Hedging My Bets

I saw the surgeon today.  My son took me and sat in on the consultation.

The surgeon was a likeable chap and he was very confident, upbeat, positive, and reassuring.  My son was impressed and is absolutely certain all will be well with me now.  He believed every word the surgeon said.  He has no reason not to since he has not had my experience with the medical profession and life.

The surgeon said he does not believe I have cancer but the only way to be certain is to operate and check the capsule surrounding the nodule.  He said cancer grows out into surrounding tissues but you can only see that if you take out the nodule and surrounding tissue and examine them.

He asked about my symptoms but I forgot to take the list and could only remember a few of them.  He said some of the ones I remembered were unlikely to be related to my thyroid and seemed more concerned that I quit smoking before the surgery.

He started off, as my internet research predicted he would, by saying I would need the whole thyroid gland removed.  When I told him I didn’t want him to do that he said exactly what the internet information said he would – that it would be safer to remove it all.

He wanted to know why I would want to take the risk of having to come back to get the other side out later.  When I mentioned the “living without a thyroid” forum and how some people there said life without their thyroid gland is so awful they wished they had taken their chances with cancer he was not impressed.  He said such statements were “almost criminal” and advised me most such sites were rubbish and were written by “malcontents” but he did agree to leave the other side of my thyroid alone.

He pointed out that all the people who went back to their lives after surgery and were quite happy don’t tend to go to such forums.  He also said I would probably need thyroid replacement medication even if he does leave some of the thyroid in.

I asked about the advisability of checking to see if there has already been any spread.  I said if it is cancer it may have already spread to other parts of my body and I asked him if there was any way to find out.  He was very reassuring.

He said the first place cancer spreads is into the lymph glands and there was no evidence at all that my lymph glands are involved so, even if it is cancer, it is unlikely that it has spread yet.  He didn’t offer to do any tests to check and I was too intimidated by his assurances to ask him to.

I asked about the risks to my voice, my calcium glands, and the risk of needing a permanent tracheotomy and he downplayed all of them.

My voice was more likely to be damaged by smoking, he said, you only need one of the four calcium glands and I will only lose two if he only takes half the thyroid gland out.  He said there is no risk at all of me needing a tracheotomy.

I mentioned the forum users claims that treatment providers are more interested in “normal” levels of thyroid replacement medication than patient symptoms and all their claims about feeling ill despite having supposedly normal medication levels and he just brushed them aside.

Thyroid replacement medication is robust, he said, it stays in the system for quite a while so you can even forget to take it altogether for a day or two with no ill effects.

He advised against believing all the rubbish and misinformation you can find on the internet and wrote down the address for his website where, he said, I could find the truth.

He put a form in front of me and asked me to sign it so he could book me in for the surgery.  I felt intense pressure to sign without reading it but I resisted and skimmed the document to get a general idea what it was about.

It was a consent to surgery form and one paragraph in particular frightened me.  I asked him about it.  He said it just allows him to deal with anything unexpected that might happen during surgery, such as excessive bleeding, which might require additional surgery.

It was a clause that basically gives him the legal right to do anything he thinks he needs to do to me during the operation.  It gives him the legal right to remove my entire thyroid gland and everything connected to it if he thinks it is the only way to ensure no cancer is left.  It means he can tell me to my face that he will not remove the whole gland then do as he pleases once I am on his operating table.

I came home feeling uneasy and got on the computer.  I typed in the address of his website and had a good look around.  That is when I discovered he lied to me!

The type of cancer I am suspected of having spreads through the blood and not the lymph nodes, he says on his website, so why did he tell me it is unlikely to have spread, if it is follicular cancer, because my lymph nodes appear unaffected?

Why did he say there is only a 10 to 20 percent chance that what I have is cancer and fail to mention those odds go up if you are over 50, if you smoke, or if the tumour is over 3cm in size?  Mine is almost double that size!

