MumsnetGuestPosts (MNHQ) Wed 23-Mar-16 11:59:40

Guest post: "I was told I was too young for ovarian cancer"

Natalie Simms-Gore's symptoms indicated ovarian cancer, but her concerns were brushed aside by doctors

Natalie Simms-Gore

Target Ovarian Cancer ambassador

Posted on: Wed 23-Mar-16 11:59:40


Lead photo

"We were told to hope for the best; the doctors believed the cancer had spread."

As I sat in hospital after yet another round of tests and scans, the nurse told me not to worry. I was far too young to get ovarian cancer, she assured me. By this point I was desperate - my symptoms had been getting worse for months, the pain was terrible and I was exhausted all the time.

The first inkling that something might be wrong came five months before this. In January 2015, my periods became erratic and my stomach swelled. My youngest son was seven months old at the time, and doctors assured me that it was just my body adjusting after pregnancy. As time passed I started getting abdominal pain in my lower right side, but when I visited my GP I was told the same thing again.

The pain got worse. By May it was so severe that I went to my local hospital walk-in centre, where they admitted me to the emergency assessment unit and performed tests and scans. Finally, they told me I had a 6cm cyst next to my right ovary.

This hospital trip was the first of many - I became a regular visitor to the GP, out-of-hours clinic and hospital as the severe pain continued. Coupled with this, I was exhausted all the time - even when I'd just woken up - and my stomach was massive. I was admitted twice to the gynaecology ward, where they tested my CA125 levels. CA125 is a protein found in blood that's associated with ovarian cancer; because my levels were normal each time, I was told not to worry. When my symptoms continued I was referred to a specialist gynaecologist, who discovered a 3cm cyst next to the larger one. Ovarian cancer was at the forefront of my mind.

I was in more pain than ever. I could barely eat, I lost weight and I was going the toilet as often as I did when I was pregnant. During one of my last visits to the out-of-hours clinic I begged them for help as I could barely walk. All I could do was lie on the sofa and watch my baby play. It was heartbreaking.

In June 2015, I saw a consultant who suggested an operation to remove the cysts - and maybe the ovary if needed. I agreed, and the wait for surgery began.

I was in more pain than ever. I could barely eat, I lost weight and I was going the toilet as often as I did when I was pregnant. During one of my last visits to the out-of-hours clinic I begged them for help as I could barely walk. "You're having an operation in October," came the reply. "What more do you want?" At that point, I just screamed. All I could do was lie on the sofa and watch my baby play. It was heartbreaking.

Eventually my operation day arrived. I was petrified. I kissed my babies goodbye and went to hospital; it all felt so surreal. Once I came round after the operation, the surgeon explained that they had removed my ovary and fallopian tube as there had been some complications. I had to stay in overnight, but after that I started to recover. I couldn't believe that I felt like myself again.

Two weeks after my operation, I received a hand-delivered appointment letter for the following Monday. I knew it wasn't good news.

"You have grade 3 ovarian cancer." The day was a blur, but those words - and the pain they caused - will stay with my forever. The same day, I had blood tests and a CT scan. I met my Macmillan nurse, and I said goodbye to the person I used to be.

I went home and started researching what I could do to help myself. I was then dealt another blow - I had clear cell carcinoma, an aggressive rare form of ovarian cancer that doesn't respond well to chemotherapy. We were told to hope for the best; the doctors believed it had spread.

I was due to start chemotherapy, but just before my first round my Macmillan nurse rang to tell me that the doctors wanted to give me a radical hysterectomy and my other ovary and fallopian tube removed. After the operation, the results showed that the cancer had not, in fact, spread.

Three months on, I'm on my third round of chemotherapy, and have three to go. It is precautionary treatment, because there's evidence that the type of tumour I had doesn't respond as well to standard chemotherapy as it gets more advanced - so it's crucial to do everything possible to stop it reaching that stage.

Right now, I'm determined to raise awareness about ovarian cancer in the hope that it might help other women recognise their own symptoms in my story. Beyond that, I'm looking forward to my future with my family.

The symptoms of ovarian cancer are:

- Persistent pelvic or abdominal pain
- Increased abdominal size/persistent bloating – not bloating that comes and goes
- Difficulty eating or feeling full quickly
- Needing to wee more urgently or more often than usual

Occasionally there can be other symptoms such as changes in bowel habits, extreme fatigue, unexplained weight loss or loss of appetite. Any post-menopausal bleeding should always be investigated by a GP. You can find out more information here.

By Natalie Simms-Gore

Twitter: @TargetOvarian

houseHuntinginmanchester Wed 23-Mar-16 13:04:20

I am so sorry thanks

I think you are very brave and wonderful to be raising awareness of this illness.

