I was diagnosed with grade 3c Ovarian cancer after debulking surgery in November 2017. I had no symptoms until ascites blew me up in October and I had to stop running. As a fit, healthy and active 53 year old with no family history of cancer I am still trying to come to terms with my diagnosis and poor prognosis. I had never heard of OC before this.
I am fortunate to have wonderful friends and my partner, Jane, offering me all the support and love I could need. I am incredibly grateful for the (mostly) excellent care from the NHS. I am troubled as to why we have one of the worst survival rates in Europe for OC...
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Lou53
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I'm a similar age, and though not ultra fit by any means, very healthy til last Feb. My first symptom of granulosa cell tumour, a rare form of OC (I thought there was just one kind til last year, so had little exposure/understanding of it, too) was the ascites. I just thought an antacid I was taking was making me feel fatter and my waistband was expanding, til my partner told me I looked pregnant!
I think it starts with the doctors, and a time and education issue for everyone, as I knew a bloating feeling was a sign of OC, but didn't really connect how I felt with that symptom. When I presented myself at the GP surgery, saying I felt uncomfortable, she agreed it was probably that. Four days later I was at A&E in terrible pain and throwing up, which thankfully got me drained and then to surgery a week later, as the cyst they'd found then ruptured before planned surgery. I then read a report that despite having online training pointing out the symptoms of OC, only 14% of GPS had taken it. I'm afraid I wrote to my surgery and strongly suggested they all try to make the time to watch it!
Good luck and strength to you in coming to terms with it, we are all still trying here. I was told my version is slow growing and rarely recurs, but my body doesn't seem to have got the memo yet, as it isn't, and it has, but I am deciding to stick my fingers in my ears and do my best to pretend it isn't happening when I can! Like you, I have an amazing (but devastated) partner, who has had to deal with surgery waits twice, catheters, and various appointments for the past year with roller coaster results.
The great thing about it is you surely get to know who your friends are, and it sounds as though we are both really lucky there too! Hang on in there, and let's hope that the Tessa Jowells, George Alaghiahs and Bill Turnbulls out there help to raise the profile of cancer in the UK and our poor performance. OC seems to be a particularly tricky and unpredictable customer, so we need more research into why. I also believe we need to share info across the globe and stop researching in silos.
Hugs to you and your partner, and keep up the questions, it's the only way we might get some answers!
Thanks for your reply and your support. Good luck with your ongoing treatment. It must be hard being told that something is slow growing and then for it not to be. The impact on our partners is also hard to deal with sometimes.
Yes I think we need to keep asking awkward questions too. One question I have is why the 'evidence base' doesn't support CA125 and scans as routine in the UK. Other countries clearly seem to have better outcomes for women with OC, do these countries offer screening? Either the screening or the treatment is better and this is in countries that don't have the wealth of the UK or the amazing asset that is our NHS?! Does anyone know anything about screening in other countries?
Its great that charities campaign for greater awareness of the symptoms of OC but I think we/they also need to do more to challenge the poor outcomes for women in the UK. I'd like to see some of the cancer charities taking more of a lead here in campaigning for better outcomes in the UK for women affected by OC alongside greater awareness.
Well done with challenging your GP practice - it's a hard thing to do but hopefully it will make a difference for the next woman they see. Fortunately for me my GP practice was aware of OC so although it was difficult to get an appointment they did recognise and act on what they saw. I feel grateful for this as it seems that a significant number of women have been delayed in diagnosis and treatment.
Hi Lou, yes it’s such a shock isn’t it? Welcome to this very supportive forum. When the ascites is there (mostly our only sign), it’s so advanced. I agree screening & treatment need to be stepped up in theUK. We are so good at so many aspects of health care, why not this? OC has a low profile & it definitely needs to be higher. ATB for your ongoing treatment. Linda 🌺
Thanks Linda, I don't know if you can see my reply to Madmarilyn (not sure what replies go to all and what are individual) but yes I ageee screening and treatment need to be stepped up. How can one of the wealthiest countries in the world with a universal health care system have such relatively poor outcomes for women with OC? Good luck with your ongoing treatment too.
Thanks Louise. Yes we can all see each other’s replies 🙂 If you want to send a private message you can by clicking on ‘Message’. I’m still amazed/surprised that GPS don’t seem ‘tuned in’ to our (vague) symptoms around menopausal age. I was under a Gynaecologist before I saw my GP with period problems. He never mentioned OC (I wish he had, as I think it’d started then). In the US, menstrual irregularities are considered a red flag for OC. My friend in Germany sees a Gynae Cons annually & has a transvaginal ultrasound. There are some up & coming new blood tests for OC, more specific than the CA125, but how long they’ll take to be developed or available, I don’t know. ATB, Linda 🌷
Hi Marilyn. No, I should’ve explained.....you go to the specific person’s profile and on the right hand side you can click either on follow or message (or read their profile). Lx
Hi, I am very similar to you in terms of stage and grade, pre-diagnosis symptoms (lack of symptoms) and fitness, with just a couple of years more on the clock than you. I was diagnosed in January 2017.
