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MumsnetGuestPosts (MNHQ) Thu 06-Mar-14 14:00:10

Guest post: Ovarian cancer – spotting the signs

March is Ovarian Cancer Awareness month. In this guest post Dr. Sarah Jarvis, writing for Ovarian Cancer Action, explains what symptoms women should be looking out for and why family history is so significant, and urges women not to shy away from cancer 'gene' screening.

Dr. Sarah Jarvis

Ovarian Cancer Action

Posted on: Thu 06-Mar-14 14:00:10


Lead photo

Testing for the BRCA gene can help prevent ovarian cancer as well as breast cancer

Carol Jackson from EastEnders has been diagnosed with breast cancer, and viewers across the country are on tenterhooks to see how she copes with the devastating news that she has inherited a faulty BRCA gene. How will she break the news to her daughters? What will it mean for their future?

Last year, Angelina Jolie bravely spoke out about her own discovery of her faulty BRCA heritage. She made the decision to have a bilateral mastectomy even though she didn't have breast cancer, because the risk of her developing breast cancer later in life was so high. Her decision to tell the world her story has done a huge amount to raise awareness of the risks of this condition – but the stakes are even higher than breast cancer alone.

While in a recent study nearly 9 out of 10 women knew that having ovarian cancer in the family could increase their risk, only 1 in 4 knew there could also be a link with a family history of breast cancer. In fact, having a faulty BRCA1/2 gene can increase your risk of getting ovarian cancer over a lifetime from 1 in 54 to 1 in 2.

Ovarian cancer is the fifth most common cancer in the UK, and one UK woman dies from it every 2 hours. Although it can be hard to diagnose, there are early warning signs and symptoms. Ovarian Cancer Action is working to raise awareness of these. Persistent bloating, feeling full quickly or loss of appetite, persistent stomach or pelvic pain, and needing to urinate more often – all need checking out if they’re persistent, or if you get them frequently over any length of time, especially on more than 12 days a month.

Nearly 9 out of 10 women knew that having ovarian cancer in the family could increase their risk, but only 1 in 4 knew there could also be a link with a family history of breast cancer. In fact, having a faulty BRCA1/2 gene can increase your risk of getting ovarian cancer over a lifetime from 1 in 54 to 1 in 2.

Some women don’t seek help early because they put their symptoms down to other conditions like Irritable Bowel Syndrome (IBS). But IBS rarely develops for the first time in anyone over 50, and it usually starts before you’re 40. New guidance from the National Institute of Health and Clinical Excellence means that if you have these symptoms, your GP should arrange a simple blood test called a Ca125. If this is high, you’ll be sent for a scan of your ovaries. Even if this is normal, you should still return to see your doctor if your symptoms become more severe or frequent.

Most women will get a reassuringly normal result, saving them sleepless nights. And even if the news is bad, an early diagnosis could literally save your life.

Ovarian Cancer Action is also working to raise awareness of the need to know your family history. If 2 or more women in your family have had breast and/or ovarian cancer, ask yourself: are they on the same side of the family, your mother’s or your father’s? Are they blood related? Were they under 50 when they were diagnosed?

If the answer to these 3 questions is ‘yes’, you’re eligible for screening for a faulty BRCA gene. Your GP can refer you, and you should usually get the results within 8 weeks. Of course there are consequences to being tested – a positive result means you will need to consider your options for screening and/or preventative surgery. Having a positive result means the rest of your family could be affected, too. That’s why you’ll be offered full counselling before the test, and lots of guidance if the test turns out to be positive. Scary though the prospect might be, surely the alternative is so much worse?

If you are worried that your family history may put you at risk of ovarian cancer, check out the Ovarian Cancer Action BRCA Risk Tool.

For more information please contact Ovarian Cancer Action on 020 7380 1730, or visit their website

By Dr. Sarah Jarvis

Twitter: @OvarianCancerUK

roselover Mon 10-Mar-14 18:03:52

our mother died of breast cancer aged 50 22 years ago and we were told threw as no screening that could be done for us as no live relatives - who had had the disease were still living - is that right?

