Johnny is a 65-yer-old Indonesian. He had been smoking for about 30 years but since the past 15 years had stopped this destructive habit.
Johnny’s problems started in mid-20015 when he had coughs with blood. He went to a doctor in Jakarta and an X-ray was done. The doctor said Johnny had TB (tuberculosis) and was given TB medication for 2 months. His condition worsen. He could not sleep at night.
Not satisfied Johnny came to a private hospital in Penang. An X-ray was done and the lung specialist concluded that Johnny also had TB. But Johnny told the doctor that he had been on TB medication for 2 months and this was not effective. This made the doctor request for a CT scan. The CT scan results showed a tumour in his lung.
The lung specialist suggested that Johnny undergo surgery. Johnny lost faith in the doctor and told him that he would need time to consider his suggestion. Johnny flew off to Singapore for a second opinion.
In Singapore, Johnny did a PET scan.
- PET scan showed an intensely FDG-avid 50 mm cavitated lung mass in the left upper lobe with several small nodules. This lung mass is suggestive of a lung primary while the small nodules are suggestive of metastatic disease.
- The FDG-avid left hilar nodes and bilateral mediastinal nodes are likely metastatic nodes.
A CT guided left upper lobe lung biopsy was performed and confirmed a moderately differentiated squamous cell carcinoma.
Johnny was asked to undergo chemotherapy but he hesitated and decided to seek our help instead.
Listen to our conversation that day.
In Penang Hospital
Patient: After the CT scan he (lung specialist) asked me to undergo surgery.
Wife: Yes, within this 2 weeks.
C: Did you go for the operation?
P: I did not want the operation.
C: Why did you not want to operate?
P: I am doubtful. We then flew to Singapore.
In Singapore Hospital
C: What did the Singapore doctor do?
P He asked me to do a PET scan.
C: You did the PET scan?
W: We also requested him to do a blood test.
C: What did the doctor say after the PET scan?
P: There is tumour in my my lung and has “germ” but he was not sure what germ that was.
W: Not sure what kind of tumour. The doctor said it we want to be sure, we must do a biopsy.
C: Did you do the biopsy?
W: Yes this is the result: MODERATELY DIFFERENTIATED SQUAMOUS CELL CARCINOMA.
C: What did he want you to do after this?
W: He asked to go for chemo.
P: I did not want to do the chemo, so we flew to see youright away.
C: Did you ask how many chemos he wanted to give you?
W: Six times.
Can Chemo Cure You?
C: Did you ask if the chemo is going to cure you?
W: I asked. The doctor said, THREE persons did the chemo, TWO had “hasil” (results) but ONE person did not have result.
C: What do you mean by two people have “hasil”?
W: When three persons had undergone chemo, TWO persons will be cured. A majority were cured.
C: Can cure?
W: Yes, that’s what the doctor said. For most people.
C: Is this what you understand by two people had “results”. You understand it as being cured?
W: Yes, That is what the doctor said.
C: Really, can cure?
C: Two had chemo and got cured, only one did not cure? And you don’t want that?
W: We don’t want.
C> Hey, this is better than gambling. Even gambling does not give you that chance! Please go and do the chemo because two out of three are cured — you better go for chemo. If this is true it is very good chance indeed.
Do You Believe This Statistics?
W: That is it. I did not believe (what they doctor said). That is why we come and see you.
C: Very smart indeed – that you don’t believe. That is why I ask patients to ask their doctors. One, can the chemo cure or not? Second, how much does it cost?
W: The doctor said the first shot of chemo cost SGD 12,500.
C: And you need to do 6 cycles?
C: You need to pay quite a lot of money. Do you have to sell your house for this?
P: No, no, we never ask him what the rest of the treatment would cost. I told the doctor, I want to go home and to think about it first. My body cannot take the treatment!
Johnny, his wife and daughter came to CA Care. I must admit, when I first saw them, they appeared clueless (never judge the book by its cover!) but as I heard his story, I must admit this is what all patients should be — empowered and know what you want from your doctor! Don’t be led by the nose believing that you will find a miracle cure.
There are many lessons we can learn from this story.
