Sister aged 47 has had following symptoms for 3-4 weeks: bloating, pelvic pain/ pressure, abdo pain, loss of appetite, fatigue and weight loss. GP has so far prescribed Canesten - no effect, taken a swab - results due tomorrow. She had a U/S scan 18 months ago for similar but not so severe and urinary symptoms, it was clear. Would I be right to demand the GP does more immediately?
Should we be pushing the GP to do more? - My Ovacome
Should we be pushing the GP to do more?
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Rhoscot
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Hi, I would definitely be pushing the GP. My own personal experience was that I was going back and fro my doctors from March 2012 to Sept 2012 with urinary problems and groin pains, I was told for 8 mths I had UTI's and IBS,. By Oct I looked pregnant and went to my GP and said I think I've got ovarian cancer, they said that I could have a scan to put my mind at rest, before my scan letter came in Oct I was very ill and in severe pain, was rushed to hospital and to cut a long story short was diagnosed with ovarian cancer stage 3c in Dec. Ifeel so angry with my GP and haven't been there since, so yes push your sister's GP, I really hope that it will turn out to be something simpler and she'll be ok, sorry to go on a bit but I feel really strongly about GP's not taking enough notice of symptoms. All the best, Love Kaz x
Kaz I'm so sorry. To hear. Your story. The 'what ifs' must weigh on your mind constantly. The three responses I've had on here have made me more determined to be pushy, even if my sister is embarrassed by me!
I too have being going back and forth to drs fro 2 years with pains from neck to pelvis and my stomach so swollen i also looked pregnant,he keeps saying its IBS .I odnt cos I don't have any problems with my bowels but he says you don't necessarily have bowel problems could be just bloating.i have gained 2stone in 2 years and don't think bloatign would cause that much weight gain?it has led to arguments with my DR .sicne I ahd my gallbladder (he didnt diagnose gallstones)out he says am I now convinced its not cancer or a cyst.told him yes btu I am not convinced.he says I don't have thyroid problem or lupus despite having symptoms because he says bloods are normal.so I had to see him before getting print otus of my blood results and he said I wasn't to turn to internet to get answers and to talk to him .isaid I only talk to people who have the same problems as me cos people I know don't understand how fibro etc affects me.idont wnatto get "pushy" as he might refuse to have me on his books.
Yes Absolutely. Ask them to get a blood test done CA125. Whilst this may indicate nothing (I hope this is the case for your sister) if it is raised significantly then they can start further investigations. I must stress that a raised CA125 does not mean your sister has Ovarian Cancer. A raised result can indicate many other things but at least it can then be ruled out and if it is something more serious, then you can get the right treatment. Dont worry about looking foolish. If you kick up a fuss and it turns out to be nothing serious (fingers firmly crossed) at least you will know. I would rather look stupid than wait for my Dr to go down lots of blind alleys first. I have heard of so many women (probably many on this site) who have spent months trying to get a correct diagnosis. Perhaps you need to wait for the swab results first but if these are inconclusive or the symptoms dont go away then do push. A normal result for the CA125 is between o - 37. Very best of luck. Thinking of you. JacJac
Hi there. Just wanted to let you know that my diagnosis was delayed as I had an abdominal (not pelvic) ultrasound which was clear. GP suspected gallstones. Then no further tests for 9 months despite symptoms as she repeatedly told me my scan was clear. In the end I paid for a private MRI but that also showed nothing. It was thoracic and lumbar MRI not pelvic. I finally ended up in A&E a week later and a CT showed what I was dealing with. Stage IV and I was 38 years old.
Thank you so much for your response and - apologies to all. I didn't quite realise I was posting on a forum where people have all these concerns of their own; I thought I was asking a question of a health professional.
So, if I'm understanding your experience correctly, I should ensure she has a pelvic ultrasound. I don't want to say anything trite, so just thanks again for answering.
Oh dear don't worry we are all here for each other and anybody else that needs us. Many many people enquire like this and many don't have anything horrible.