TheHoneyBadger Sat 08-Mar-14 12:35:12

yes, i suppose having already gone through a breast reduction the surgery wouldn't daunt me much.

i can understand not wanting to treat existing cancer in some cases but to not find out about the gene and not do things to prevent cancer doesn't make sense to me.

i would be more worried about chemotherapy and the like than surgery personally.

Ledkr Sat 08-Mar-14 12:18:44

I have to admit that having been through chemo I wouldn't do it again unless there was a good chance of a cure or massive remission.
I respect everyone's right to choose though as its terrifying knowing and lots of people simply couldn't face huge surgery.

TheHoneyBadger Sat 08-Mar-14 11:11:40

i cannot understand it at all - i mean i can understand irrational thinking but i can't understand sticking at that point rather than challenging yourself into rational thinking and choices.

why would you not find out? what about your family you would leave behind? if she has daughters what about them? wouldn't you want to lead the way in dealing with it and be the gateway through which they too could protect themselves?

even if you haven't had children yet you still have choices. the lady at work had chosen to have a full mastectomy but to keep her ovaries for a while longer whilst she continued trying to conceive (fertility problems). she was able to weigh it up and decide what was worth risking and for how long etc.

burying ones head in the sand seems crazy for an individual but outright irresponsible if you are a part of family that needs you and in which others too may be effected.

Ledkr Fri 07-Mar-14 19:58:55

lljk see I can't understand it at all. I want to live as long as I can so knowing was so important for me so that I could do something.
I'd only not want to know if I could do nothing.
Obviously everyone is different though.

lljkk Fri 07-Mar-14 19:51:34

I have a friend with lots of ovarian cancer in her family but she has chosen to not get tested. It's kind of ironic because we both work in a medical area. tbh, reading this thread validates her decision in my mind. I can understand more clearly why she doesn't want to know.

Ledkr Fri 07-Mar-14 19:45:09

mulberry I was a snivelling wreck when I got a simple call back and mumsnet helped me, hope you feel better now.

Ledkr Fri 07-Mar-14 19:43:54

Well I was 26 when I had my mastectomy and my breasts are lovely, a bit scarred and uneven but really good and I've been divorced and remarried with no problems.
My mastectomy gave me my life back and my two amazing daughters too I'd never had risked further pregnancies if I'd not had it done.
I agree it's not all doom and gloom, I've had and an having a fantastic life which I appreciate so much more than before.
My daughters will be tested at 16 apparently and I pray everyday they aren't affected but if they are ill be here to guide them through their choices.

mulberrybag Fri 07-Mar-14 19:13:48

Thank you to the lovely ladies who responded to my panicked message. I'm not normally a stesser at all, sorry to have interrupted the thread

TheHoneyBadger Fri 07-Mar-14 17:13:00

the only two women i know who've been through this were both massively grateful and able to see how lucky they were to live in a time where the genetics were understood and they were able to be tested so that they weren't the next generation of women lost to their children too soon.

TheHoneyBadger Fri 07-Mar-14 17:11:50

agree ovaryandout that it's not as dark as cast by some. finding out you have the gene means being in a position to make proactive decisions and reduce your risks massively - that has to be a good thing.

me and this other lady joked about free boob jobs and i said gosh i'll be mighty pissed off if i've just paid 6k for a breast reduction to be done privately and now all the tissue gets removed anyway! grin she was really open and reassuring to talk to about her reconstruction treatment and the tattooing process she was having done to give her 'nipples'.

i think we do need to get rid of or at least counter the tragic, end of the world spin always given to women having a masectomy - i'm tempted to think the plots are usually written by men who think women and their breasts are somehow inseparable.

it's tissue, it can be reconstructed brilliantly nowadays and going from an 80% risk to lower than the general pop is a hell of a lot more important than breast tissue! especially given many of the woman who find themselves making this decision will have seen their mother or aunts or both going through this disease.

LittleMissDisorganized Fri 07-Mar-14 14:53:12

My view is a little different. My mum was diagnosed with ovarian cancer at 55, two weeks before my daughter, her granddaughter was born.

