Cancer 101- dispelling two popular misconceptions

A lot of people seem to think that this is how cancer treatment works:

  1. You get cancer
  2. You get treated for it
  3. If you’re alive at the end of treatment it means that it worked and you’re cured. You’ve defeated cancer! Here’s a gold star.
  4. If you get it again (it “recurs”), you’re back where you started and steps 1 to 3 are repeated.

This is totally inaccurate, but people are forgiven for believing this, because this is how it is with most other diseases. Cancer, unfortunately, is not like most other diseases.

What really happens is this: you receive the treatment that decades of research and clinical trials have determined is the best possible one. The definition of “best possible” varies depending on what kind of cancer you have and what stage it is at. If at the time of diagnosis your cancer is of the type and/or is so advanced as to be incurable, then “best possible” could mean the treatment that prolongs your life the most. At the time of diagnosis, my cancer was in the curable category, so “best possible” meant a regimen designed to get rid of it completely. (N.B. “Curable” does not, as you will see, mean that everyone who has it will be cured-it simply means that there are people who’ve had it who have successfully got rid of it, so a cure is in the realm of possibility.)

In the case of curable cancers, if at the end of your treatment there is no evidence of any remaining cancer cells in your body, you are declared to be in “remission”. This is where the first popular misconception creeps in. BEING IN REMISSION DOES NOT MEAN THAT YOU’VE “DEFEATED” CANCER AND YOU’RE CURED. Typically, you’ve to wait for 5 years after the end ­of treatment to determine if it’s really gone away. If your cancer does not resurface in those 5 years, there is a very high chance that you’ve been cured of it. If it doesn’t resurface in the next 5 years either, then you can be almost certain that it’s gone for good.

That was simple. Now to the obvious question: what happens if it does resurface within 5 years after the end of treatment? A recurrence typically reduces the chances of a cure-the extent of that reduction depends on how soon after treatment it occurs, and in the manner it occurs (is it in the same place as before? Is it only in one place, or several? And so on). My cancer, for instance, recurred within a few months of the end of treatment (not good), and in several places that it wasn’t there the first time around (also not good). This reduces the chances of a cure dramatically, making a cancer that looked very curable when it was first diagnosed look almost incurable now. This is where the second popular misconception creeps in. The prognosis the second time looks very different from what it was the first time. I’m not back to where I started; I’m on a different trajectory altogether.

To recap:

Popular misconception number one- When my treatment ended the first time, I was cured of cancer (I was not).

Popular misconception number two- Since I managed to get rid of it the first time (I did not), I can hopefully do it again (no, it isn’t the same as before, and I didn’t get rid of it the first time anyway).

xkcd says the same thing much better than I ever can here.

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22 Responses to Cancer 101- dispelling two popular misconceptions

  1. indernik says:

    Why do people look at the person who has cancer with eyes like he has just returned from another planet and he has traded his human life with another life. Then comes the big sentence, “everything will be alright”. I mean first of all where is the problem, 1. cancer 2. pain of the treatment or 3. the question whether the person will survive the cancer.

    1. Cancer – It is disease, just like any other disease (I pray it never happens to anyone). If it happens we have to deal with it, just like any other problem we face.
    2. Treatment – It is painful and every treatment is painful. Treatment of fractures, lungs and what not.
    3. The big question. Surviving cancer. There is risk in everything we do, risk is everywhere. Every moment carries the seed of risk and it doesn’t mean that we become a pessimistic and start criticizing everything we do.

    Every time I hear a cancer story my eyes do get filled, but that doesn’t mean i should create world of Narnia for them. The last thing I wanted to hear when I went to that treatment phase was that everything will be alright, it won’t come again, keep faith and all that stuff. And these things create more headaches then the chemotherapy 🙂 Am I right on this?? So I would say, do what you love to do. And it seems you are a writer (Or maybe I am just inferring). I’ll come back to read more. Tc.

  2. SC says:

    I also find the same old tired platitudes you mention annoying, and even insulting- but I try to remind myself that people really do mean well, it’s just that they don’t quite know what to say when confronted with a disease that has long been associated with terror and suffering in popular imagination, and that is poorly understood. I could very well have said something similar, had I been in their place, and I’m sure there have been times when I’ve said things are are downright insensitive to people during a difficult time in their lives, which in my mind were perfectly supportive and appropriate.

    So I guess we should just give people a break, and try and get the message across if we can, which is what I’ve tried to do now and then with this blog. Perhaps people with cancer won’t have to be exiled to Narnia then, as you say :-).

