Diagnostic Delays

[Jackie0]

Interesting article on the front page of the Telegraph today with regards to delays in Cancer diagnosis resulting in the cist of thousands of lives.

Specially focused is those patients presenting with persistent tiredness, who N.I.C.E. are now recommending should be fast tracked within 48 hours for Cancer tests.

This was me!! But fobbed off by GP saying I probably had M.E and should visit a up port group!! Then two years later when presenting with severe lower abdominal pain was again fobbed off with probably Irratable Bowel syndrome!!!

By the time I was finally diagnosed it was stage 4 .

This is sooo frustrating when all was preventable. We look to GPs for care and our lives are at risk when they under perform. Their inaction is costing th NHS millions of pounds when if only they went the extra mile it could be prevented.

Of course I am not including all GPs in my complaint, but as in all walks of life there are those who do their jobs well and those who don't, but when lives are lost there is no excuse.

Fortunately there is heightened focus now on Cancer prevention, for which I am pleased, unfirtunately it has not come in time for those of us who have had to undergo intensive surgery and arduous chemo

[kazrazmataz]

Hi Jackie, I too visited my GP practice on 4 occasions over a 6 month period, I first complained about IBS type symptoms. Nice guidelines say 'do CA125' if changes in bowel habit that are frequent ie more than 20 episodes in a month. Also states to do CA125 for ALL women over 50 who report IBS type symptoms and states it will probably unlikely this is the first time women over 50 have had IBS type symptoms. The next occasions I visited the GP practise was for fluid retention NICE say to refer women for CA125 and Utrasound for bloating. The last 2 times I had by then put on a lot of weight and looked 9 months pregnant, GP arranged blood test for Kidney function and then prescribed me diuretics. I went back after the Weekend as was putting on 2 pounds a day by that stage. She did call the hospital at this point and arranged for me to go in to have high dose diuretics under medical supervision. Was admitted to Gastro ward for suspected liver problems. NICE guidelines say women with Ascites should be referred Urgently to Secondary care (hospital). I have wrote to Target Ovarian and they are saying the NICE guidelines are not Mandatory so the difficulty is GP's are not regulated by a Clinical Commissioning Body. Target are campaigning about the issue and have put together a training module and currently have trained 11,000 GPS (way to go yet). I am currently awaiting feedback fro Target as to what I can do to campaign. One thing they say is they want our personal stories to help raise awareness. In my opinion what does not get measured does not get done and overworked GP's have lots of areas they focus on (including their budget).

A change in legislation is required to ensure the BE CLEAR ON CANCER best practice is followed across the board in ALL GP surgeries so the only way we can do that is lobby parliament.

[Hidden in reply to kazrazmataz]

I have to comment, I did have ibs symptoms but as my mother was ill, and needed care, I didnt have them investigated. I went to my gp who had me in hospital within hours. I have ct scan and was sent home to be recalled for op after a month. I had a partial hysterectomy which took ages to heal, and knew I was in for a second lot of surgery. It took the hospital twelve months to organise the surgery as they needed a gastro surgeon in situ in case I needed a bag. My gp was very supportive and still is, my problem was with the gynae team, gross neglect on their behalf. I have had recurrences and now go to my onc only/ Ths man is one of the kindest you could meet. I couldnt ask for better now. I dont see gynae team because mine is inoperable ie part of ovary left because I could have massive bleed. I could have gone the legal route but was too busy fighting for my life. I am glad I didnt because the stress of it all would have killed me/ So to make it quite clear, it is not always lack of guidelines for gps that is the issue, it is the arrogance of consultants who do not tell the truth and leave you between a rock and a hard place

[Aurelie]

Hi Jackie - fatigue as a first symptom of OC has been a bee in my bonnet for some time. Several months ago I posted the question on this forum, and of those who responded, almost all had experienced fatigue as a first symptom before any other symptoms appeared. In my case, this was at least two years before I became symptomatic.

When I asked my oncologist's registrar if GPs would consider testing for OC - as well as for the more usual conditions such as anaemia etc - if a woman presented with fatigue alone, she told me it would never happen, so it's a step forward that NICE are now advising this should be done.

I had fallopian tube cancer, which was caught early, and am currently in remission, but still had to have chemo. Didn't see a GP about the, at times, overwhelming fatigue - was just was puzzled and put it down to the ageing process!

You may be interested to read about the '4 year window'. According to the article, during the 4 year window the cancer is the size of a black peppercorn, and remains that size for 4 years before becoming more aggressive. The fatigue I experienced fits in with this time-frame. Don't know what happened with this - perhaps the research was abandoned for some reason, but it is an interesting concept.

So very sorry you weren't diagnosed until stage 4. Hope treatment worked well for you and that you are in remission.

Jill xx

[EnaC]

Hello Jackie l also experienced fatigue as a first symptom before any other symptoms appeared.

I did have many blood tests but not sure if any where for cancer.

When I did develop other symptoms I was referred urgently to the hospital.

My first time I had a borderline ovarian tumour. The second time stage 4 ovary cancer in my lungs.

I agree it is great that there is a greater focus on cancer prevention now

[thesilent1]

Hi Jackie, i had fatigue too but like others put it down to getting older, working full t!me in a stressful job etc. I presented at my GP in Jan 12 because of this. After some blood tests that were repeated 3 times, it was decided to commence me on Levothyroxine for underactive thyroid. I managed on this, didn't lose any weight which I though I might have (had put on quite a bit), when I presented at GP on 6 Feb 13 with fatigue and low abdominal pain, she didn't follow NICE guidelines and do blood test, she did however send me to our local hospital. They didn't do them either. It was another 3 months before they were done and it was only because the consultant surgeon I worked for got me a private appointment with a consultant gynaecologist who specialised in oncology.

I have been told that NICE guidelines can only be recommended but are not compulsory for GPs to follow. Didn't help me that although guidelines were issued in April 2011, they were not disemminated to GPs in NI until Feb 14. Too late for me!

They should be made compulsory in my opinion.

Best wishes. Ann xo

[Jackie0]

Totally agree with you Ann, what is the point of having guidelines if they are disregarded??

Interesting to read that you have an under active thyroid, me too!! Seems the symptons may cover a multitude of sins including, old age, m.e , depression and lastly the big one Ovarian Cancer!!

I think that the time has come for us to stop relying on G.Ps and to take responsibility for our health care. Best wishes and enjoy your Sunday roast xxxxxxxx