It had been missed by various professionals over the years preceding... and I count myself in that, with hindsight. Her side of the family is not blessed with longevity - I have no idea if further relatives would have gone on to develop it because there is such a strong family history of heart disease. I understand the frustration of those on this thread at diagnoses being missed, and time lost.

But when we fail to reach a state of acceptance, the only people we harm is ourselves. What might it be like if we accepted that ovarian cancer is difficult to diagnose? If we let go of our anger because it can't bring them back? If we accepted that, one day, we will become unwell, and it might be cancer (or in my case heart disease, the two will probably compete to kill me before I'm 60!).

Obviously I don't have the two relatives that would tip me into high risk, and my mum wasn't that young, and those of you that do fit the criteria are well advised to go for genetic testing if you feel you want to. But deciding not to is also an acceptable decision which this post fails to make clear.

Ledkr Fri 07-Mar-14 14:04:38

ovary where have you been all my life?
I've had nobody to "talk to" these last few weeks although the hysterectomy thread has been anazing.
Can I pm you?

ovaryandout Fri 07-Mar-14 12:35:53

Yes to everything in the article above. At the age of 30, 7 years ago i found out I had breast cancer, then found out I had the BRCA2 gene as there is so much breast/ovarian cancer on my mothers side. Having been through the whole set of treatments Carol's story is almost identical to mine. My sister also has the gene but has not had Cancer.

We have both had prophylactic mastectomies, it is the best thing we could do reducing the risks from an 80% chance to lower than that of the general population. Do not worry about finding out you have this gene, finding it means you can take preventative measures. Breast/Ovarian is one of the few cancers that you can do this.

I also had a CA125 blood test and ultrasound every 3 months for 5 years to keep a watch on my ovaries until 18 months ago I had my ovaries removed as a second preventative measure (hence the blog name). I have to admit about being very concerned about this, but its the best thing I have ever done. I haven't gone grey yet and I don't feel 65! Yes I get the hot flushes but a small price to pay for piece of mind.

I'm concerned that Eastenders is adding too much 'end of your world' to the possibility of having a gene. Its not the greatest news in the world of course but action can be taken, so if testing is something you need then do it not knowing is far worse...

KatherinaMinola Fri 07-Mar-14 09:47:54

Great, informative post - thank you thanks

Ledkr Fri 07-Mar-14 09:00:32

Honey I'm estranged from my dad and his family so when I attended a funeral last year I was horrified to learn that I'd lost two aunts to breast cancer and a young cousin to ovarian. Another aunt had had it and was alive and a cousins as being tested.
I couldn't believe nobody had contacted me!
It's a truly awful and terrifying experience.

TheHoneyBadger Fri 07-Mar-14 07:56:27

just a heads up - if anyone is going through a breast cancer scare or a diagnosis or treatment there is a fabulous support thread on mn with lovely ladies full of experience and knowledge. don't suffer alone or get too carried away with the stiff upper lip business.

TheHoneyBadger Fri 07-Mar-14 07:46:59

mulberry - hi i've been round the colposcopy, treatment, all clear, repeat cycle a few times.

they DO send the excised tissue off to the lab to check it and when you go back in 6months time for a follow up colposcopy to check you're then all clear they will tell you it was fine. if it wasn't you'd hear sooner.

i've also got a some anomalous cells in my breast, found by chance when i had a private breast reduction and the removed tissue was sent to the lab as per guildelines. it's LCIS and as with the blumming cervical stuff it's all a bit debated and unclear as to whether this leads to cancer (as in is an early form that will develop further) or whether it is actually ok and if they checked enough women they'd find lots of us had it without it turning to full blown cancer or what. mulberry i asked the consultant at the time whether the cervical and breast could be connected and he said no they're totally separate though he conceded that some people do seem to have more propensity for cancer/cancer like changes albeit a pretty unscientific observation.

i also had a lump so ended up going for a mammogram and ultrasound which looked ok and so all i have to do now is start annual screening ten years early at 40 rather than 50 due to increased risk (definitely/possibly/jury's still arguing).

