Interview OV38

Age at interview: 33

Age at diagnosis: 30

Brief Outline: Ovarian cancer diagnosed in 2000 following abdominal aches and pains. Treated by surgical removal of ovaries and womb followed by chemotherapy.

Background: Podiatrist; married; no children.

Had more regular check-ups because she was taking part in a trial.

I didn't, I felt involved to a degree in treatment plans but because I agreed to go on this trial, and I think I agreed to go on the trial because it's a case of it's good for future, but I also agreed to go on it because I was kind of told that you tend to get good treatments if you go on trials because the drug companies are actually paying for it. I was kind of told that as well. So I just kind of, you know, I wasn't, I was almost prepared I suppose, to put my life in their hands.  

My follow-up appointments are quite specific for five years because I was on a trial, and for the first two years I got follow-ups every two months, the third year every three months, and now into my fourth year so it's every four months, and from about six months time it will then be six monthly. But I have been told that if I hadn't been on a trial it would have been six-monthly now already, so I'm quite pleased I was on the trial because I'm getting regular check-ups.

Her sister was screened and pre-cancerous breast disease was found, prompting other relatives to get screened.

But because I went to a geneticist and because the ovarian cancer cell gene is on the same one as the breast cancer gene, I got a mammogram, and I was also advised that my sister, because I have one sister, should get a mammogram too. So my sister who's thirty-eight had a mammogram a year ago and unfortunately breast cancer was diagnosed and she got an operation, radiotherapy, and she now will get mammograms and ovarian screening too.

So both of us are registered for the mammograms and ovarian screening. The one good thing that you must say about my sister is the fact that it was pre-cancerous cells that were found and the excitement of the breast cancer doctor was basically the fact that screening, breast cancer screening saves lives. And at the end of the day my sister was thirty-eight and might not have developed a lump for another ten years, it might not have been found, it might have spread, so I think you have to look at the fact that, you know, she was actioned very quickly, but it does make us think that perhaps, I mean evidently there's only 10% of ovarian cancer is genetic, but it does make us think that perhaps it's our genes that have given it, you know, both of us, or else we're just very unfortunate. But my sister, my cousin, I have one female cousin on the same side of the family and I have one niece, so they will get ovarian screening and mammograms as well.
 

Was happy that her treatment in a clinical trial was the hospital's standard treatment.

Another thing that you mentioned was that you took part in that trial, so the computer I assume chose which treatment you were going to have.

I would presume, yeah.

How did you feel about that, not being in actual control yourself of which treatment you had?

I was kind of told by the doctors and nurses that both of them were fine. I think at that point when I agreed to go on the trial I didn't perhaps know that Taxol carboplatin at that time was the gold standard, which I would have been offered if I hadn't gone on the trial. I would have been offered it anyway, which I know not every hospital does that. Maybe it does now because there was new Government kind of introductions to treatments of ovarian cancer. But I would have been offered it at my hospital so therefore post, I was delighted at reading 'oh I'm on that one, great'.

I don't know how I would have felt if the other one had been chosen and I found that I wasn't on the gold standard treatment, I don't think I would have been quite as happy, perhaps.

After discussion with her consultant and considerable research, decided to take HRT to protect her bones from osteoporosis.

And actually at, after about a week and before I started with my chemotherapy, the worst thing was actually my menopausal symptoms, having immediately, through surgery, gone straight into menopause, and I really had some terrible symptoms, night sweats, hot flushes, everything. Now very early on the consultant started speaking to me about going on to HRT, and again I did tonnes of reading, did absolutely lots. 

So basically I really did think long and hard about whether I was going to go on HRT but all the medical evidence was pointing towards, because I was thirty years old I needed it for the oestrogen for my bones.

So anyway eight weeks later I did start taking HRT and I have been so lucky because from the day I started taking it I have had no menopausal symptoms whatsoever, absolutely brilliant, and not, I wouldn't go out saying to everyone 'oh you should all take HRT' because for me it was the right thing, and it has been, and it got rid of, that was one thing that I could shift out of the, because that really was the first two months, my worst problem.
 

Was trying to have a family before her diagnosis and has found a surrogate mother for her husband's child.

When it came to the childlessness, that, right from an early stage we, well I decided that, to deal with that at thirty years old I had to say 'Right, my health is the most important thing initially. That is what we have to deal with first but we will not dismiss possibly doing something like fostering, adoption or surrogacy.' These are things that right from the start I thought, you know, 'if we don't want to be childless we won't be', you know. So I dismissed that for a while by doing that.

