What were your first symptoms?

[Plimsolls_on]

Hello, I'm new here ... and can't get a GP appt (Somerset). I have had symptoms for a while now, but keep only getting through to a practice nurse who diagnosed gastroenteritis over the phone - frustrated. I would like to know what people's first symptoms were.. My aunt passed away (74 yrs) of peritoneal cancer which they found in her ovaries post-mortem (I don't know what this means), and she and I both had breast cancer and we are the only 2 females in our family not to have had children. I am 56 - have left ovary discomfort that escalates into pain regularly; also bowel issues - I had home bowel cancer screening last year - clear. Can't get a GP appt at all..I had to fight my way in last year to get a cervical screen, they wanted to put that off due to Covid. Any advice?

[Lyndy]

Sorry to hear that you are stuck like this. I suggest emailing your GP, state very clearly that you have symptoms and are worried that this might be cancer. Tell them about your family history. Ask them to respond within seven days. You can raise a complaint via your CCG and involve your MP.

Make a fuss! They should at least order a ca125 blood test. Patients with suspected cancer should be put on a two week wait for a specialist. Good luck xx

[Plimsolls_on in reply to Lyndy]

Thanks for the advice..so difficult putting up a fight to get what you think may be bad news.

[Lyndy in reply to Plimsolls_on]

I know but trust me you don’t want to wait and wonder like I did xx

[ZenaJ]

I would ring the surgery again and insist on a CA125 test. If not I'd go to A&E where they are really busy but what else is left for you to do.

I didn't have any symptoms and it was only at A&E where I went after not being able to get a GP appointment for something unrelated to cancer. Luckily, it was discovered there at the same time and as I was already stage 3C, if my other illness hadn't happened, I probably wouldn't be here now. Good luck.

[NYClady]

My first symptom was abnormal bleeding 20 years after my last period.

[Danteswish]

It’s really hard to say without worrying anyone but these are a few of the symptoms my mum had. She was told her pain was a gynaecological problem. Eventually after having a range of scans they realised it wasn’t.This all happened just before 1st lock down.She was then passed over to The Royal Marsden. It may well be nothing but if you are not happy you have the right to another opinion!

[Boot1947]

Hi Plimsolls, am so sorry about your GP situation. My only initial symptom was a period-like pain on my left side that got worse each month. Eventually I was sent for a trans-vaginal ultrasound and only after that did my GP bother to test my CA125 (which was 3,900!).I hesitate to say this as I volunteer in a busy A&E but I think you should go to your nearest one, explain you’re in pain, and ask them to do a CA125 when they do your blood test, which they will most likely do. Take a good book, to take your mind off your pain and the wait! Hope that’s useful.

[Loorunner]

I'm sorry to hear this is so difficult but definitely think you should persist. I had diarrhoea symptoms first, then bloating took me to to the gp who did CA125...but I wish I'd acted on the diarrhoea and not got to that bloating stage...as you have some family history you should definitely be seen/have bloods taken. I'd be writing a more formal complaint if you aren't. It's really good you are on to it and once you get through this barrier theres lots of help out there should you need it. Very best.

[Helvelyn]

It’s unacceptable that they haven’t seen you. I mainly had lower abdominal pain. But had been having back pain before that which they thought was a UTI but probably was O.C.I saw the practice nurse who was excellent. She examined me, did bloods and referred me to an urgent scan.

I would email the practice. They have to see you if you have symptoms of possible cancer.

I hope it isn’t but I could have left my symptoms a lot longer as I just thought they were menopause related. I was 3c when I was diagnosed.

Be assertive and hope they it sorted.

xx

[JustKBO]

That is outrageous on the part of the GP. Is it over zealous receptionists? I would demand an appointment or referral. Do not be fobbed off. My first symptoms were constipation and bladder issues then period type dragging pain. I paid £250 for a same day appointment and instant answer of cancer. I then went back to NHS and was operated on within 2 weeks. Stage 3c. 2017. Since then I’ve had exemplary care but that first hurdle took a bit of getting over. Good luck.

[Guilane]

So sorry to hear about such appalling GP treatment. I had a UTI, then bloating and it hurt on one side of my lower abdomen every time I sat down. My CA125 was 3200, stage 1V. Hopefully, yours is unrelated to cancer but you need at least the blood test and an ultrasound. Please persist so you get past the receptionist. Lay it on thick, say from the outset that you think you have ovarian cancer. Is there another practice? You might get an initial screening if you changed. Try contacting the lovely ladies at Target. Good luck. X

[SUE7777]

You could try going to and A&E with your symptoms I got that information from my GP. All the best Sue xx

[mrstadpole]

Even before covid my GP said I could have a scan but it was going to take about 2 months.I was in pain,went to A&E,had a scan and cancer was diagnosed within two hours.Obviously it will take longer in A&E now but at least they will get to the bottom of it.Good Luck x

[Ruebacelle]

Lyndy is right. You are the client

[RoseMS]

I had night sweats for a couple of months, then diarrhoea, (am way past menopause). GP said food poisoning ?! Went back and another GP sent for blood test: CA125 was at 5000 and was diagnosed 3C. If I was you, I would go to A&E and be prepared to wait it out, at the very least they will do a blood test and likely a scan.