i confided in my boss when i was having the breast cancer scare and he put me in touch with another lady at work whose mother, aunt and then another aunt all had breast cancer young and finally someone connected the dots and they all got tested. she elected for a full double mastectomy. she was a delight to talk to and it made a huge difference to talk to someone about it whilst i was going through it - it would be so helpful if there was a system whereby women were put in touch with other women who had been through it themselves.

i was totally unaware of the link to ovarian cancer though. i have a teeny bit of paranoia about my ovaries because no one has ever seen them lol. every pregnancy scan i had, every scan around the cervical treatment etc has been unable to see them due to lots of gas apparently and i'm going through a 'oh how strange i haven't had ibs problems for years and it's all kicked off again' phase. it's such a fine line between being vigilant and being a hypochondriac confused

Cat57 Fri 07-Mar-14 07:15:04

Hi. It's really sad to see people suffering with this, especially so young. I'm not a doctor but I know a bit about ca125 tests. Ca125 can be raised for reasons other than cancer, though usually only moderately raised. For example, endometriosis is known to cause slightly elevated ca125 levels. I agree that it's important to be aware of your symptoms and push for further tests if you're worried.

Ledkr Fri 07-Mar-14 07:14:49

mulberry no they are not linked but it's a horrible worrying time.
I've had a couple of call backs and my sister is having a colposcopy on Thursday.
I'd say just make sure you chase up results and attend everything you have to and ask questions.
Take someone with you to appointments if possible.
I hope you are feeling less worried soon.

Ledkr Fri 07-Mar-14 07:10:52

Ladies please look further into the screening if you are high risk. I've been told over and over by experts that the ca125 and scan are NOT reliable.
Which is why I had mine removed and reading these sad stories makes me so glad that I did.
I would imagine the screening is adequate for those at normal risk but for those with a strong family history it may not be enough.

I'm not a doctor though but do urge you not to be fobbed off whiteout research.

I was initially sent away twice with my breast lump as I was too young. It turned out I had a pretty aggressive form of it and ended up having to go privately to get a diagnoses.

I have found time and again that being proactive and pushy is often the only way of getting proper treatment.

muzy40 Thu 06-Mar-14 22:31:05

my mum was told her persistant cough and lower back pain were nothing, she had a hysterectomy where the ovaries were left even though they had cycsts on them, less than 5 years later she went from size8 to size20 in a week, infact she looked more pregnant than me at the time. Upon visiting the docs nothing was done until she went for a routine visit to her private clinic, the doctir was shocked admitted her immediately operated within 24 hours removed a tumor the size if a football which was canerous - ovarian cancer. unfortunately being left meant the tumor had attached itself to liver, kidneys, abdomen, bladder stomach. nothing could be done! now i get checked CA125 every year. it is worth it but not all doctors know which tube to use for collection - its the BROWN One! mum died about 5 years after so do get checked if anything is a miss

ImNotCute Thu 06-Mar-14 21:51:23

Thanks happyhippychick, I'm glad things turned out well for your mum, I'd hate anyone else to through what my mum went through. I know that if my sister or I ever have any symptoms we wouldn't hesitate in having our ovaries removed just to be sure.

YouveCatToBeKittenMe Thu 06-Mar-14 21:29:26

My Mum died of Ovarian Cancer over 20 years ago aged 53. Everytime I feel the slightest twinge down there I panic. I do have symptoms of IBS and am now even more terrified after reading all this here.
I do think I will talk to my GP about a hysterectomy as this is the only thing that would put my mind at rest.

Biscuitsneeded Thu 06-Mar-14 21:05:41

Mulberry, sorry to hear you have been having worrying times. I'm not an expert but I'm pretty sure that cervical cancer is not a result of a faulty gene, but rather the result of exposure to the HPV virus. So you wouldn't need the scan or blood test unless you have family history of breast or ovarian cancer. If a biopsy was taken from your cervix then yes I guess they will test that. Hope you get reassuring news - I think it's quite common to get abnormal smears so you shouldn't conclude that it's likely to mean cancer - just that you have some changes that might in time lead to cancer if not treated. Hope I've got that right.

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