He gives graphic information about the risk of damaging the nerves that control the vocal chords on his website and says in a very small percentage of cases they can be so damaged the patient will need a tracheotomy to maintain their ability to breathe.

There is a picture of a state of the art instrument he uses to reduce the risks to the vocal chord nerves and, therefore, the risk of such a thing happening to any patient of his.

Unfortunately for me he only says he uses this instrument at the hospital where he operates on patients who are paying for his services.  There is no mention of him using it at the public hospital he will be treating me in.

If the risk is so small why does he need to use this machine at all and why did he tell me there was no risk of me ending up with a tracheotomy when, in fact, there is a risk however small it may be?

The only thing he said that eased my doubts and fears at all was that he performs about 150 of these operations every year.

This evidence of his experience in the field is not as reassuring as it might have been, however, because a statement on hospital paperwork warns you the hospital is a teaching hospital.  It says you must accept that students may be present whilst you are being treated and advises you that the person who treats you might not be the same person you originally saw.

That means the hospital has the legal right to have a rank amateur who has never performed the surgery before operate on me although I would assume that could only happen if the student was working under supervision from an experienced surgeon.

The internet states there is a high risk of damage to essential structures in the throat if the operation is performed by someone who is not highly skilled.  The risk goes up in direct proportion to the inexperience of the person operating.

I got that information from a paper that was written by a thyroid specialist for his peers in the profession!

Everywhere I look it’s all about percentages and that was the focus the surgeon had too.  The chances of everything being just fine are high.  The chances of me ending up with a tracheotomy and a lifetime of financial hardship because I can’t work without my voice and spending the rest of my life in acute physical misery because my body can’t adapt to thyroid and calcium gland replacement medications are small.

I should be optimistic.  The odds are in my favour – right?

One in three girls can expect to be sexually assaulted by the time they reach the age of 18 but what are the odds of having an uncle put his penis in your mouth when you are just two years old?

How many 16 year olds get gang raped?  How many women can expect that three out of the three men she falls pregnant to will reject their own children and disappear?

What are the chances of your marriage ending in divorce these days and how many people can expect to have five people gang up on them in a home invasion and steal their car?

What percentage of the population gets a nodule in their thyroid in the first place and of those people what percentage test suspicious for cancer?  I already know only 25 percent of thyroid cancers turn out to be follicular cancer but I am one of the ones who might have that.

I am the one in a minority who has been unlucky enough to have experienced all of those things.  I have no reason to believe I will not be one of the unlucky few this time too but there are a few very good reasons to believe I could end up in the hands of someone inexperienced or someone arrogant enough to ignore my wishes and subject me to procedures that reduce my chances of coming through this OK.

Don’t get me wrong – I trust God – I know He will do His best to ensure all goes well for me but I also know He is limited by human free will.

He cannot force the hospital to allocate me an experienced surgeon and he cannot force an arrogant surgeon to understand some people would prefer a short, but good life to a long, but miserable one.

The surgeon said the hospital would be unlikely to be able to schedule my surgery before January or February at the earliest so I have time to decide what I want to do.  I am thinking I will put them off and ask them to reschedule when they send me a time.

In the past I have always said I would not let them operate if I got cancer but I always assumed I would actually KNOW if it was cancer before I made that decision!

This is much harder.  Part of me wants to have the surgery just so I will know for sure if it is cancer or not because I hate not knowing!

I want to have the surgery because there is a chance some of the things that make me feel like crap might be fixed if I do but I am so afraid surgery will leave me feeling worse.

I’m leaning towards just putting the hospital off until my condition is so bad the surgery can’t make it any worse.  When the lump has grown so large I can’t breathe or work then I will have nothing to lose from surgery.

There is always the possibility that it is nothing serious and it will cure itself or God will cure it for me and I think I’d rather wait for a while and see if that happens.

I trust God but I don’t trust either the hospital or the surgeon I met today so, for now, I think I will put myself in God’s hands not the surgeon’s.