I will pray that you have a complete recovery thanks

sportinguista Wed 23-Mar-16 13:39:55

As someone who lost her mum to this illness anything which can make women more aware of the symptoms is crucial. My mum didn't realise what it was and even the GP didn't.

All my best wishes for a complete recovery flowers

Footle Wed 23-Mar-16 16:22:28

OC seems to be very hard to diagnose , and hardly even considered in younger women. Even so, it's extraordinary that it took them so long when you were in such extreme pain and distress - I hope the medics who turned you away are aware of the outcome for you.
Thank you for calling attention to the beastly disease. I wish you all the very best.

TheDowagerCuntess Wed 23-Mar-16 19:10:10

I've recently heard of a friend of a friend - a young 30-something who was diagnosed with OC. In fact, I wondered if you might be her, but she doesn't have children yet.

This is so chilling. Thank you for raising awareness - wishing you a full and speedy recovery. xx flowers

Heatherjayne1972 Wed 23-Mar-16 19:24:34

Thing is what do you do if you keep getting fobbed off by people who should know better ?
The whole 'you're too young ' thing is trotted out far to readily - slightly different but I knew someone who died of breast cancer because they would not investigate She was told she was 'too young'. It took her mother to stage a sit in at the GP before she got referred - was too late she died.
She was 17

Ledkr Wed 23-Mar-16 21:06:29

I had breast cancer aged 26 and went cold at the words "I said goodbye to who I used to be"
I fought to be taken seriously even paid to see consultant rather thsn wait 6 weeks. I researched a dr of young women and with him I actively decided on my treatment.
More recently I had my ovaries removed due to having a brca gene, all researched and insisted on by me.
I shall do the same for my daughters.
I believe we should fight for our right to the best possible treatment and earky diagnosis and not just leave it up to Drs and other hcps who forget about us the second we put the phone down or leave the surgery.
I wish you lots if love and strength.


KindDogsTail Wed 23-Mar-16 21:56:26

Thank you so much for writing this to warn people and help raise awareness of ovarian cancer and the potential difficulties in getting a diagnosis. You have been through a terrible experience, in dealing with the doctors as well as the cancer. I am so sorry you have had to go through this. Ledkr and Sportin too.

I hope you will get better and better now and get your life back with your family

TazTheFairy Wed 23-Mar-16 22:17:29

Sending you all my thoughts for a full and speedy recovery. This disease is a complete bastard. My beautiful, wonderful, perfect best friend was diagnosed at 29, after her symptoms were assumed to be post-natal (my gorgeous Godson was 5 months old then). It was 3C at this point. God knows how but she saw him make it to school then became our Guardian Angel (or as my eldest calls her, his Fairy Godmother). Every blog written, every post shared, every conversation had is worth it just to save one person this agony. There are no words really but I sincerely wish that every step you take now are ones towards a life free of treatment, hospitals and bloody shitty cancer.

Littleallovertheshop Wed 23-Mar-16 22:21:05

I was diagnosed at 21 with a similar but different form of OC (germ cell). You've hit the nail on the head, as soon as that Macmillan nurse starts talking, you wave goodbye to that person you were.

It's 7 years ago now, 5 "clear", and when I was in treatment a lady came up to me in hospital and said "you're right in the middle of this now and I was there once. You'll come through it and it will get better". I don't know her name, nothing about her at all, but she gave me hope. So why am I telling you this? You're right in the middle of it just now, and I was there once, but you'll come through it. Have hope, you'll get through it and things will get better.

Thank you for sharing your story - too often ovarian cancer in the young is overlooked. Awareness is the only way we can change that.

I hope treatment goes as smoothly as it can.

Kilmeny Wed 23-Mar-16 22:42:33

Thank you for sharing. I have also had ovarian cancer and I try hard to raise awareness. It knocked me sideways and left me very low. I'm waiting to see if I have the BRCA gene and if I do I will have a mastectomy.

6o6o842 Thu 24-Mar-16 00:16:28

I was diagnosed with ovarian cancer when I was 28. It took me about 6 months of visiting GPs with symptoms that were brushed off as 'insignificant' and 'a bladder infection so minor I can't believe you bothered coming to see me' before I managed to get a referral for an abdominal ultrasound which showed bilateral ovarian cysts. My gynaecologist knew what he was looking at when he went in to remove them. I had classic ovarian cancer symptoms but because I was 'too young' to have it, it took a lot of effort to be taken seriously. You are your own best advocate for your health, if something is not right keep asking questions until you get real answers - as you did.
Hugs to you. No words can make this better for you but I hope the rest of your treatment goes well and that you have a good outcome.

kissmelittleass Thu 24-Mar-16 05:52:50

I just want to say thank you for taking the time to post your story here and trying to help others to be aware of the symptoms. I am so sorry you had to fight so damn hard and for so long to be be heard but you have that fight within you now to go forward and beat this bastard of a disease. You are a brave, strong inspirational lady you will get through this my darling I wish you a speedy recovery and will pray for you. Xx

Halfbaked Thu 24-Mar-16 06:48:16

Thank you for sharing your story. We need to raise awareness of this cancer. The symptoms are so easy to brush aside.