[SopSinger]

Agree with the other responses, call your GP and insist on being seen, but say you are otherwise going to A&E, and go! You are not well, it's completely unacceptable for them to refuse to see you at all. Any half competent GP should be willing to do a phone appointment, and would then call you into the surgery (that's the way my surgery has been working since before the first lockdown!) By the way, primary peritoneal cancer is in fact a form of ovarian cancer - ovarian cancer appears to begin in either the peritoneum or the fallopian tubes before "settling" in the ovary or ovaries. So you definitely have a family history and should emphasise that.

[Plimsolls_on]

Thanks for the advice everyone.. I'm going to walk into the surgery today.

[Plimsolls_on in reply to Plimsolls_on]

Update - receptionist said I could only book a Dr appt between 7-10 am and not in person; so she wrote my online request for me and sent it through to be read by a Doctor..now waiting to hear.. I said did you write the word "ovary" and "family history" on the request, she said yes... however I am getting the clear message that diagnosing early stage OC is vitually impossible.. are there any sure fire ways to tell assuming I have caught it early? Is CT scan the way to go.

[candyapplegrey in reply to Plimsolls_on]

hi there, also very difficult here to get a GP appointment. i suggest asking for a phone appt & then on phone ask to be sent for an ultrasound. new GP at my surgery said i needed face to face w. female doc but latter called me back to say she'd book me for ultrasound. symptoms were post-meno bleeding - are you pre or post-menopause? i had plenty more symptoms going back 3 years though. do you have brca gene? hope by now you at least have an appt. i don't think early diagnosis is hard. we say that because it's better than the truth, which is, like your GP (and mine), the symptoms we do have are not investigated and women typically tend to carry on without complaining. xx

[MarleyZ]

Sorry that your GP is not acting swiftly, ring them up tell them if your not seen then when you go to A&E you will let them know how your symptoms were being diagnosed over the phone.

The symptoms I had was a really bad stomach ache like I had never experienced before, had within 5 mins of showeringa feeling of almost feeling sweaty, almost blacking out and feeling a bit nauseous, still didn't go to GP, it was the spotting of blood after almost 15 years of menstruating that made me book an appt alongside the feeling of exhaustion no sleep was enough, lucky for me GP did a quick referral under cancer which she suspected, was called before the week was out by the Onocology team. Think your GP is just being incredibly lazy, if you don't get satisfactory answer, go to A &E please. Wish you all the best.

[organicinna]

Hello dear. No GP appointments in Somerset? That's bad (( Can you argue? I would. In Surrey GP is not bad regarding appointments and specialist booking. But they still missed my cancer during the last 5-6 years before I was diagnosed. I had slight period aches and ovary's aches, despite that I was already long term menopausal. It wasn't bothering me much and I though myself " Oh its my body changes and ovary's shrinking " But I still ask GP to check it saying I had 2 aunts died of cancer age 60ish. 2 ultrasounds, smear tests and bloods didn't show anything at that time . But when last year I complained again on slight period aches in my ovary's area , I called GP only because I had a weird dream seeing myself in the mirror as skinny naked and bold !) I didt tell GP about my dream but she reacted immediately and invited me on face to face app,ordered bloods CT scans, then operation in 4 weeks Then soon enough they discovered stage 4 ovarian...

[OvacomeSupport Partner My Ovacome Team]

Hello Plimsolls_on,

I am sorry to read that you have been experiencing symptoms that you are worried about and have been having difficulty getting a GP appointment. The signs and symptoms of ovarian cancer are also the signs of symptoms of other much more common conditions, but it is important to have them investigated so that the cause can be identified. I’m pleased to hear that an online request was submitted for an appointment and I hope that you hear from your GP soon.

Please don’t hesitate to contact our support services team if you would like to talk anything through or if we can help with any questions. You can contact us by calling 0800 008 7054, by emailing us at [e-mail] or by sending us an instant message through our website. We would also be very happy to arrange a video call.

I will share a link here to our information about the symptoms of ovarian cancer which includes information about some initial investigations that a GP may request: ovacome.org.uk/symptoms-of-...

I do hope that information is helpful. Please do get in touch if we can help with any further information.

