You get a photo for Facebook, and for your refrigerator
Almost all our our patients get a photograph of their parathyroid tumor (or tumors). We typically give this photo to your family member in the waiting room right after we are finished with your operation. Since your family has the photo, you (the patient) will see it first when your family comes into the recovery room to visit with you after you have woken up and are feeling good. If you are by yourself, we will give it to you when you wake up.
We will discuss your photo with you
Keep your photo out and on the little table next to your bed because the surgeons will talk about it when they come to say goodbye to you before you leave. Don’t put the picture in your purse, ’cause you will just have to pull it out again.
A benign, hormone-producing tumor
Hyperparathyroidism is caused by one (or sometimes, more than one) of your parathyroid glands developing into a tumor. Parathyroid tumors are not cancerous– thus we do not biopsy them to see if they are cancerous. These tumors cause disease because they produce too much parathyroid hormone (PTH). This hormone circulates in your blood, attacking your bones and making you feel bad. Remove the tumor, and the process stops.
Yes, you can “live with” fewer than 4 parathyroid glands (actually, 1/2 of one is all you really need). When we remove the parathyroid tumor the “normal” gland that it grew from will be removed with it. Most of you will leave here with 3 normal glands and a photo of one bad gland (the benign parathyroid adenoma).
We photograph the parathyroid tumors (adenomas) that we remove. You will get a copy of this picture, and all of your doctors will get a copy mailed to them. Seeing the photo helps reinforce the fact that hyperparathyroidism is caused by the formation of a tumor, and its removal will cure the disease.
The majority of people with primary hyperparathyroidism have one parathyroid tumor and three normal glands. Around 20-30% of people will have two tumors (increasing incidence with age). If this is you, you will see two of them on your photo. Very few folks (less than 3%) will have 3 or 4 bad glands. And no, we never take out all four; we take out 3.X of the worst ones. But please don’t worry about this, very few people have 4 bad glands. This is why you came to see us, because we know what to do.
Photo is actual size
The photo shows the tumor “actual size.” There is no “scale” in the picture … this is the actual life size of the parathyroid tumor(s) we remove. Put a piece of rice on your photo if you want to see how big the tumor is compared to a normal gland.
What does the number mean?
We are the only surgeons in the world who measure the PTH hormone that is being produced by the tumor as it is happening. During the operation we measure the amount of hormone produced by each parathyroid gland (this takes about 3 seconds). Normal parathyroid glands are small (about the size of a grain of rice), yellow, and soft; but we also know they are normal because we measure them and show that their production of parathyroid hormone (PTH) is near zero.
Parathyroid tumors (adenomas), on the other hand, are typically much bigger, red/purple in color, and much more firm. Adenomas also produce lots of hormone which, of course, is what is driving the disease. Unfortunately, some parathyroid glands are a little bigger than “normal” so there is no way to tell if they are good or bad by just looking at them. This is where the probe is really helpful because it can tell if the gland is asleep (normal) or not.
Your photo will have a blue sticker on it showing the amount of hormone being produced by the tumor. This is usually somewhere between 300 and 1000. In older tumors, this number can be well over 1500 units of hormone. Thus, the number on the blue sticker is the amount of hormone actually being produced by the tumor in the photo (as you recall, we measured it as it happened).
When your doctor measured the hormone (PTH) in your blood (in your arm vein), it was hormone produced by this tumor which then became diluted in all of your blood as it circulated. Now that this tumor is gone, the PTH in your veins will only be coming from the small normal glands, and therefore the PTH in your blood will be much less when you leave here today (Remember: these normal glands are sleeping/dormant-thus, making very little hormone).
Your PTH will begin to fall within minutes of tumor removal, and we will measure this from your arm prior to you leaving. All of these hormone measures will be conveyed to you and your doctors. Your calcium will also start to fall within a few hours. You should start taking calcium pills within an hour of the operation or the calcium will drop too low and make you feel bad. Within the first few days, the normal glands that remain in your neck will start working properly (they wake up), and you won’t need to take as much calcium. That is why we start you on a lot and decrease the amount over two weeks. After that you are taking the amount of calcium you need to help your bones re-build and heal.
Show the photo to your doctors
Although we send a copy of your photo to your doctors, a lot of them never see it because their office staff file it in the chart (or somewhere else?). A lot of time the doctors have electronic medical records (a terrible thing) and so the paper photograph never gets entered into the electronic chart. So take your photo with you to your doctor so you can discuss it.
Even small tumors the size of a pencil eraser can ruin people’s lives and make them miserable. The photos are a teaching tool to remind everybody that hyperparathyroidism is a disease caused by a tumor. It isn’t “just a high calcium level on your blood test”. It is a progressively destructive disease that needs to be addressed. High calcium is caused by a hormone-producing tumor. Help us teach!
Look for the normal gland part of your tumor
Parathyroid tumors grow out of normal glands. In most cases, during the operation we can see the normal gland and the tumor growing out of it. In most cases, we can still see this in the photo, so look for it as a yellow piece on the edge that is about the size of a grain of rice. As discussed elsewhere in this app, the standard way to do this operation is to remove the entire parathyroid gland–the normal part comes with the tumor. The only exception to this rule is in people who have had a failed operation somewhere else and they come to us having already had several normal glands removed. In these unfortunate folks, we try to dissect the parathyroid tumor away from the normal gland in an attempt to save the normal gland. We do not do this for people having their first parathyroid operation.
Did you know that we operate every day on people who have had one (or more!) failed operations somewhere else. Most of them have had multiple normal glands removed and the tumor was never found. Nearly 15% of our patients have had failed surgery somewhere else. UGH!