I'm not sure to be honest whether screening is the best way forward as you can get so many negative results unless CT scanning is used. My OC would not have shown up on ultrasound as my ovaries were barely enlarged. My CA125 was raised but I believe this is not the case for many.
What I would like to see is a more positive outlook in treatment. The prognosis is not great but there is a percentage who do well and there's no reason why you shouldn't be amongst those. I feel I have been told all along how hopeless things are for me. After surgery the the surgeon came to tell me that all my disease had been removed, he was beaming and happy, then said, "Well hopefully we have slowed things down a bit" - so I was left deflated again.
At my most recent review my CA125 was just 12 and I was ecstatic. I told the oncology registrar that I feel so well I would have been surprised to hear differently, and was then told, "Well you do know it WILL come back". (My consultant oncologist is fantastic, and uses the word 'if' not 'when' when talking about recurrence.)
It seems such a poor and defeatist attitude. I wonder whether we are really considered worth treating sometimes, and whether this affects the quality of our treatment.
Spot on, Bluepeterella! You do wonder if they think we women are worth it - maybe we should force-feed them L'Oreal adverts til they do!
I think they need to be retrained to be honest but compassionate, give us the reality but with positivity, and to reiterate every time that each individual's response to cancer is unique and cannot be predicted, as well as point out the statistics as being outdated. (I work in recruitment, and have to give negative news on a regular basis, and it's always possible to offer hope. It just takes a it more effort.)
I am a pretty positive person, but being continually hit with more depressing news at every stage is denting it somewhat! I could do with some of that hope from the experts, rather than having to find it all myself.
I was told initially last year it would be 80% unlikely to come back. It transpired it had come back after less than a year in various places, so I had more surgery this year. My consultant seemed frustrated that his early optimism was illfounded and therefore became defeated. He admitted at the beginning that he had to look up my kind of OC, and after I'd googled a bit and asked if I could try hormone blockers last autumn, suggested at my next appointment that I'd put him on the spot by asking 'searching questions' - wouldn't anyone do some basic research if it was their life?!
He also started using words like 'aggressive' when I had been told it was an 'indolent' cancer..... Now he is saying the genie's out of the bottle, and when I pressed for clarity as I wasn't sure exactly what prognosis he was giving me, I was told I have more than 2 years but less than 20.....yet he's no expert in this disease and has been wrong many times already. How dare he! At my last surgery in Feb, he said he'd take photos for me so that I 'can come to terms with it' ! He has told my GP it's incurable, (I didn't get a copy but saw it on her screen in highlights!) and just kept saying he was sorry it wasn't better news just before my surgery, and appeared to have given up on me. I told him I didn't need kind words, but for him to be good with the scapel!
After my recurrence surgery earlier this year, where he found more than the scan showed, he went on holiday then study leave, and my follow up appointment was cancelled due to snow, though he did diagnose a post op infection over the phone at least! He finally got me an appointment with a London specialist he had already taken advice from, but in his referral letter suggested that 'the patient is doing her own research' as well as saying he knew even after surgery it wasn't 100% cleared. It made it sound like a warning that I was trouble!
A couple of months further on, the signs are it's back again already, though I am now on the hormone blockers I suggested over six months ago, prescribed by the London guy. (I can't help but wonder what would have happened had I been put on them ages ago, but I'm now hoping they do their stuff to lower my raised Inhibin levels, keep the b#stard at bay and shrink anything that might have come back.)
My 2nd visit to London last week was rather disconcerting, as the specialist seemed distracted, tense and not au fait with my history: he was unaware the lab results outstanding from last time still weren't back, and had to be prompted to get them by both me and the cancer nurse. They somehow omitted to ask me to have bloods done their last time, so had no benchmark, which annoyed him further, He took a call about another patient in the middle of my consultation, talked in medical jargon even when I asked for an explanation, and about other cancers not relevant to me, and seemed irritated by any further questions. He told me it was good that I felt well, as many with GCT do not, and I felt as though he was telling me to be grateful for small mercies. The whole appointment was incredibly disappointing and confusing, and I am kicking myself for not holding him more to account at the time, as I didn't want to upset the 'expert' who holds my life in his hands.
