Hi All 😡 I am a nurse of 30 years in the NHS, and presently I am concerned about my friend, who is struggling with the thought of having Ovarian Cancer. She has symptoms, a rising CA125, and is really worried about it. Her/ Our GP is amazing & very thorough. But despite her Urgently referring K to the hospital Gynaecologist & a CT/MRI scan, the Gynaecology department are saying a scan is not required!! As an experienced health professional, and a friend, I am disgusted with this treatment! I understand, first hand, the stress the NHS has been under during Covid! But there are standard levels of care which should be met. Obviously I will be there for her through good or bad. But I am ashamed, as an NHS worker, about the way she is being treated right now ðŸ˜
I have read some of the posts on this site about other ladies journey's, and it upsets & scares me. More attention is required to [ovarian cancer].
I wish you all the best x Keep fighting! x
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Jaxxony
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Insist on a scan. I was eventually diagnosed in 2002 my lovely doctor sent me to hospital several times and asked for a scan which didnt happen. Amongst many symptoms I had to keep having a pee and hospital focussed on this said it was due to childbirth 38 years before. Eventually I started to bleed so they had to do an ultra sound which showed two very large tumours on ovaries and ascites. Dont know how your friend can get a scan but please please push for one. By the way my CA125 was not over the limit.
I got a referral to a hospital for a scan quickly. Then no treatment for 7 weeks as this hospital had to refer to another hospital who dealt with OC. Hideous time left with massive ascites, 3 drains required. Phoned CNS at OC hospital and she told me ‘your not our responsibility, go back to your original hospital’. Ive never got over the terrible and terrifying time I had, despite coming through it all (1 yr post chemo and doing well). I’m sorry, I dont love the NHS like i used to.
You have to insist on a scan. I was going to my GP from January to May 2018 before I was actually diagnosed with late stage OVC 3. Had I known more/anything about OVC 5 months earlier I would have paid for a private scan. My CA 125 was 210 at diagnosis and has never been any higher yet I have had 3/4 recurrences. I’ve lost count.
Please insist on a CT scan. I had an ultrasound first which picked up cancer I assume then I had a CT scan revealing incurable cancer.
Just to echo all of the above, literally jump up and down until you get the scan...they scanned me and still wanted to wait for three months to establish any growth! It was only the discovery of a blood clot in my pelvis that prompted quick and further treatment, while I accepted their initial plans to wait....!
so understand your concerns, would suggest talking to PALS or make a formal complaint and link back with your GP to push, i know you won't give up and i'm there right behind you x
Hi, I know how you feel, having had a close friend ignored for so long and just now accepted in with serious grade. She should lay all the symptons/pain on really, really thickly to be taken seriously as well as insist on 2nd opinions. If nec call an ambulance (due to 'severe pain') and fast track to A and E as this could be a matter of life and death and should be taken more seriously than a kid who's sprained their ankle on a trampoline! (I've been in A and E a few times with said kids and they jolly well get sorted, scanned if nec, there and then!) Good luck, I'm sending prayers your way, for you and your friend. xx
Yeah this is unacceptable. I live in france...paris...if I need a scan I ask they book it. Some of the posts on this site are very troubling. Every hospital has had to deal w covid...here however cancer clinics function separately and don't stop protocols due to covid they just take more precautions.
Get on to PALS (they are wonderful), write to your MP, go to the hospital press office (some places it is called communications office), write to the chief executive of the hospital and the head of the hospital trust, go to a local newspaper. Do anything you can to stir them up. Your friend needs a scan. I had to get bolshy but got one in the end x
Hi JaxxonyI am so sorry to hear about your friend...please encourage her to complain, stamp her feet anything that gets her the investigation she deserves. Sadly you will find so many women here who have similar stories. I love the NHS but part of that appreciation is to keep pointing out when women are failed because (mostly male) consultants don’t take them seriously. Even the equipment in hospital (I have tested rigorously lol) beds/equipment even oxygen masks are made for men! Things must change xx
I was in pain and went to A&E. (GP had requested a scan for about 6 weeks time which was far too long to wait given the pain I had). Went into A&E at 2am and by the evening I 'd had a scan and was diagnosed. Ascites removed ( 6 litres) then chemo started.I'm so pleased I took advice from my son and his wife who are doctors. You must get it sorted soon. xx
I'm an ex nurse and have felt the same at times during the course of my investigations (eventual) diagnosis and treatment. Despite all the attempts to highlight ovarian cancer it still seems as if its at the end of a long list of potential diagnosis that are considered.
As all the other ladies have said it sounds as if your friend needs a scan. If she can afford it I would suggest asking the gp for a referral for a scan to be done privately.
I would also suggest a ct scan rather than an ultrasound. I had an ultrasound, it was painful as the girl passed over the areas that had been troubling me ( which later turned out to be disease in my peritoneum ) but the result came back as normal.
2 months later I had developed a limp and a ca125 and ct scan were finally done.
