Cancer care: disturbing facts

Updated Jul 14, 2013 09:52am

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.


Do you have information you wish to share with Dawn.com? You can email our News Desk to share news tips, reports and general feedback. You can also email the Blog Desk if you have an opinion or narrative to share, or reach out to the Special Projects Desk to send us your Photos, or Videos.

More From This Section

Balochistan has a road map

However sound a proposed development strategy for Balochistan may seem, the pitfalls cannot be ignored.

Rage and grief

The fragile unity shown at the conference will need to be held on to through a series of gruelling tests.

Comments (10) Closed




S
Jul 14, 2013 12:26pm

I can imagine. I lost my mother to a cancer that could have been easily detected by a GDP but was treated as a fungal infection instead. I am working as a cancer researcher and i am disappointed at the behavior of a very famous cancer hospital in lahore. My mother was mismanaged for her side effects of radiationtherapy, the doctors prescribed her a medicine to suppress her cough when she had infections spreading to her lower respiratory system. She didnt die of the the cancer, but the pneumonia in the end. Even now after 10 years i hear stories of people how they are being wrongly diagnosed and poorly managed at the same place! I have worked with oncologists in USA who spent maximum time planning and coordinating with their colleagues. In pakistan, a plastic surgeon resects a tumor, or a surgeon repairs the defects with a graft, compromsing the resuls for the patient, but will not ask someone to help!

Dr Haseeb Khan
Jul 14, 2013 01:26pm

The assumption that oncologists in Pakistan are living in isolation and don't know what is happening in rest of the world, is totally wrong. Most of the oncologists in Pakistan have been trained abroad and keep participating in research and educational activities here as well as abroad. Thanks to the advances in internet, access to local and international research journals and conferences is not that difficult either.

p
Jul 14, 2013 02:29pm

"To deal with a cell that is so smart and agile, medical protocols have to be agile too." I thought this was a pretty profound insight. Medical protocols and medical professionals themselves need to learn agility, and be willing to unlearn their orthodoxies. Does Pakistan have a Pakistan Cancer Association? There is one in India, and when I knew it, it served as a vital helpline linking families with others who shared their pain and understand their experiences and suffering. In this day and age, it would be easier to just set up an online group.

gangadin
Jul 14, 2013 03:18pm

@S: Forget about your mother. She is dead. If you wanna do something to improve things in Pakistan, then come up with some constructive suggestions. And by the way, why didn't you take your mother to US to consult with all those cancer specialists that you are so impressed by?

gangadin
Jul 14, 2013 03:21pm

When people come here and start lamenting about their dead relatives and start bashing Pakistani system, they never seem to mention horror stories about foreign institutions e.g. Sloan-Kettering has many horror stories.

Khurum Khan
Jul 15, 2013 12:31am

I'm sorry to hear about your loss. Unfortunately the research area is non-existent in our part of the world and there is a lack of infra-structure to support cancer care in Pakistan. I'd the opportunity to deliver some lectures in both top hospitals of Pakistan and actually the efforts made by some of the doctors in both hospitals are exemplary. One has to remember that cancer care is not just oncologists skill dependent area but requires a big Multi-disciplinary team effort which requires deeper and bigger infra-structure.

drsnmd
Jul 15, 2013 12:42am

It is a systemwide problem. Several factors related to MDs, Patients, organizations and our society all contribute to this systems issue. To find solution to this we will need to focus on the system of care delivery at a macro level. Tinkering on the edges can only provide marginal benefit. Cancer treatment is complicated and costly. In Pakistan there are few places that are better than the others obviously. Diagnosis, treatment & staging related tests are all costly; chemo-radiation (I am NOT talking about Proton Beam Therapy which costs 200 Million dollars to install and is indicated for few cancer treatments and is not even available everywhere in US) when and where available is very costly etc. However once a diagnosis is established standard treatment guidelines are available to physicians. Counterfeit drugs in the market is another issue.

I am presently working in an institution where our patients come from all over the world and across the USA. I am not sure that my oncology friends here will be able to provide same level of care to the patients in Pakistan due to lack of or ineffective utilization of existing resources. Even here sometimes there is disagreement about few aspects of care. However difference is that it gets resolved/addressed somewhat more promptly due to accountability. Ultimately we physicians are responsible for our patients care and outcomes. Active participation of the patients and their families is crucial.

salma
Jul 15, 2013 12:49am

Thank you for writing this, it's so true. I am so sorry to hear about your young wife Faisal Bari. I wish we the families of cancer victims could get together and do something.

arif
Jul 15, 2013 02:43am

I am medical oncologist and have worked in pakistan and currently working in usa . it is true that some tumors/Cancers are hard to diagnose.However 98 percent cancers are diagnosed easily. Problem in pakistan is that most people who call themselves oncologist are not fully qualified. Other issue is that people dont trust doctors in general. We need govt /PMDC /Heath minister to establish Cancer registery .Have accountability by medical professionals . Awareness is big issue.At the end lot of hospitals and doctors are greedy . Things have improved a lot though since i was medical student .

Ws
Jul 15, 2013 12:15pm

@gangadin: I can only assume you are one of the negligent oncologists at the "famous Lahore hospital" or that you have some sort of behavioral disorder. There is no other explanation for these offensive comments.

I hope the Dawn mods will let this through since they allowed "forget about your dead mother", and complaints about "people coming here and lamenting about their dead relatives".