    Thanks for reading, and I’m relieved to hear that you were cured and are doing fine.

    P.S. I’m not a writer, but I love words and language and I like writing in my spare time.

    • indernik says:

      Agreed. What you are saying is absolutely right. I mean these people do care and mean what they say. It’s just that it’s difficult for them to understand what we go through. These days I am reading a book, “How to say No without feeling guilty”, and everything regarding this is explained there. Before I start writing about this I should stop right here as it will open the doors to another worthy discussion 😉

      Yup, we should write something like, “How to make cancer fun” or “How to accept cancer” 🙂 It would help many people.

      And by the way, How are you now?? You can keep posting on this blog. Believe me, people may not comment or click the like button but they do read them. Stay Strong 🙂

    • david Roberson says:

      It’s just too big for many people to deal with emotionally. They wish you didn’t have it, they wish they could make it better. (And it’s good that they wish those things!)

      They then state their wishes as facts (you can be cured!) because they don’t have the emotional capacity (at least not at that moment) to just *be* with someone who has a fatal disease. They just aren’t strong enough emotionally.

      It’s understandable and I have compassion for those who don’t have the emotional strength to just be there and deal with what is really there. It’s unfortunate, though, because the platitudes and falsehoods can be annoying, insulting, infuriating, and perhaps worst of all isolating to the one who is in fact sick, and cannot just ‘beat it.’

      Every language and culture has social conventions and acceptable ways of expressing certain things. (“I’m going to go powder my nose.”) In our death-phobic culture, I think the best one can do is when one hears “You can beat this,” to understand it as a social accepted way of saying “I wish with all my heart that your disease could be cured.” And perhaps (at least in some cases) also a way of saying “I love you too much to bear thinking or talking about losing you.”

  3. indernik says:

    So here I am. It’s 2:30 in the night here and I this feeling that i must write to you has returned. I’ll start with

    WHAT HAPPENED

    I was 12 years old when my parents saw a know growing on one side of the neck. i was taken to the doctors and they could not understand what exactly it was. i was treated for a disease that was assumed that it was there. But it was not sure. And they were getting no results. I was told I have 1% of surviving chance.

    After a month, I was diagnosed with kind of lung cancer (there are many types) and it was on final stage. Immediately a child specialist, who was treating patients having cancer was called. And within a day or two, my chemotherapy was started. I was given 16 chemo-therapies, one in every 15 days. It took 8 months for it to end.

    After that I was given 2 or maybe 3 chemo-therapies, each after the gap of around 6 months just to make sure that it doesn’t come back again.

    My body was cured.

    WHAT I DID

    As I was only 12 years old, it was somewhat easy for my body to take the pain. The younger we are the more flexible it is. I did experience normal problems that one faces after chemo-therapy, but there was no curiosity to find other people with same problems or asking questions as why me lord. I never read anything about cancer and I was never interested in it. The only thing I do remember doing was just taking part in the treatment as if I was only a spectator.

  4. indernik says:

    WHO HAS CANCER

    The first thing we assume is that we have cancer, and we connect it to our brains, which in turn affects our mind. Mental peace and will power is extremely required but due to our habits we create mental patterns that make it harder for us to see the truth.

    The truth is that our body has cancer and you are perfectly fine. Suppose you are driving a car and it runs out of gas. Now instead of getting out, you stay inside the car and assume that just because the car is not moving you cannot move too. So you don’t even try to get out of the car and ask for help or call the concerned guy. One has to realize the fact that, though the car is strong, you are stronger than car because you have mental strength. And in fact the car is also made by a human being.

    First of all try to see the difference between mental strength and the physical strength. Physical body has cancer. Don’t let it disturb your mental peace.

    THE BODY

    Our body is made of trillions of cells, and 70% of it is water. Every 16 days nearly 100% of the water is exchanged in our body.If we don’t clear our thoughts and cleanse our minds it affects the body.

    CANCER IN BODY

    It’s just growth of some cells and when our body is treated with chemotherapy, it changes everything. Our body becomes weak, and after few days we are allowed to take rest so it comes back to it’s normal healthy state. And after it we can start another round of chemotherapy.

  5. indernik says:

    PLANTING THE SEEDS

    Now our body has cancer and we have control on our mind. We won’t let cancer disturb our mind. Next is accepting cancer and releasing all the negative thoughts we have in our body and replacing them with love and joy.

    “Think and act cheerfully and you will feel cheerful”

    FURTHER READING

    You can heal your life – Louise L.Hay 1984
    How to stop worrying and Start living – Dale Carnegie 1953

  6. indernik says:

    It still remains, I’ll get back and complete it. And let go of all the fears in your heart if you are carrying any. Now cheer up. And don’t think too much. Tc.