I would also like to add though that there have been some real gems in the NHS on the way too, who have gone above and beyond to help me and I'm so very grateful to them.
All the very best to your friend and it's great she has you in her corner.
After being back and forth to GP with various 'gastriclike' issues with varying degrees of interventions ranging from ultrasound for gallstones despite having no gallbladder as it was removed 2005! To doubling up on Omeprazole and Gaviscon for two weeks in October 2018 which did ease symptoms. By March 2019 I was getting no respite from a soreness across my upper tummy and down my right hand side of my tummy.(having lost a work colleague to Pancreatic cancer in Feb 2019 it was this that spurred me on to force the issue.Yet again it started with an ultra sound which I was relieved to hear didn't show anything on my pancreas however that didn't change the fact I had I still was very sore. I happened to mention I had for sometime been having a sense of constipation but when I passed a motion it was a normal consistency and not what I would expect if constipated GP requested Ido a sample the results from that came back and I was put on a 2 week letter for a bowel consultant. I recieved the letter from the consultant stating based on all the results the GP had passed to him he wanted me to have a bowel ct scan appointment 18th July. 3 weeks after this I was given a Sunday morning appointment to see bowel consultant who came into my husband and me and leant against the exam bed in the room and said Iam sorry it's not good news something has shown up on your pancreas to say we were floored is and understament. I queried could it be anything other than cancer he told us it would be highly unlikely to be anything other than cancer but he needed to pass me onto a pancreatic consultant to look into it. 11 days and a abdominal ct scan later we were called into see him and he said he didn't think it was on my pancreas but on my omentum and likely to be secondary cancer to ovarian primary. I felt elated it wasn't pancreatic but he played my elation down with suitable words of warning and referred me on to gynecologist where I underwent further vaginal u.s. scan pelvic ct scan needle guided biopsies numerous blood tests resulting in a diagnosis on 23rd September 2019 of Stage 4C Primary Peritoneal Cancer which comes under the umbrella of Ovarian Cancer as it mutates in the same way. I had no traces of any cancer in my reproductive organs or pelvic cavity. I had my first chemotherapy on November 1st 2019. I had debulking surgery on March 4th and was discharged on the general 'get everyone out of hospital day' 14th March with a small break down of the incision which developed into a major infection taking 6 months 3 daily visits from district nurses to heal and chemo recommenced in October 2020. Iam now on Avastin.The waste I see in NHS with duplicate letters even duplicate appointments I have had on different days. Wasted prescriptions because somebody decides to try this or that that doesn't work or they hadn't checked your allergies before it was issued. I don't believe the NHS is bad but it could be a he'll of a lot better. Without question its biggest assets are it's nurses. In every aspect of my treatment from A&E to chemo nurses and everything in between I have had from them the highest degree of care and compassion. Doctors have been a little bit hit and miss on that level. Probably more good than problematic! NHS We are lucky to have it but it could be so much better. Sorry for such a long one but I have never listed any of this before. I have had other hiccups along the way which are nothing to do with the service I have recieved. Sepsis and blue light into A&E after initial bowel ct scan (UTI) 1st chemo caused unstable BP which dropped and I drop fell and corkscrews my lower causing a break to my fibula and ripped ankle ligaments resulting in being in a non weight bearing cast until the end of January 2020. Had an allergic reaction to Pacitaxel and developed an allergy to penicillin resulting in me being covered from head to foot in a hot flaming rash! Apart from that I've done ok😃Have been having counselling just recently as McMillan nurse felt I was showing signs of post traumatic stress. Help is there it just shouldn't be this hard to get onto the right speedy path. Thank you for your 30 years service to the NHS .x
Go to A & E if you have to. I had to insist that my gp refered me after being diagnosed over the phone with gastroenteritis. Turns out I had a huge gastro intestinal tumour, known for short as a GIST. Had it removed along with complete debulking surgery last October 2020. It took 5 months to get from A to B and it could have ruptured at any time.
There's a lady on the Facebook Ovarian Cancer UK group who is struggling with a situation similar to this. We know the NHS resources are at full stretch and have been for over a year (and in fact for a long time before Covid). But the negligence which some patients are encountering is inexcusable. And we don't all have the inner resources to fight a battle, especially when we're already ill.
I despair too. In the last year I've watched a loved one die because of untreated cancer - sent to the wrong ward, etc. etc. etc., as relatives were excluded because of COVID. I was only ever on the diagnostic side, but I worked as a nursing assistant during holidays and loved the experience of being in close contact with patients, having time to re-assure them and make them a cup of tea.
That seems to be gone now. I've seen nurses stretched beyond human endurance as doctors walk around like zombies. Some doctors are going above and beyond to do their job, whilst others are obsessed by the mantra of taking care of themselves first. It's not the NHS it used to be.
I've probably said too much, so I'll say no more, except bless you and all those who are struggling at the frontline.
Absolutely must insist on a scan. This is outrageous. If there’s any chance of catching is early it must be taken . I wish I had. 3a could have been stage 1 .
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