Medical updates
Carol Morton's letter to NICE
Our thanks go to Carol who has taken the time to write the following letter to NICE following Shirley Michael's plea for help in the Spring issue.
Dear Mr Dillon,
Re: Paclitaxel & Cisplatin for the treatment of Ovarian Cancer
As your committee is shortly due to pronounce on Taxol, and I understand from Shirley Michael that you might welcome input from members of Ovacome, the charity for ovarian cancer sufferers, I would like to offer a consumer's point of view to add to your deliberations. I do appreciate the financial problems produced by this expensive treatment but also believe that there are other significant points which are a part of the whole issue which I am qualified to represent.
At the age of 51, in April 1999, I was diagnosed with stage 3c ovarian cancer and I consider myself to be one of the lucky ones in that I was prescribed Taxol and Cisplatin as first line treatment. After debulking surgery and 3 of the total of the 6 treatments which I received, it was found on CT scan that there were no residual nodules so there is no doubt that this combination of drugs worked for me. In addition, I am also on a clinical trial for yttrium 90 which will, hopefully, reduce the abysmally high likelihood of recurrence in this situation.
I have been concerned all the way through that not all people in a similar situation are as fortunate as I have been for the well-publicised reasons of cost. I have also become aware that because of this, many people are therefore not even informed of Taxol to avoid the terrible disappointment at then having to be told that while it might be the treatment of choice, it is not available because the health authority can't pay for it. This puts everyone - medical staff and patients - between a rock and a hard place and I do appreciate the ethical dilemmas medical staff face. It has also concerned me that arguments are creeping in claiming that the above treatment regime is too unpleasant to endure anyway and that there is no conclusive evidence that it makes a great deal of difference to the outcomes. The rationale appears to be that people should not be subjected to the unpleasant side-effects for an such an uncertain benefit.
My observations of the debate have resulted in the impression that these last two arguments have increased in direct proportion to the unavailabilty of the drug because of cost. While I can understand the medical world's good intentions in that they do not want to build up peoples' hopes or disappoint them, research does show that Taxol makes a significant difference to survival rates in a significant number of women. Obviously, I cannot be expected to be totally objective about this but I would like to suggest that there must be many others out there who, given the choice as I was, would opt for the potentially unpleasant side-effects and that they should at least be given this choice. I think what I am trying to say is to ask NICE to beware of latching onto side-effects as a case for not prescribing the drug. With a condition so notoriously difficult to diagnose and with such a long-standing poor treatment history, I would like to suggest that the cost for this drug is more than justified to redress the historical balance, at least until a less expensive and more effective treatment becomes available.
Another very important point is that not everyone has dreadful side-effects, anyway, many of which can be minimised by preventative measures if correctly managed. Once again, I was fortunate and passed through the treatment period with well-managed adverse symptoms and problems. For me, and I am sure many others, it was worth it and I do not regret the decision to go ahead with this regime of treatment in spite of the unpleasant side-effects.
In conclusion, and by way of a summary, I would like to suggest the following:
- That patients be informed openly and honestly of the best treatments for their condition, whether or not they are available, so that they can make informed decisions and choices about what to do and where to go.
- That a more flexible cross-health authority funding policy be developed.
- That funding be made available regardless of place of residence until a less-expensive and equally or more effective treatment is developed and available.
- That, if their health authority cannot or will not pay for Taxol and/or other preferred treatments, more flexibility be allowed to pay for themselves e.g. patients allowed to pay for part of their treatment instead of all or nothing at the moment.
- That more work be done to ensure that side-effects are managed effectively and therefore minimised.
I hope that this input will receive due attention and I, like many others, await the conclusions of your deliberations with considerable concern but hope for future sufferers.
Yours faithfully,
Ms Carol A. Morton
An update for patients with early recurrence
The TCA ovarian cancer trial
This trial was launched in 1998 to test a new way of working out which chemotherapy drugs to give individual patients with recurrent ovarian cancer. The trial has now recruited 55 patients from doctors in eight UK centres and two in Germany. The results cannot be analysed until the end of the study, which needs a total of 182 patients. We hope that more centres will join in and that the study can be completed in the next 18 months.
Chemotherapy for ovarian cancer can be very effective, but sadly some patients relapse quickly because their cancer does not respond to the drugs used. It has long been a goal of cancer specialists to be able to tailor therapy to individual patients, but this has proved difficult to achieve.
Our trial involves culturing patient's cancer cells for a short time with up to 12 different anti-cancer drugs to find out which ones kill the cells most effectively in the laboratory. Usually the cells are obtained from fluid in the abdomen (ascites); if this is not present a biopsy may be taken by keyhole surgery (laparoscopy) or during open surgery if justifiable.
This is a randomised trial to compare the outcome of treatment based on the test result against the best standard therapy chosen on an individual assessment by the specialist without knowing the test result. In half the patients, allocated at random, the lab result is available immediately. In the other half, the result is held in reserve and is made available to the treating doctor on request.
Due to constraints within the NHS and other trials, only some centres are able to take part in the study. These include Preston, Guildford, Airedale, Poole, Portsmouth, Mount Vernon and Wolverhampton. Dr Ian Cree at the Institute of Ophthalmology in London is doing the laboratory tests. Interested oncologists are welcome to contact either doctor; patients can get the best advice by going through their own specialist or GP.
Further information about the study is also available on The Lancet website at http://www.thelancet.com/.
Ian A Cree
Clinical Senior Lecturer, London