  7. indernik says:

    So here I am. It’s Saturday night and I get some time to write to you. I envisioned before writing that I would write to you what I want to say in three parts. First part was written by me earlier and I was supposed to write another 2 parts. But since this week I won’t be at home and I won’t get much time. I have decided to write it in one part. I’ll keep it short and miss many points here.

    If I write all of these in a blog post, I’ll definitely tell you about that. And since I started it all here in this thread, I’ll compete it here too 🙂

  8. indernik says:

    ON PHYSICAL PAIN

    When I went through chemotherapy, I used to feel medicines going through my veins and it used to feel cold inside the nerves. They used to mix medicines inside the glucose as they can’;t be given without it. And I used to immediately get the sensation of vomit and heaviness.

    In simple words, someone explained that the process of chemotherapy kills bad cells inside our body and during that process it kills our good cells too. We feel weak and and it takes about 10 days for our body to regain strength. After another round of chemotherapy starts after it.

    We can’t run away from the pain as it is the result of the process, we have to accept it.

    ON PSYCHOLOGICAL BODY

    We’ll go away from cancer for a while. Just like we have physical body we have a psychological body too. Suppose you go to a party wearing the best dress you have, and you feel that everyone will appreciate it too. But the moment you reach the venue, someone looks at you and says what a crap. Then another person says the same stuff. After the end of the party you realize everyone hated that dress and you feel a little embarrassed and angry.

    In these situations our physical body was not hurt but we still feel the pain. It’s our psychological body that feels the pain. It’s our psychological body that gets hurt. And in turn it hurts our physical body.

    ON CALMNESS

    What all the teachers in army, medical school, saints and masters teach us is to control the psychological body. After all if it is in peace we will feel peace and if not we will feel angry and weak.

    If our psychological body and physical body is aligned we will feel peaceful and serene.

    ON FIGHTING CANCER

    If we are asked to break coconut we have to make a fist and hit it hard. Or hit the coconut on a hard surface so it breaks itself. Force is required.

    But if we have to break an egg, we don’t need much force. Even a child can break it.

    In dealing with different objects we need different amount of force. So in fighting cancer, we don’t have to make a fist as it is a inside battle. Inside our body and we have to keep our psychological body strong even if our physical body feels weak so we don’t lose the strength. Don’t let your mind think about the future and results.

    P.S. Cancer may be strong but your heart and soul is stronger than that. It won’t and it can’t take you down. Don’t you ever let it take away that smile on your face 🙂

  9. Mandy says:

    These posts by SC and Indernik have been enlightening to read. I have to say – I am guilty as charged. When I find out about someone being sick in general – instead of feeling sorry – I want to be able to share joy to bring a smile even when going gets tough. For that I hardly ever say I am sorry – instead I have things that go along with my philosophy in life ” Life throws lemons at you – make lemonade”. It is not that I don’t understand or empathize because I don’t have cancer, but somewhere emotions may be connected to feel the pain. Not exactly the same – but still. So forgive people like us who mean well, but may be hurtful in the process.
    MG

    • indernik says:

      Hi MG,
      It’s nice to hear from you. SC seems to be away for a while. While we give her time to heal, we can pray for her well being. She’ll definitely reply to you when she’ll come back. God bless her.

      And please don’t feel guilty, it’s OK to feel emotions, after all it’s the emotions which makes us human. We are not angry at the people who care for us no matter how they express, because deep down we know that their heart is pure and they genuinely care for us. It’s just that sometimes being with someone is more important than words. Sometimes you just have to look in the eyes of the person and let them know that you are there for them no matter what without saying any word. It means a lot.

      It’s nice of you to share the joy of life lived with people as It does bring happiness 🙂

      Joy and Grace.

  10. Mandy says:

    OOps “Sharing joy of life lived” was an important part of the sentence. So please read it with that. Couldnt edit.

  11. I just came across your blog today and actually learned a lot.
    Thanks for writing.

  12. Carolyn Iyer says:

    I think your blog is beautiful. Stumbled upon your link from a Clive James article. As someone bearing witness in this life, just wanted to share with you how meaningful your words are. I’m not going to muck up this space with hopes and wishes and get-well-soons, although I want all of that for you, especially because you are young and the thought of a young life denied is hard to bear, and with your talent to boot. So much to offer and live for.
    I’ll do this instead–send you thoughts of courage and strength.
    Keep writing.

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