My biggest concern is for those women who aren't as articulate or confident as I am, for if I struggle to be heard and to understand, what hope do they have? So I guess we need to make certain we question everything, that we understand our own condition as fully as possible, have things explained to us properly and keep asking until it is, and report back for the next generation to be better informed for the future. And teach the b#stards that we damn well ARE worth it, and that they give us a measure of hope at every visit as past of the prescription!
I was a couple of years on from you but also considered myself fit and healthy when diagnosed. No family history of cancer and was in fact caring for my 97 year old mum, who was still living alone and coping well. It never entered my head I wouldn't make old age. I found my diagnosis and prognosis devastating and even one year on still have a few tears most days. I am making the most of my life and enjoying life but I have to say the first thought in my head every morning when I wake up is 'I've got cancer'. I think what is so difficult is that we go through very tough treatment only to be told for most of us that it will come back. I have hopes that one day soon they will find a treatment that will help us all. In the meantime 'onwards and upwards' x x x
Unfortunately, screening for ovarian cancers is next to impossible currently, and I certainly didn't have any symptoms of illness beforehand other than a very swollen inguinal lymph node. The CA125 is not always a useful guide, and certainly isn't definitive, but there is news of a possible new blood test to detect it earlier.
However, awareness on the part of general gynaecology consultants needs to be raised - I had a hysteroscopy almost 3 years ago because of 'strange' cells from the womb - nothing to be seen in there, so I was told to 'wait for a bleed' at which point they would do a hysterectomy. I have since found out that, just because you don't get a bleed, doesn't mean there isn't something going on - its likely the ovaries were doing something funny at that time, but it was never mentioned at all by the Consultant, though he did say if they performed a hysterectomy later, they would take the ovaries 'just in case'. I wonder now, if I had elected for a hysterectomy at that time, whether I would not now be in the situation I'm in (Stage 4b OC with differentiation) - but I would just have been on a waiting list to get it done, as it was elective surgery. I also wonder, had I had the hysterectomy, whether anyone would even have noticed the ovaries were a bit dodgy if they removed them at that early stage; I did not know at the time that a Gynaecologist is not the same thing as a Gynaecological Oncologist.
When I returned last year to the same Consultant with my swollen lymph node, he said he wasn't in the least concerned because the womb was clear and a physical examination revealed nothing of import - it seems incredible that he did not consider the possibility of OC, and in fact, I had to wait 5 weeks for the US scan. What that revealed meant a biopsy of the lymph node within 5 days - but I had to wait another 6 weeks for a diagnosis. It seems to me that OC was not on that particular gynae consultant's radar at all... and we all know that catching it early gives the best chance, whatever form of cancer it is. In fact, I'd say there was a marginally greater awareness on the part of my GP surgery than with the Gynaecological team at the local hospital I originally attended.
The profile of breast cancer has been raised significantly in the last 20 years - I think the same needs to happen for OC, and amongst medical professionals more than anywhere. This lack of awareness is likely what contributes to our poor outcomes, along with the lack of any reliable screening, together with the need for new, more effective treatments for later stage OC rather than what's currently available.
Hi jwilliams, I totally agree. Why wasn’t it on your Gynaecologist’s radar?? I get really angry on other people’s behalf when a diagnosis is delayed! Gynaecologists are in a prime position to test/screen/advise! Also biopsy results shouldn’t take longer than 3 weeks! My Gynaecologist was shocked when I saw him just after my CA125 (704) had been done by my GP!! He had been seeing me for a uterine polyp & heavy (late/irregular) periods. The first book I read after diagnosis was an American one, where the author said menstrual irregularities are a red flag for OC in the USA. Perhaps we can as patients play our part in raising awareness &, politely of course 🙂, asking awkward questions!
Hi Lou, sorry you've had to join us in a not wanted situation but you'll get lots of advice and support on this site.
I think there are many more survivors than we realise. Figures are out of date and once it gets beyond a certain time of survival ladies don't find the need for the web sites.
I like to think I'm a survivor. Like you I'm grade 3C diagnosed aged 61. I'm now 66 and doing well even though I've got the BRCA2 gene. There are lots of us that do get through this. We have a few ups and downs along the way but we can get there.
My GP was as good as useless. Every time I mentioned my expanding tummy he didn't say anything at all. We put it down to retirement and gaining weight through less activity. I was lucky to be taken to A&E for something else and an xray showed the growth.
Good luck with your future treatment and I hope you don't suffer too much. Not everyone has some of the side effects that you read about.
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Low grade OC, statistics and info updates
So relieved......
Hello all
Why No National Screening Programme?
