Wednesday, December 10, 2008

Cancer Follow-Up, Survival

Since I was diagnosed with breast cancer, I've met many other breast cancer patients and survivors. There are as many different ways of dealing with cancer as there are personalities. Some women want to know everything about their cancer; some want to know nothing. Some are conscientious and participate in their treatment; some want to leave everything to the doctors.

I know every woman has the right to handle her disease and treatment in her own way, but I can't help feeling frustrated about cases where a patient compromises her chances of survival or even hastens her death by not taking an active interest in her own health.

I had a friend who was diagnosed with breast cancer in the U.K. nine years ago. She was treated there and a few years later, moved to Singapore. She didn't go for any check-ups once here. She told me her doctor in the U.K. didn't give her any follow-up schedule, so she assumed she was finished with cancer. Somebody finally convinced her to go for a check-up a few years ago. They found her cancer had come back and spread to other organs. She died last year.

I know other women who have similar stories. They don't follow up; they take bad advice from doctors; they don't seek second opinions or question their doctors. I'm pretty sure some of these women died or suffered unnecessarily as a result.

In the U.S., doctors and patients are far more conscientious about follow-ups after treatment than they are in Europe. A new research study that came out earlier this year showed that breast cancer patients in the U.S. had a five-year survival rate of 84%, compared to 70% for the U.K. Luckily, my doctor follows the U.S. protocol, but even if she didn't, I'd insist on it.

I wish other cancer patients would take more of an interest in their treatment. I wish they'd realize that no doctor will care about them as much as they'd like to think. I wish they'd realize that doctors make mistakes, that some doctors are more competent than others, that some doctors just don't care as much about their patients as others, that you cannot surrender your life to strangers whose motivation for treating you for a killer illness is that they get paid to do it. It's their job. Glorify it all you want, but to them, it's still a job and you're still just one of hundreds and hundreds of patients they see each year.

Cancer patients, please, think, think, think. This is your LIFE you're dealing with. After your treatment is finished, schedule your own follow-ups. Don't leave it to your doctor to tell you what to do. There's plenty of information on the Internet and in libraries and bookstores to guide you on how to go about taking care of yourself after your treatment's completed, so you have the best chance of fighting your cancer if it should ever come back.

Don't leave it until it's too late like my friend who died last year.

16 comments:

Falcon Scott said...

Dear Shin,

I totally agree with you on what you wrote about follow-up treatment but at times life is not as simple as that. Who would not want to be taken care of and be accorded medication and treatment?

Who would not want caring, altruistic doctors to take care of them?

I think most patients are discouraged from seeking follow ups due to the cost, not because they forgot about the treatment.

The cost of follow-up is substantial and sometimes I cry for them and even if they do get well, they would all be dead broke!

Unless the medical establishment lowers the cost of chemo and all related treatment, we have to simply accept, although it is heartbreaking, that needless deaths will be the norm as far as cancer is concerned.

I have seen it myself, dealing with patients. The cost is the biggest bugbear and hurdle in effective cancer treatment.

Falcon Scott ( MD )

Shin said...

Falcon Scott,

You make an extremely valid point. For patients who just don't have the money, it's a different story. I'm thinking of women I know who DO have the money and just don't want to face the possibility of cancer recurrence.

But catching a recurring cancer earlier with follow-ups will also be less expensive than treating the disease after it's progressed further.

On the other hand, if you do NOT follow up, find your cancer recurrence too late and die, you won't have to spend any money at all.

Falcon Scott said...

Dear Shin,

I truly agree with you Shin. I think that it's crucial to get some medical insurance policies that cover terminal illnesses and related treatments, and better still, includes those outpatient charges in too.

If one is covered there will be no excuse not to seek follow-up.

Falcon Scott ( MD )

Falcon Scott said...

Dear Shin,

One point to add - patients who do not have the money are STILL cancer victims and are no different from patients who can afford follow-up treatment.

These poor cancer victims TOO have the right to live and be accorded treatment regardless of their financial status.

I am not in the commercial circle anymore. I run a free clinic in the Maldives and as far as I am concerned, no one will be denied treatment as long as I am around even if they are poor.

I have been called to be a proper doctor and a proper doctor I will be.

Suzanne said...

Wow! What an astute observation, Shin. After coming up close and personal with doctors as a patient, I see that some of them are indeed just doing a day-job. So a patient is not so much a person with an illness, but a case number, or worse, “xxx procedure done on ddmmyy”.

“Do no harm” means not doing anything outside of the proven and generally accepted. And “to cure, sometimes; to relieve, often; to comfort, always” literally flew out the window in the mill that is “standardized with good intentions, mechanical in results” hospital workflows.

I wish doctors could be more patient when the patient seeks to understand more about her illness. I wish doctors could spare a patient a bit of time when she wishes to discuss alternative treatments or surgical methods she found out about overseas, even if it is not available immediately locally, instead of “this is what I offer, take it or leave it”. I wish doctors could understand why patients opt not to go with their prescribed treatments, especially when they cannot give a better cost/benefit analysis than "This is our recommendation", or “Don’t regret it if…”.

True, they are supposed to know more, but ultimately it's my health, my choice. I need to be convinced that going on a drug for five years to prevent recurrence is going to do more good than harm, not increase the chances of another type of cancer by X % in exchange for reducing recurrence by X % in addition to numerous other side effects. Not when every research study subject on the "proven" benefits of the drugs are much older women of different ethnicities.

I guess the moral of the story is this: make your choice and live/die by it. This, I guess, applies to your friend when she chose to rely entirely on cues from her doctors.