Definitely push untill you are satisfied.....this is a disease you don't want to take any chances with.
Take care
Charlie xxxx
Niice guidelines advise all women over 50 with these symptoms to have CA125 test but your sister is younger. My GP surgery gives all women with persistent abdominal symptoms the test. If raised that should trigger a CT scan. I never had an ultrasound but understand that it is less likely to show up extensive disease than the CT.
If your sister is truly worried she should press her GP for further tests and a gynae referral. Even here, and Leeds is a centre of excellence, I have heard that some people get overlooked.
I should have said I ignored my symptoms for ages because I just thought it was ageing! I too looked pregnant (at 69 with not a camel or an angel in sight and after a long period of celibacy this was most unlikely) but it was only when I could not eat (quite literally) that I saw my GP with serious intent. I was fast tracked and diagnosed at stage 3c. Within 6 weeks I was on chemo. That was 4 years ago! Two ops and 2 lots of chemo later I am still here and doing fine. I start my next round of chemo next Monday and, meanwhile, I am preparing to host a group of Ovacome members coming to York in 3weeks. We all met originally at members day and we are all fighting on.
The point of this is at while this is a horrible disease it is not the end of the world. It has helped me to focus on what is important to me and I have just renewed my annual subscription for Opera North and that runs through to next June. At my age my contemporaries are dropping off their perches with unfailing regularity! I do not intend to join them just yet! I might have to talk to David Frost and I never could stand his whiny nasal voice on TWTWTW!
Do make a fuss! Reassurance is important!
With positive thoughts and encouragement from one of life's bolshie old cows!
Margaret!
hi Margaret,its my dr thats ignoring my symptoms.i look like i am several months gone and my stomach is getting bigger by the day.l do eat but its only breakfast adn small lunch,no biscuits cakes puds fried foods so weight gain is not thru diet.still wont say what to do about it if it is bloating or is it worse following gallbladder removal(KEYHOLE SURGERY)
My advice is slightly different and based on the fact that 32% women are diagnosed through A&E, I would go straight to them, as every unit has an acute oncology unit. I went in through this route as many women in my peer support group did, it took an ultrasound and finally a CT scan five days letter, to be told that I had OC. The problem with OC symptoms is that they are a mix of symptoms that can be, explained away by all sorts of things. I know that I had explained all my symptoms to myself as IBS. I was finally staged at 3C after my operation.
All the very best, but if your sister has had persistent bloating that will not go away that could be the most significant symptom. I had persistent bloating for about two months to the extent that I could not bend down and do my shoelaces up. My tummy was also quite hard as well, not soft like it now is.
All the very best, if you stick with GP, then you should ask for CA125 and ultrasound.
Love Wendy x
Dear Rhoscot
I would echo the advice of others, my experience was similar misdiagnosis over a couple of years...I can only add that, if your sister wants some documentary evidence that she is not making an unnecessary fuss, there is a symptom tracker on ovacome.org.uk It's on the right hand side of the page, under BEAT symptom tracker. You can record symptoms over timescales and print it out to show to the GP. There is also a helpline number on there. 08453710554 It's open 9 to 5, Mon to Fri
I would say, like the others....make a fuss, it's too important not to!
Good luck to you and your sister
Love Wendy xx
Dear Rhoscot, I rather feel that you will be unable to take things into your own hands on behalf of your sister so I do hope you can urge her to take responsibility for this situation. She has symptoms that should be addressed. Let's hope it's something that can be resolved quickly and easily. Nobody should ignore symptoms if there's any chance at all that it could be cancer. My own experience 2 1/2 years along the journey, and one that is shared by many health care professionals and politicians, is that patients need to be discerning because many of us have to make a case for the best treatment. If your sister doesn't start shouting for her case someone else will get to the top of the queue.
I hope in reading the posts here she is inspired to march back to the GP and ask what they're going to do for her.