My mum had Ovarian cancer and was stage 3/4 but amazingly recovered and is going strong 5 years later. Due to a history of breast/ovarian but not the BRACA gene I have annual mammograms.

Thankfully the clinic also referred me to a gynaecologist, something my GP didn't. I am also considering having my ovaries removed as a preventative measure, as I am so worried about this type of cancer and its poor diagnosis.

Littleoddfeet Thu 24-Mar-16 12:17:40

I too lost my wonderful mum to OC. She was diagnosed in her 40's and had symptoms for some time before being taken seriously. She was consistently fobbed off with IBS when in fact she had all the signs of OC. She was only taken seriously when rushed to hospital because the tumour had twisted leaving her in enormous pain.
Thank you for sharing your story and raising awareness. Wishing you all the very, very best xxx

GlindatheFairy Thu 24-Mar-16 12:27:00

Well done for raising awareness and I hope everything goes really well for you.

It is also worth saying that those symptoms can also be other things, but is always best to get checked out by a medical professional. I am 40 and went along to the GP with some of the symptoms last year - he took it very seriously - and was found to have endometriosis and a benign ovarian cyst. Had the cyst removed and went back on mini pill and had copper coil removed, the endo symptoms are hardly anything at the moment and I feel much better. Also they are regularly monitoring me with scans and so on.

thisismypassword Thu 24-Mar-16 14:44:01

Brave lady. I wish you well.

naddie79 Thu 24-Mar-16 18:54:18

Thank you all so much for reading and for all your well wishes xx much love ❤ to those of you have lost loved ones to this monster. Ovarian cancer is truly a silent killer and I believe gp's do not have enough knowledge and training to confidently help women. Yes, the symptoms of ovarian can be similar to many other minor illnesses so it does make it so much harder to diagnose. The age issue is also massively misleading, when will they realise cancer is not bias towards age!! I am so lucky I have my babies who are 1 and 8. It took me nearly 7 years to conceive my miracle number 2. I have always suffered with my periods etc and was determined I had endometriosis but nobody ever investigated it, it turns out that clear cell carcinoma is heavily linked to endometriosis. To all you amazing survivors as well, well done ❤ xxx

DrKarenMorton Sat 26-Mar-16 19:32:46

Whilst I am, of course, very sorry that it took a while for this rare tumour to be diagnosed, I would ask you to spare a thought for the doctors who are doing their very best to distinguish between the common causes of tummy pains and the much much rarer serious causes. this is particularly true with ovaries as they are by the way they work, cystic structures. They make a cyst up to 4 cms diameter every month. It really doesn't mean that anyone is not doing their best. It is simply a very difficult job.
I hope the treatment continues to go well.

naddie79 Sat 26-Mar-16 19:52:13

Whilst I understand what you have said, I was very much dismissed a fair bit. I thought a doctor was meant to be be practical yet empathetic? I worked as a hca in the hospital and was witness to a fair few doctor/ nurse conversations, they are just normal human beings who can also make bad judgments. To be honest it is about raising awareness regarding ovarian cancer in young women and to listen to your own body. I'm sorry that this offended you.

DrKarenMorton Sat 26-Mar-16 20:29:33

Not in the least. I completely understand how you feel, and I think you are doing a great thing to raise awareness. I try to do that in my work every day. I think you are doing a really brave thing, but I just needed to say that it can be a really difficult job. Very best wishes to you

Ledkr Sun 27-Mar-16 10:34:19

It's a pity the screening is so innaffective. I ended up having to have bits if my body removed then suffer a premature menopause as there was no other way of early diagnosis, my poor daughters will end up having to do the same if we don't find more reliable ways of screening.

JohnCheese Sun 27-Mar-16 13:58:13

Yes it's such a shame screening is so poor at picking this up. And I don't think there's much on the horizon.

I chose to have my ovaries removed because of strong family history. Not an easy decision. But there really is no screening option if you've a strong family history, screening doesn't work.

Good luck OP. If it gives you comfort/hope/security etc, my DSis had stage 3 ovarian cancer, involving both ovaries. She had a radical hysterectomy and all that goes with it, followed by chemo. And a poor prognosis. We were devastated. And understandably pessimistic. My oldest sister, so young.
That was 1997. She's hale and hearty and as healthy as a healthy thing. Never had any problems! Has never looked back. Amazing. We are so delighted, every day.

I wish you all the very best in your treatment journey. Thanks for raising the issue with your post.

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