OVER the last few months, my wife and two dear friends, all in their forties, passed away due to cancer.

Five more friends have either had an episode of cancer or are still battling it. I know of many more, beyond my circle of friends and relatives, who are also suffering from one form of cancer or another.

Are cancer rates going up in Pakistan? Unless I have a pool of very high-risk relatives, friends and acquaintances, it does seem that cancer rates are rising and quite significantly.

Conversations with some oncologists suggest the same, though there are others who believe that rates have not changed. Since we are better able to detect and diagnose, we are recognising the problem more.

Even if this is the case, and the numbers have been significant all along, it should be a matter of concern. But cancer rates have gone up a lot in many countries. So, it would not be surprising if they have increased in Pakistan too.

But all this is based on anecdotal, experiential and/ or small-number data evidence. Pakistan does not have a national registry of cancer patients so we do not know the exact number of cancer patients in the country. To the best of my knowledge, we do not have relative baselines and numbers recorded over time either, so it is very hard to know precisely if the figures are changing.

Given the impression of significant increase in rates, it is worth investigating the issue and start collecting national level data.

All my friends, relatives and acquaintances who have had to negotiate the world of doctors, specialists and hospitals in Pakistan, due to cancer, have had horror stories to narrate.

There are no standard operating procedures and protocols for dealing with patients and medicine regimens; diagnostics seem not to be state-of-the-art even at the best, most well-known places; patients have to run from pillar to post to find experts; and no hospital seems to have a team in place to coordinate treatment decisions and options and present a consolidated plan of action to the patient. The diagnosis of cancer is stressful enough. Every person and family facing cancer issues that I know of has faced higher levels of stress due to problems in finding the right doctors, getting the diagnostics done and finding out about the right treatment options.

A colleague was treated for cancer for a couple of years by one of the leading hospitals that we have but after that period, his doctors told him that they had gotten the initial diagnosis wrong and had been treating him for the wrong cancer. The other cancer had, by then, become considerably advanced and was no longer treatable.

Another friend went to a second oncologist for confirmation of the initial diagnosis. He got a very different opinion from the second doctor. And the third doctor gave an opinion that was totally different from the first two.

The two leading hospitals of the country gave, on similar tests, totally different opinions on the kind of cancer that a colleague had. Since the treatment for each is also very different, it presented a rather difficult problem. Deciding on the kind of treatment is not something that can or should be accomplished by tossing a coin.

In at least two cases I know of, doctors either failed to look at alternative explanations of the symptoms and/or ignored what their own colleagues were saying. In both cases the patient passed away before the oversight, negligence and/or stubbornness could be rectified.

Cancer is a hard disease to manage, even with the best of facilities and the best of help. Cancer cells can spread to other parts in the body; a primary cancer can lead to secondary ones. Cancer cells can hide very well, and become drug resistant quickly. To deal with a cell that is so smart and agile, medical protocols have to be agile too. This is where there are major lacunae in systems in Pakistan.

There are few oncologists in the country and too few specialised cancer wings/hospitals. Different cancers require very specialised knowledge and most of our oncologists tend to be jack of all cancers. Diagnostic facilities are not up to the mark. I do not know of any patient who did not go to at least two or three laboratories/hospitals to get tests done and redone.

Can cancer hospitals in the country, or oncologists working in the country, get together to form collectivities that allow national registries to be established, diagnostics to be standardised, protocols to be set up for treating at least mainstream cancers and referral systems to be developed so that patients can find the relevant experts quickly?

Can cancer hospitals and oncologists get connected with hospitals and doctors abroad so they are able to access research and the latest clinical practices that are being developed outside the country?

Cancer research is a fast-moving field where new drugs and new protocols get developed all the time. Since most cancers tend to grow quickly, it is important to develop ways of getting the advanced knowledge to Pakistan as quickly as possible.

If all of this is too much to ask for from administrations at cancer hospitals and oncologists, as they might not have the time and/or the incentive to work on sharing and protocol development initiatives, maybe the government should step in and form committees or commissions that can facilitate the development of these elements of public welfare.

It is probably too much to ask at this stage for cancer patients and families to start organising themselves for public action.

The writer is senior adviser, Pakistan, at Open Society Foundations, associate professor of economics, LUMS, and a visiting fellow at IDEAS, Lahore.