- Many patients are often misdiagnosed — TB for cancer. And they were made to take TB medication for months before their doctors realized that it was a wrong diagnosis. So patients take note of this. If you are not satisfied with your diagnosis, go find another doctor to figure out what is wrong with you.
- After taking TB medication for 2 months, Johnny’s condition deteriorated. Do you want to continue taking the medication? Or is it time for you to find out what is actually wrong with you? Johnny took a wise move, he came to Penang to seek a second opinion. In fact, when you come to CA Care, we also tell you clearly and bluntly. If you follow our therapy for two weeks or a month and don’t get better, please go and find someone else for help.
- In Penang, Johnny was again told that he had TB — again a misdiagnosis. Johnny did not keep quiet. He told the doctor about the earlier misdiagnosis. It was wonderful that this doctor listened to Johnny (some doctors don’t listen to their patients!). The CT scan picked up a tumour in Johnny’s lung. Just imagine if Johnny took it as it is — go home with more TB medication from Penang, even though the TB medication in Jakarta was useless. So the lesson here is: Patients, speak up if you think the doctor is not doing it right!
- The lung specialist in Penang suggested surgery — to be done within 2 weeks. Unless it is an emergency, be careful about being pushed to do things immediately. Patients need to be give space and time to think things over or given a chance to seek a second or third opinion. Why the rush? Johnny was right again on this score. In his mind, the same doctor had misdiagnosed him and now this same doctor is rushing to “cut” him up. Johnny was doubtful and ran off to Singapore.
- In Singapore Johnny’s problem was more defined — PET scan and biopsy confirmed lung cancer. This time the doctor did not want to “cut” him up, he wanted to chemo him! Do you learn anything from this? If you go to the barber, know that he will snip your hair. If you go to the surgeon, no matter what, you will end up on the operating table. If you go to a radiologist know that his answer is radiation — they say “burn” you. And in the case of Johnny, he went to an oncologist who main job is to chemo you — or “poison” you. And if you come to us, we cannot do all these. So we ask you drink some herbs and take care of your diet. So what treatment you get depends to who to go to. Who is right, you want to ask. No one has the monopoly of being right. So pick your choice.
- The oncologist in Singapore suggested 6 cycles of chemo — the first cycle cost SGD 12,500. The remaining expenses, Johnny was not interested to know! Why? Because he did want to undergo chemo. We always remind patients to ask about the cost of the treatment so that you are aware of what you are going into. Don’t die a bankrupt! Many patients did tell us that they have to sell their house or land to pay for the medical bills. One lung cancer patient spent SGD 1 Million for his 2-year treatment. And he died.
- The most important question that patient should ask the doctor is, Will the treatment cure me? Some patients do not dare ask the doctor this, but some do. We wonder — why are you afraid to ask this question? If the doctor is not prepared to answer this question, then do you still want him to put the “poison” into you? Go find someone else who can do the same job but who is more caring. Also when you ask the doctor this question, look into his / her eyes and see how he /she react. See if he/she is being truthful in answering this question. One lesson to learn. Some doctors give honest answers but some give less than honest and biased answers.
Johnny was told that with chemo his lung cancer has a great chance of being cured. Out of THREE patients who have undergone chemo, TWO showed results. Obtaining results is understood by Johnny and his wife as being cured. We do not know how true it is but we again emphasize to Johnny that indeed if 2 out of 3 can be cured by 6 cycles of chemo, then he must go for it. That would be a great achievement. Our concern is that Johnny and his wife misunderstand the doctor — result does not necessarily mean cure! Results can mean anything — dead, half dead , sufferings or half cured.
Below are some examples of what some oncologists told their patients about the “success” of their chemotherapy.
- We asked Johnny. Why didn’t you want to go for chemo? His wife replied, I did not believe (what they doctor said). As said earlier, here was a couple in front of us — they appeared “uneducated and naive.” What make them so empowered to dispute the doctor? We have no answer to that question.
Over the years, we did come across very educated patients but they appeared to being led by the nose — believing everything that is being fed to them. Yet, there are some others who appeared “naive” but they have a mind of their own and they know what the “truth” is!
Let us end this case story by asking you to ponder the documented facts about chemo treatment of lung cancer as we know today.