Best wishes,

Cathryn

Ovacome Support

[Bray]

My symptoms were indigestion lack of appetite and bloating . I had to wait ages to get a blood test they kept fobbing me off with tablets and other diagnoses. Keep on to them . You can insist on an appointment. Good luck xx

[Iside]

I waited 3 years for correct diagnosis, I was swimming daily & spotting was thought to be from chlorine in the water. My lady GP pushed me through in 2 weeks & then within 2 months I was told it was OC stage 3 , I am still under treatment which is exceptional. Iside X

[Flute_7]

Hello, so sorry to hear of your concerns, really worrying time for you especially with prior history. Glad you went back to your GP. As tomorrow is Friday I would contact them again with a comment that you have been left with no alternative other than to go to A&E. (this might be the quickest way to get some answers).I think someone else suggested asking for a CA125 which I would also recommend, a higher than normal reading doesn’t always mean cancer but could be an indicator that something is not right.

Just for info, I’m long past menopause, I didn’t have any symptoms. Went out for a run and had a small bleed. Made an appointment at my surgery, was seen next day, fast tracked to oncology and diagnosed with OC stage 3/4. With hindsight I had started going to the loo a little more frequently, but not to a level of concern !!!!!

We have one body, one life, don’t let someone else play ‘God’ with it !!!!

Follow your instincts , hopefully all will turn out ok, but keep fighting to get seen, you are just as important as the next person.

Very best of luck 🍀🍀🙏 xx

[lesleysage]

Hello, lots shared above; this community is great for openess and honesty. My suggestion is always remember the Ovacome freephone helpline 0800 008 7054 is there for warm support and evidence-based information. Often invaluable when emotions are flying all over the place! warm wishes, L x

[Cumbrianlass5]

Get bolshy. Write to your GP and copy in the practice manager, the oncology department at your nearest hospital and your MP. I went to my GP with a pain in my right side which I thought was a kidney stone and had erratic bowel movements. She did a blood test and organised an ulrasound within days. CA125 was 147 and I was eventually diagnosed with high grade stage 4 cancer. Keep pushing, write to your nearest hospital trust. Do whatever you can to make your GP sit up and take action. Best wishes x

[Plimsolls_on in reply to Cumbrianlass5]

OK, I got a call at 10am this morning, I am going in and seeing a real doctor at 10am Monday. Also, I re-read the NICE guidelines for GPs; always offer blood test/US - and do them for women over 50 with any of the symptoms, so that's good as I am both. I will press for a 2 week referral - I did find my own breast cancer and had to badger the GP to get a referral so I've got form. Thank you for your support.

[Flute_7]

Hello, really glad you have got an appointment, I have everything crossed for you 🤞🏼🤞🏼🍀🍀For reference you asked about symptoms, I believe on Ovacome’s website they refer to the following :

B - Bloating that doesn’t go away

E - Changes in your eating pattern

A - Pain in your abdomen/pelvic area

T - Toilet changes (more frequent etc)

All the best xx

[Worsuz]

Pleased to hear you are persevering. My wife was incorrectly diagnosed and treated for IBS for at least a couple of years. Lots of trouble going to the toilet and also really bad haemorrhoids we’re the symptoms . She was operated on under GA three times in that period (injected with Botox to numb the muscles and help her go to the toilet etc). Even with a lot of family history of breast cancer they never did a CA125 test until eventually we ended up at A&E with severe pain, suspected kidney stones and it was then that they did blood tests and found CA125 levels very high (about 4500). A scan revealed an ovarian tumour over 20cm in size, stage 4 OC was diagnosed. If it had been picked up earlier the stage wouldn’t have been so advanced and we’d be in a very different place now. Wishing you all the best with your investigations, you are right to push and the advice you’ve been given to request a CA125 test is spot on.

[Heart12345]

GP can send you to a and e for emergency ct scan with a letter as well as arranging for specialist to see you in two weeks. Obviously as well as ca125 blood test. Please remember if it is ovarian cancer there is lots of treatments etc available that can help. Good luck.

[Sue-333]

Sorry to hear you are being put off like this, definitely push for a CA125 blood test and complain if necessary. Either chase with your GP or through A&E.I didn't have any pain although many women do, I had persistent bloating, large tummy in proportion to the rest of me, more frequent urination, tiredness and smaller appetite. I didn't know these were symptoms of Ovarian cancer and didn't connect them at all. Went to GP because of large tummy, he assumed it was fibroids and suggested a scan - which meant waiting 3 months! I said no, I'd pay if I had to (didn't have to), and had scan 2 days later. Very glad I did as tumour was very close to bowel and a longer wait would have meant tumour infiltrated bowel, as it was tumour was removed without touching bowel. Don't wait or put it off, better to know what you're dealing with and get some treatment asap if it's necessary, might not even be cancer...

[Plimsolls_on]

Thanks.. I saw the GP today and he offered CA125, and then ultrasound if it came back positive, I said No, I want both, he agreed. I had the blood test today and just waiting for U/S date.