ovarian cancer symptons: I have fibromyalgia... - My Ovacome

My Ovacome

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ovarian cancer symptons

anbuma profile image
13 Replies

I have fibromyalgia since 1998 tho officially diagnosed in 2005 It took that long!! oct 2011 I went to my GP with painful protruding ribs and in april nasal infection followed by -in june 2012-hard pea sized lumps in my mid abdomen which were very sore and painful esp at night when in bed.since then things have got worse and lumps have spread to my pelvic groin region,

i have all the symptons of ovarian cancer -pressure on ribs-weight loss swollen and ever increasing abdomen,cough (since oct) loss of appetite being only able to eat breakfast and a small amount at midday and lower back pain..one dr I saw said "its all in my imagination' WITHOUT HIM KNOWING ME or even saying anything to him and I walked out in disgust.

I since feel my own DR is not listening to me as he does not acknowledge my symptons and when I got a copy of a referral letter he sent to rheumy it did not list details of appts between sep' 09 and apr '12.so there is probably no record of onset of my symptons my rheumy said as I had gained 11 kg in 7 years I should see a dietician .my reply was I have recently lost weight and any weight I have gained is all abdominal.i told him I never ate cakes biscuits puddings or much fried food therefore dieting(cutting out the above which i dont eat)would make no difference.

I was to have a meeting with the practice manager and my Dr last week but the P M was sick.so am waiting fro her to call me to arrange another appt.i still saw my DR who said my back pain was muscular. no one has arranged any x-rays or more scans.he refused to do scans as I had some a year ago which were normal regardless of the fact that things worsened since them

because the details of appts were not included in the referral letter is there no proof that I had these appts and why were they not included in the letter.

no one has given me a reason fro protruding ribs and the pressure on them and rheumy said there is no need for x-rays.i have been told that 'I CAN'T" wheni asked dr to do more scans.and the rheumy wrote in his letter to my DR that " SHE FEELS SHE HAS FATTY LUMPS" when I told him I have hard painful lumps spreading around my abdomen.they don't say " SHE HAS ....." Which proves no one is listening to me.

my only option now is to go private as I am really concerned I do have cancer and no one is recognizing the symptons.

does anyone else have these issues or the same happen to them.

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anbuma profile image
anbuma
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13 Replies
wendydee profile image
wendydee

Hi!

Welcome to our group. It's worrying to have to be here but you will find lots of support. I would say you need some evidence. Go to the Ovacome main site (this is linked, but not the same thing) on the left, you'll see a tab saying BEAT ovarian cancer with Ovacome. Scroll down and you'll see a link to the BEATonline symptom tracker. Fill this in for the next few days, weeks, whatever until you have some evidence. GPs should take notice of this. It will give you evidence that is backed up by Ovacome's research into symptoms of OC. There is also a NICE document on symptoms of OC. My computer packed up this week, so I can't email you a link, but I am sure someone will. It sets out the pathway for diagnosing and treating OC. To summarise, I think this is: physical examination, ultrasound scan, Trans-vaginal ultrasound with sometimes a back up of a CA 125 blood test done, but this can give variable results.

A lot of us have to fight to get our feelings that 'something is wrong' properly acknowledged, but I think it may be worth persisting with your present GP practice unless there is an easy alternative. You shouldn't have to go privately.

On Monday, there will be a nurse, Ruth, in the Ovacome offices who is very informative and knowledgeable and will help you. She is on 0845 371 0554 from 10 till 5 Mon to Fri.

Good luck, and I know it's hard, but try not to panic. You will get the help you need soon, with the help of Ovacome, the BEAT tracker and the helpline, and others on this site.

All the very best, and sending a big hug (((xxx)))

Love Wendy xx

anbuma profile image
anbuma in reply to wendydee

thanks wendy.for your advice etc

anbuma profile image
anbuma in reply to wendydee

Hi wendy

have completed the sympton tracker and keep it as evidence.

Lily-Anne profile image
Lily-Anne

I would change GP immediately. I saw my doctor in January 2012 and was sent away with pain killers, after being passed off for too long, I changed doctors in June 2012, but the pain had settled in July it came back with a vegence so I saw my new GP she sent me for a scan, luckily it was stage one, so caught early, but my treatment would all be over by now and I wouldn't have had to suffer. Now I wouldn't hesitate just to change practice if I was unhappy. Setting up a meeting at the surgery just delays your treatment.

