Update re ibuprofen, aspirin, etc

[drdu]

Hi all.

Just to say that I don't think I gave this link in my previous blogs. It is cancer research uk website on ovarian cancer, which says that aspirin, ibuprofen and other NSAIDs can prevent some cases of ovarian cancer. If they can prevent it, they are highly likely to prevent spread in those who have ovarian cancer or PPC.

cancerresearchuk.org/cancer...

They are not overwhelmingly positive about it, as you will see, but there is a lot of evidence out there, as I said before. By the way, even though the whole link is not shown, just click on it and it will work.

Best wishes to all.

Eileen xx

[Hidden]

Hi Eileen,

Thank you for the update, (and for tagging them) love x G x

[Hidden]

I haven't seen your story on Inspire - I'm sure the women there would love to read it. Have I missed it or can I help you post it?

Everyone needs to know about this. Cx

[drdu in reply to Hidden]

I have done my story on inspire. Probably not in as great detail as on here, but I gave them links to my blogs here. If you look under "drdu" on inspire you should find it. Will have another look at it, and check it out. They seem very keen on alternative treatments over there.

E x

[Whippit]

Thanks Eileen

I've just taken a look and sighed with frustration. I just don't see why the medical profession have to be so timid. If it's thought that aspirin or NSAIDs can help why not let everyone know and leave it up to the individual whether they want to try it whilst we're in a trial/research phase. For my part I'm happy to try anything that isn't likely to do any harm and as I'm generally in good health I feel it is fine to take medication so long as you read the small print.

It's just the same as the argument about CA125 and screening. How long do we have to wait whilst these massive research projects are being poured over and experts contemplating whether screening will 'save lives'. I was so cross to read a leaflet about screening which states, 'Before the a screening test is made available on the NHS it has to be proved to be accurate and safe'. I agree it has to be safe. There is already evidence that screening can detect Ovarian Cancer. It might not be accurate in 100% of cases but it would certainly save some lives.

As someone who had absolutely no symptoms whatsoever I would have liked to have been given the offer of screening and so long as I understood the risks and the possibility that there might be 'false positives' I'd have paid whatever it cost to have undergone health tests.

Funnily enough that's why I went to my GP 2 years ago. I told him that something had gone wrong and I needed some tests. My only symptom was fatigue and it felt strange. I would still lobby for annual health checks to be made available which look to monitor general health rather than what seems to be the current paradigm of waiting until something goes wrong and then trying to shut the door after the horse has bolted.

Sorry about my rant. Tell-tale tummy-ache has started so I think I'd better own up and see the gynae oncologist when I get back from holiday. Can't face dealing with it this week.

xxxx love to you all.

[drdu in reply to Whippit]

Hi Annie and everyone.

Yes, can't understand the reluctance to do CA125 tests. Not sure about routine screening, as it could give false sense of security, as I think CA125 can rise from normal very quickly. But yes, probably it should be done, even if it only saves a few lives, as it would be worth it for those people. I think GPs should be far more ready to do CA125 when symptoms suggesting the possibility of OC are present, as it is easily done. Very annoying. As you say it does not completely rule out OC/PPC but it would still be useful.

Yes, your CA125 should have been done far earlier than I gather it was.

[Whippit in reply to drdu]

Oh, I must speak up for my amazing GP. He managed to spot the problem within a couple weeks and the only clue I gave him was the above. I merely told him something had gone wrong and I thought I needed tests to work out what it was.

I was referred to a gynaecologist very quickly and he took the CA125 test without explaining its purpose. If this can be done why not just include it with other blood tests for good measure for all women over the age of 50. If it's a false negative no one would be the wiser. If it's a true positive then action can be taken. I wonder if a CT scan every few years would really do that much harm. My leaflet on screening says the only way to confirm without doubt a diagnosis of Ovarian Cancer is surgery and this has risks. It just all seems so horribly negative and 'can't-do'.

Given our disease is outside a body of understanding nobody should expect the medical profession to get it right every time but a few 'rights' would improve the general situation at the moment.

xxxx love to you all.

[drdu in reply to Whippit]

Sorry Annie. meant to say love and best wishes.

E xx

[drdu in reply to Whippit]

Sorry again, Annie. Have now read your story properly, and you did get early CA125 test. Yes, maybe screening would have got it earlier.

All the best.

E xx

[drdu]

Yes, the medical profession is very slow. Have emailed Lord Saatchi, now that I have got his email address, and so hope that I get some response, as I didn't from my letter in early January. His wife died of PPC, and so you would think he would show some interest. Seeing my oncologist today, and so will see what she is saying.

Best wishes to all.

E xx

[Hidden]

drdu & Annie,

I am trying to campaign for the signs of OC to be noted on the reverse of the letter that calls you for cervical cancer screening and mammograms. Cervical cancer screening covers everyone over 25 - 20 in Scotland. I think this would be a big help. Maybe ALL the gynae cancers could be covered.

Everyone I have talked to about this thinks it's a good idea, but how do you get action? Maybe I should write to MP/health secretary.

I had uterine fibroids which have very similar symptoms to OC. Had I known that I also had the signs of OC I would have made sure I had a test and been diagnosed more than a year before I was.

Oh well, off to walk to dogs.

Cx

[drdu]

Sounds a great idea Crystyn. I suggest you write to your MP and the health secretary. Maybe we all should. You have my support in that anyway.

Eileen x