Best of luck with this, and love to your sister. It's a very unpleasant time having worrying symptoms if nobody seems to be doing anything about them.
xx Annie
Yes ...... Don't accept any fobbing off.
Don't hesitate to do what your instinct tells you. If unhappy with GP (and I recognise all those symptoms) go your A & E straight away, where they will run all the right tests. It works. Thinking of you x
Hi. I am a retired GP who also has a variant of ovarian cancer. If your sister has significant unexplained weight loss, then this should be investigated urgently. I suggest an urgent gynaecology referral is required - sounds like it to me. Weight loss requires urgent investigation to find out the cause, especially with the other symptoms she has.
Best wishes. Sorry didn't answer before - just back from holiday.
Eileen x
hello Eileen
I read your response to Rhoscot/I have exactly the same symptoms as her sister but have had mine for 2 years and not been told anything -only know that ive had ct scans which say everything is normal and i had my gallbladder removed by keyhole surgery a month ago so wonder if problems are exasperated by the op.,i had no follow up appt to my operation.
hello Eileen
ahd scans that were normal but it was because my dr wasn't given me any answers etc and I read true stories in magazines and on internet sites like this one -that cysts and OC dont always show .
Sorry for late response - catching up with posts. Yes, yes, yes, please push for more, at least a CA125 test and mention concerns about ovarian cancer. These are all symptoms my sister had too - she was fobbed off for over a year (bladder infections, IBS, virus etc) and ended up in A&E with a diagnosis of Stage IV OC after breathing difficulties. She was just about to have a private scan done as we were so worried but she ended up in A&E first. Sorry as I don't want to scare you or your sister but if I could turn the clock back and been more aware I would be stamping my feet and insisting that more be done. I feel that I have let her down.
Love to you both
Mel & Carolyn x
Please don't feel you let your sister down, my story is very similar, eight months of being told IBS, UTI's, etc and ended up in A&E, stage 3c ovarian cancer, my husband has said he feels he should have pushed more and feels he let me down, it was the GP's lack of knowledge that let me down, as with your sister. You seem to be a wonderful sister, and I have a wonderful husband, take care of yourselves,
Love Kaz xx
Bless you Kaz for your kind words. Its so hard not to feel you could have made a difference which I'm sure your lovely husband will understand. My mistake was trusting the medical professionals that she saw and was dismissed by but never again. I hope you are receiving the best possible treatment now Kaz.
Love to you both
Mel x
Hello Kaz and Caramel and thank you so much for your time. Apologies if I've posted this response already, I'm not gat at this!
My sister's GP is now querying PID and has sent a swab away. She's been started on antibiotics while we await results; the surgery is now closed 'til Tuesday. She feels a bit better and is at least eating a big, having lost a stone and isn't so sore, but I'm not convinced. I'll push it again after Tuesday.
I'm so sorry that as well as people shaving to cope with the disease, they have to cope with regrets and what it's and the frustration and ange of being ignored or having their symptoms minimised. I don't understand why GPs don't start by ruling out the worst it could be and then scaling it down, It's not like the tests are invasive or expensive.
How are you now Kaz and Caramels when did this happen to your sister?
Rhona
Hello Rhona
Yes that's exactly what I don't understand - rule out the worst first and then look at less sinister things. I'm sure I read somewhere that the cost of a CA125 test is about £25 which isn't much to pay for the reassurance that you haven't got this disease. I know a high result doesn't necessarily mean the worst but its a good place to start.
My sister who is 49 was finally diagnosed in January this year and has had a roller coaster of a year so far.
I'm so sorry if all these replies are frightening you and I'm sure that your sisters diagnosis will turn out to be something different and she will be better soon. We were told that ovarian cancer is apparently rare which was why my sisters GP's failed to join up the dots but that's a poor excuse to hide behind in my mind.
Well done you for looking a bit further and trying to get answers of your own which could make a real difference. I wish I had done so. Your sister is so lucky to have you.
Keep pushing Rhona.
Love to you both
Mel
x
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