Today someone has come into my shop, we were chatting while I waited for our receptionist to arrive, and she has bowel cancer, terminal, because her GP wouldn't listen, the same GP I used to have! There is no guarantee it is OC, but you need to rule it out.

If you are in pain then a&e can be the answer. I wouldn't hesitate now I'd jump up and down until someone listened.

Best of luck

LA x

I completely agree with - but would add a step.

First get evidence - the symptom tracker etc , go through the process. i found the nice info on OC for you: nice.org.uk/nicemedia/live/...

Next: kick off at your GP practice - but do it the right way, do NOT let them put you down as hysterical. Here is link to the official "how to make formal complaint about your GP": nhs.uk/chq/Pages/1083.aspx?...

Communicate your serious intention to do this and the fact you are knowledgeable about the process. I would hope they would think again and take you more seriously.... If they do not then go ahead and make that complaint, AND change GP. Again, I would hope a new GP would respect the process you have gone through and be a lot more understanding.

With any severe pain though, Lily-Ann is spot on - no messing, get to A&E.

Hope that helps. So sorry you have this worry :(

Love

Sue xxx

I think you should request a blood test (ca125) although it is not a reliable indicator in some people it is in others (and it was for me) so worth having one and will art least point you in the right direction best wishes love x G x

anbuma profile image
anbuma

thank you gwyn. I have had this blood test and others for some time.the test for CA125 was slightly raised.so my DR was going on that basis.i have just found out on the internet that it is unreliable so shall arm myself with this when I see my dr again.

citrine profile image
citrine

Would you be able to take a friend or family member with you to see your doctor? It does help if you have somebody there to fight your corner.

Really hope that you get this dealt with very soon.

Best wishes

Love Mary x

Whippit profile image
Whippit

Dear Anbuma

I'm so sorry you have all these worries and you're feeling they're not being taken seriously. I think Wendy, and all the others have given you some really good ideas. I did think immediately that you should change your GP practice.

There is clearly something wrong and this needs to be dealt with. They are reluctant to give you scans for good reason. Have you phoned the Ovacome Helpline? They're so knowledgeable and helpful and I'm sure will have some good advice for you. It would at any rate just be good to talk to someone with so much experience of ovarian cancer. GPs on average only come across this 3 or 4 times in their whole career.

I do hope you get this sorted out to your satisfaction and hope with all my heart that it isn't Ovarian or any other cancer.

love Annie

anbuma profile image
anbuma

thank you Annie.i haven't phoned them as yet.i am waiting to see a private doctor.i am not saying i do have it but all my symptons are that of ovarian cancer.i hope to sort the issues with my DR out at a meeting with the practice manager and him and get across that they\ are not explaining things or listening to me.

wendydee profile image
wendydee

Try to print out the symptom tracker so you have some medically approved evidence of what you have been experiencing. It may help at your meeting.

Good luck

Love W xx

anbuma profile image
anbuma

hello wendydee

will do.i have sent basic medical questionnaire along with copies of the symptom tracker to the private gp so they can see how long I have had this.i haven't heard from the practice manager today so assume she is not back at work.i tried to phone the surgery today to speak to them about my medical history as they didn't include full history in the letter my DR sent to rheumatologist but it is impossible to get through on a Monday .there was a gap from sept 2009 to april 2012 .they did record that I had an abdominal lump in sept 2009 was this the start of everything?the most important dates are missing i.e it was oct 2011 when I first went to dr's with pain etc in ribs.

rose

anbuma profile image
anbuma

hello everyone

well I went to the private clinic today and had a god talk with the doctor and she arranged an ultrasound scan which meant having to wait around for 4 hours in Edinburgh.so spent the next 4 hours driving around and walking round shops. gynaecologist who did the scan said everything was fine as regards a cyst or tumour but I did have gallstones.could that be the problem? I still reckon it is a tumour or cyst even though they said my ovaries are fine as I do have lumps and they have to be growing(if that's the right word) on something and everyone I have contacted and things i have read say that cysts don't show on scans no one is listenieng that th e pain is spreading and nwhy I am in so much pain and discomfort.now my neck feels tight.will try and see a Dr on monday.again no one is listening that any weight put on is abdominal.i shall phone ovacome.i didnt get to show the symptons tracker to the doctor as my brother had it and he hadnt emailed it to the clinic.

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