We've never come to terms with it and we don't have to because we've met a surrogate and we're going to hopefully have a surrogate child. So we're very, very, very lucky, because I, we realise, well I realised very early on I was not the first woman this was going to happen to, I was not the last, and it was how we decided we were going to deal with it that was the issue. And we could have dealt with it by sitting down and deciding right, this has happened to us, we will surround ourselves with our animals and we will not have children, or we could have adopted, or we could foster.

But what we have decided to do is, because my husband really wants children, and probably actually really wanted children more than I did when we were kind of trying even. He was a very paternal type person, and the decision that was left to us, well the decision we've decided to embark on is that cancer has taken away my chance to have his child but it hasn't taken away the chance for us to bring up his child and it will be as much his child whether I've had it or not.
 

Despite initial concerns, had no difficulty resuming a normal sex life after treatment thanks to the support of her husband.

Probably I'm very lucky because I was married for five years before it happened to me, have a very, very loving and supportive husband, so perhaps I'm one of the lucky ones in the respect that he loved me for who I was and didn't mind my scar and everything, and luckily as well, I presume, the actual sex wasn't sore or difficult or anything like that so it made it easier for me and luckily it felt kind of the same. It was just, you know, maybe the first few times was difficult because you had this big scar. But at the end of the day, because I had a loving husband that was prepared to just say 'well, you know, it's only a scar, as long as you're here', whatever.
 

Tried to be as upbeat as possible about her diagnosis to make it easier for other people to deal with.

But I was just me and right really from the beginning it was a case of you can't go backwards, you have to go forwards, there's absolutely nothing you can do about this, and I remember sitting in the, well I was lying in my bed all piped up with all sorts of things, and I remember actually sitting laughing with my husband, my mum and my dad. I don't know, I can't remember what, but it was great because it was almost like, 'well I can still laugh', and it was much easier for friends and family if I was chatty, yappy, myself, much easier for them if I was like that, and it was also much easier for me knowing that I wasn't actually making it difficult for people to approach me, because what I realised very quickly as well was that people were terribly embarrassed. People were, didn't know what to say, people didn't know how to act, and if I was as much myself as I could be I would get more support because people weren't scared to support me. So I learnt that very early on.
 

Said her husband felt bitter because they had not been advised about saving eggs before her hysterectomy.

My husband was very bitter for a long time, very bitter about the fact that we'd had no pre-warning, about the fact we weren't given any counselling pre-hysterectomy, about the fact that there were no eggs kept.  

That was all positive for me and I really didn't see the point in worrying about eggs not being saved, anything like that, because at the end of the day, if I was being given the best chance of survival, then that was going to be the most important thing really, you know, and we had to move on. We couldn't go back, they'd all gone, you couldn't do anything about it.  

But my husband found it really hard to accept that part, that's a whole other thing, it wasn't just ovarian cancer we had to deal with, it was childlessness.
 

She no longer gains from attending her self-help group but continues for the sake of others.

I am getting to a stage where I don't really know if it's actually helping me at all now but I keep going because I think it would be a very big shame if it folded and people couldn't get the benefits that I did get. There's also evidently, my GP told me this, it was my GP that told me about this local support group, and it was my GP that told me that there had been some literature research done in America that said that people who go to cancer support groups are far more likely to survive their cancer because they're kind of, you know, helping each other along the path, road, whatever you want to call it. So, you know, that stuck in my mind and has stuck in my mind and I do think 'right, you know, it must be a good thing if this has been researched'.

Wanted to find out everything possible about ovarian cancer and used many sources.

Going through the kind of cancer journey early on and things, I spoke about the cancer nurses being very very supportive, but I was a fiend for information. I needed to know everything. I was on the Internet, borrowing, buying, whatever, books, reading things that people passed on to me, and I was introduced to a cancer support group in my local town which I started going to, and I still go to.

But what I also started doing was going to this place called CLAN which is Cancer Link Aberdeen North, and basically CLAN had a fantastic library, it had a librarian that would help you with internet sites. It had every kind of bit of information, booklet on cancer of any description. All books about different kinds of complementary therapies, it had all the information about, you know, foods to eat etc.,

She praised the care she had received.

I can’t say anything bad about any doctors or nurses that looked after me, they did the best of their ability within the budgets and times etc., that they have. Because at the end of the day I was not the only patient, I had free treatment on the NHS, I totally respect the job they do, they have a very hard job and at the end of the day, you know, I was very lucky with the ones that I came in contact with.