted to resume normal life as quickly as they could.
Lizzie says she tells more people about her experience of CIN3 now than she did at the time. She...
I don’t really recall telling that many people about it. But obviously I told my mum, who was extremely worried. I probably tell more people now than I did at the time, just because I think if I voiced it too much it would have made it too real. So I just kind of kept it to myself and my immediate family.
And I think by telling people it made it too big, you know. It was one of those things where if I just keep it with us, it’s just small and manageable. So yeah. I just, you know, it was just sort of close family that were really in the know. Had the results come back, you know, that the cells were cancerous, I might then have voiced it. But until that happened I was just like, “Lets just keep it low key.”
Did you come across any other women who’d had it before?
No. Actually, nobody I know. I did sort of, you know, you get the odd, oh the friend of a friend of a friend. But I didn’t actually know anyone directly who’d had it.
Some women we interviewed were wary of telling other people they’d had CIN3 or CGIN because it affected a private part of their body and was caused by HPV (see ‘HPV’). Many felt there was a stigma attached to having HPV and this made it difficult to talk openly about having CIN3. Some said that other people often related it to promiscuity, but stressed that women diagnosed with CIN3 should not feel embarrassed or ashamed because HPV is such a common virus. Several women found it particularly difficult telling their parents and a few found their reaction upsetting. However, some said their mums had been very understanding. One woman said her mum had looked for information on the internet and had found the Jo’s Cervical Cancer Trust website for her.
A couple of women said they didn’t tell many people because they felt embarrassed or that other people would judge them.
Ruth hasn't told anyone she's had CIN3 three times. She feels that it is very personal and, because it's caused by HPV, other people could be judgmental.
It’s something that’s so personal. I haven’t spoken to anyone about it, not even my family, not even close friends. Some people are very judgemental about this type of thing and the more I found out, the more information there has been that it’s related to the HPV virus, so some people are quite judgmental about that. So it really feels like something I can’t talk to anyone about.
Claire found it upsetting when some of her family felt it was her fault shed got CIN3 because...
What was more difficult was to tell my parents because, with all the advertising for the vaccine for the HPV vaccine, which I think is amazing. It’s really good now and I would recommend everyone to take it. There’d been much more awareness about how you can get cervical cancer from a virus, which is caught sexually. And so therefore some members of my family said, well it’s a sexually transmitted disease and you’ve brought it on yourself, sort of attitude, which I found very difficult to… to bear with, because I’m not a promiscuous person. And I found that really upsetting actually. And that was difficult and also then to tell people at work because of course I work in the medical profession and I work just with men because of my job.
And actually you worry that you’ll get the reaction from them that this is a sexually transmitted disease. And it’s almost as bad as telling somebody you’ve got HIV, and it’s not the same. You know, I found that attitude, although the awareness is much better, there’s become this much more of a stigma attached to it. So that was quite, that was the worst experience I think about having this whole thing, was people’s reaction to it.
I actually even told my mother, you can look it up. And advised them to look up Jo’s Cervical Cancer Trust, because the family member that I was telling… I come from, you know, quite a religious family and they have very fixed viewpoints.
I didn’t expect that reaction from them, though. It wasn’t supportive and it was very upsetting. And when you’re telling somebody news like, you need people to be supportive. And you need people to be caring because, at the end of the day, it doesn’t matter how you’ve got it, and it’s very common.
Most people were understanding when women told them that they had CIN3. They’d often never heard of it before but tried to be supportive and reassuring. Some female friends and family went for cervical screening as a result, even though they’d missed appointments in the past. A few women we interviewed, though, said friends or family didn’t really understand, especially if they went on to have ongoing problems such as recurrences. Pam felt that, although reality TV star Jade Goody’s experience of cervical cancer had helped raise awareness of it, most people still had no idea what CIN was.
Pams family tried to reassure her that there was no need to panic or worry because CIN wasnt...
Perhaps I shouldn’t, but I’m going to go to Jade Goody. And it’s like when you tell people, unless you say, I mean if you say to them that you’ve got CIN 1 or CIN 2 or CIN 3, they’re like, “What you talking about?”
If you say to them, “I’ve got cancer,” they’ll know. So all the time I’m telling abnormal smear, CIN 1. Yeah I could talk to them and tell them I was worried. But I’d always get, “Don’t worry, don’t panic.” Because only because of their ignorance as well.
As I say, it was just like, well you haven’t got cancer, you know. It’s only, you know.
They were sympathetic in as far as if I wanted to talk. I was worried they wouldn’t listen. But at the end of it, it was all like, you know, “You’ll be alright, it'll be fine.”
Janet, who had a hysterectomy when she was 37, felt wary of talking to her friends about it because it made them feel uncomfortable.
Janet felt that, because she was still young, friends found it difficult to talk to her about her...
I think a lot of it is my age, you know. Not that I wish it upon anybody at any age. But if you were kind of like in your mid fifties and had a family and everything... I think a lot of people found it very, very difficult that I was relatively young, and they actually found it difficult to deal with themselves. That was the impression I got from people. I was finding it very, very difficult. Not just family, but also like the professionals, they found it quite difficult as well, you know.
A couple of friends like me, they were nurses, one was a doctor, but they found it... they, who were very supportive, found it very, very uncomfortable. And very frightening. I mean one of my friends that did help me said to me, “It’s every woman’s worst nightmare.”