Suzanne

Leighbee said...

To Falcon Scott,

I would like to say a personal "THANK YOU". What a selfless manner it appears you conduct yourself in. I would be very interested to learn more about you and your cause.

Anonymous said...

I agree that we should be responsible for our own health. After my surgery for breast cancer, the oncologist recommended radiotherapy plus chemotherapy and five years of Tamoxifen after that.

I did not question the treatment, but just a couple of months into Tamoxifen, my liver acted up and I was put on another medication to take care of my liver. The oncologist then changed my Tamoxifen to Femara. I was not advised on the side-effects of Femara.

Into my 4th year of Femara, my oncologist sent me for a bone density scan and told me I had early osteopenia. I wasn't told about that when I was put on Femara. Then the oncologist wanted me start osteotherapy.

That's when I decided enough is enough and I did my own research on the Web and concluded that I did not want osteotherapy. Instead I asked to see a bone doctor. I have completed my five years in August this year and am still seeing the bone doctor. As for my liver... I am still on medication for that, but I hope only till early 2009.

I sometimes wonder if cancer patients die from other illnesses and not the cancer itself.

Shin said...

Anonymous,

I think the question you meant to ask at the end of your comment was whether cancer patients die from treatments or other conditions caused by cancer treatments, rather than the cancer itself.

There are many people, especially those touting alternative therapies, who would argue that's the case.

I found one article on a study released last month: "Hundreds of cancer patient deaths caused by chemotherapy".

Falcon Scott said...

Dear Leighbee,

For 25 years I laboured and worked my heart out practising commercial medicine and day by day I became less and less sensitive to the real pain in my midst, being so indifferent to the emotional needs of my patients, too caught up with costing, mundane administrations, profit and loss and such.

The day I quit I never felt so liberated, so free to do what I was called to do which is to lessen pain and suffering without so much as a mere thought to the bottom line.

I backpacked with some of my medical peers who threw in the towel together with me and decided to throw caution to the wind and tend to world's poorest nations.

The joy I felt when I delivered babies in an ibos tribe was indescribable; it was electrifying to say the least and it was from that point that I knew what I was called to do, which was to practise true and pure medicine.

I have a team with me with the same mindset. We lacked nothing but in the course of our work derived so much joy and meaning that money cannot buy.

We have extended families all around the world. We felt loved and trusted and accepted both by the rich and the poor.

My team is not what you call glamourous because our main objective is not to be rich in monetary terms.

For once in my life I felt complete and whole.

Falcon Scott ( MD )

Kathie said...

Dear Falcon,

Who wouldn't be the happiest person to be able to run a free clinic in a place like the Maldives?

Are you altruistic to have given up your commercial medical practice or do you gain as much joy and meaning from your calling? I don't suppose the Maldives needs a clinical psychologist?

Shin, perhaps you and Tony should visit the Maldives. It is described as a paradise on earth. With Falcon's medical care, you'd be fine.

Kathie

Shin said...

Kathie,

It was my dream to die in the Maldives, looking out at the sea from a waterfront villa, with nothing to look at but the ocean, sky and sun. And complete silence. I wanted to look out at the water, close my eyes and just top breathing.

But that would be selfish, not to mention logistically impossible.

Leighbee said...

Thank you Falcon Scott. You are one of life's angels and I am humbled.

Falcon Scott said...

Dear Kathie,

At times the truth is so far from the postcard pictures showing the idyllic scenes of beaches.

When I first set up my makeshift medical post there, all we had was a run-down dilapidated shack for our medical centre. We lacked running water and manpower; all we had was our hand-me-down first aid kits and plenty of kindness from the locals and tourists. Our ambulance was donated by a kind British gentleman.

In terms of monetary rewards, we have nothing and we don't really need it. : ) BUT in terms of good will and job satisfaction, we get plenty!

This whole idea was not for a religious or political agenda, but to know what we could do for another human being.

Many of my ex-colleagues think I am mad. If my madness can give me so much joy and satisfaction, I have nothing but a grateful smile for them. : )

Falcon Scott

Anonymous said...

Dear Shin
to Falcon Scott

I am much heartened to hear of the work of caring for the sick in the Maldives. Where do the financial resources for this work come from? What motivates your teammates and who are they? Are they surgeons or just general practitioners or specialists in a specific field? I can identify with the joy and satisfaction that comes from giving selflessly.

Falcon Scott said...

Responding to the query:

The team comprises 24 medical crew:

- 5 surgeons (multi-discipline) including myself
- 5 pediatricians
- 5 gynecologists (some are interns from medical schools)
- 5 medical staff (including paramedics and lab techs)
- 4 sniffer dogs for search and rescue operations

As for donations and funding, no worries as long as our conviction to spread love and good will is strong and genuine, the funding will follow. : )

Falcon Scott

Kathie said...

Dear Falcon,

Like the idea that you counted the dogs as part of your crew. : )

I am very sure all of you must be among the richest people on earth with currency in love and good will.

"This whole idea was not for a religious or political agenda, but to know what we could do for another human being." I embrace this mission, one free from religious and political motivation.

Shin, can you see what I see? Besides the idyllic scenes, the thing that made some part of the Maldives a paradise on earth is the presence of these kind souls.

Falcon, you are far from mad. May I know the name of your medical operation? How can one show practical support for your team?

Kathie

[From Shin: Falcon, can you post your e-mail address here so that Kathie and others who would like to get in touch with you can do so? Thanks.]