So, Carl's energy has gone up. His weight is down. So far, he's gone from 243 to 228.
Somehow the fairness factor isn't in effect here. He's losing weight... I get part of my body taken out and I gain a pound.
You know what? Who cares? I'm just so grateful that Carl is doing SO incredibly well.
Thursday, June 5, 2008
Thursday, May 15, 2008
Someone from the DailyStrength.com website emailed me this about her tumor. So, now I don't know what any of this means and it's all new. but, I'm going to look it up:
"Please understand, ANY Pituitary Tumor, regardless if it is associated with Prolactin can venture outside the normal confines of the Sella Tursica... (styled like a Turkish Saddle), the Pituitary suspends in the Sella from the base of the brain, between the Optic Nerves, where they innersect.
As in my first Tumor, it was not confined to the Sella, it had pushed the Pituitary outside the Sella and grew into the Caverous, Sphenoid and Transverse Sinuses. Not all of the cells from the Tumor were extracted at the time of my initial surgery.
It would ADVISABLE to seek additional testing from a Neuro Opthamologist.. this of course could be discussed with your Endocrinologist."
"Please understand, ANY Pituitary Tumor, regardless if it is associated with Prolactin can venture outside the normal confines of the Sella Tursica... (styled like a Turkish Saddle), the Pituitary suspends in the Sella from the base of the brain, between the Optic Nerves, where they innersect.
As in my first Tumor, it was not confined to the Sella, it had pushed the Pituitary outside the Sella and grew into the Caverous, Sphenoid and Transverse Sinuses. Not all of the cells from the Tumor were extracted at the time of my initial surgery.
It would ADVISABLE to seek additional testing from a Neuro Opthamologist.. this of course could be discussed with your Endocrinologist."
Thursday, May 8, 2008
Today's VA Appointment with the Endocrinologist
The doctor he saw at the VA center this morning said they probably should have started him on the other medicine and not Cabergoline. His headaches shouldn't be related to his pituitary pressure, it might be bad eyesight. He's sticking with the Cabergoline and if it's effective, he will have to take it twice a week for the rest of his life. With his condition, the doctor said they probably should have started with the other meds and if that was ineffective, gone to the Cabergoline. But, now that they started him on the Cabergoline, he can't go back to the other medicine. For some reason it won't work.
He has to go in tomorrow to have blood work done. She doesn't even want to do another MRI for 6 months to 1 year. The tumor could also be splitting (that's new). The type of medication he will have to take depends on where the tumor is, whether it's on his pituitary gland or on the stem where it produces the prolactin. if it's pressing on a stem, they could be treating it incorrectly. They also could have other problems they haven't even recognized yet.
Not that either physician is wrong...right now, they're just different opinions.
He has to go back tomorrow morning to get some blood work. Today, he has to go to St. Vincent and the Endocrinologist to get all his tests, paperwork, etc., to give them back to the Endocrinologist tomorrow.
He has to go in tomorrow to have blood work done. She doesn't even want to do another MRI for 6 months to 1 year. The tumor could also be splitting (that's new). The type of medication he will have to take depends on where the tumor is, whether it's on his pituitary gland or on the stem where it produces the prolactin. if it's pressing on a stem, they could be treating it incorrectly. They also could have other problems they haven't even recognized yet.
Not that either physician is wrong...right now, they're just different opinions.
He has to go back tomorrow morning to get some blood work. Today, he has to go to St. Vincent and the Endocrinologist to get all his tests, paperwork, etc., to give them back to the Endocrinologist tomorrow.
Tuesday, April 29, 2008
VA Appointment
Carl and I went to the VA hospital last Saturday. They don't have his medication (bummer). But, they at least will be able to treat him. I have to figure out how to work the insurance. Do we drop his work insurance and have me pick up insurance through my job? Carl would have to pay full price for his medication unless there's something we can do through the VA.
Do we drop his insurance?
If we do, will we have to pay full price for his Cabergoline?
I can pick up Aetna through my employment.
Should we get supplemental insurance?
Do we go through USAA?
At least he'll be treated through the VA. But, then we really don't need to pay what we're paying monthly for his insurance through work, so that should bring us some relief.
I hate trying to figure this stuff out.
Do we drop his insurance?
If we do, will we have to pay full price for his Cabergoline?
I can pick up Aetna through my employment.
Should we get supplemental insurance?
Do we go through USAA?
At least he'll be treated through the VA. But, then we really don't need to pay what we're paying monthly for his insurance through work, so that should bring us some relief.
I hate trying to figure this stuff out.
Monday, April 21, 2008
This Saturday
Carl has an appointment with the VA hospital this coming Saturday to discuss medication, treatment, etc. This is good since Carl's finding difficult controlling some of his symptoms. We are hoping this appointment will bring a few things...financial relief for his medication and a place to continue working on shrinking this tumor.
Thursday, April 10, 2008
Carl's Visit to the Endocrinologist
Carl and I went to his appointment this morning with Dr. Asamoah. Awesome doctor. Good news. Here is what the doctor said:
Cause
Dr. Asamoah said they have no explanation as to why anyone’s Prolactin levels increase. Basically what happens is the hormones split, causing each hormone to think it needs to increase to a sufficient level. The brain, for some reason, does not attempt to stop this when it happens. 99.999999% of the time, this is a benign tumor. They know this through years of study. The only case the Endocrinologist has ever proved malignant is in a woman who had breast cancer and the cancer metastasized to her brain.
Diagnosis
Dr. Asamoah believes Carl’s tumor is small enough that it will be treatable by medicine. Carl will have some more lab work done in about four weeks. Two weeks after the lab work, he will revisit with the Endocrinologist to see if the Prolactin levels have decreased and other levels have decreased. He will be scheduled for an MRI in about four months and then another about a year after that.
Medication
He was prescribed 0.5 mg of Cabergoline, which is generic for Dostinex and is to take this twice a week. It is a stronger medication, but the side effects will be less serious and the only real possible side effect the doctor was concerned with was some nausea. Eventually, he will decrease the medication to once a week. If the medication is not proven effective, then we will have to revisit this to see about other options. However, the doctor does feel strongly that the medication will do the trick.
Note
Carl will be on medication for the rest of his life.
Cause
Dr. Asamoah said they have no explanation as to why anyone’s Prolactin levels increase. Basically what happens is the hormones split, causing each hormone to think it needs to increase to a sufficient level. The brain, for some reason, does not attempt to stop this when it happens. 99.999999% of the time, this is a benign tumor. They know this through years of study. The only case the Endocrinologist has ever proved malignant is in a woman who had breast cancer and the cancer metastasized to her brain.
Diagnosis
Dr. Asamoah believes Carl’s tumor is small enough that it will be treatable by medicine. Carl will have some more lab work done in about four weeks. Two weeks after the lab work, he will revisit with the Endocrinologist to see if the Prolactin levels have decreased and other levels have decreased. He will be scheduled for an MRI in about four months and then another about a year after that.
Medication
He was prescribed 0.5 mg of Cabergoline, which is generic for Dostinex and is to take this twice a week. It is a stronger medication, but the side effects will be less serious and the only real possible side effect the doctor was concerned with was some nausea. Eventually, he will decrease the medication to once a week. If the medication is not proven effective, then we will have to revisit this to see about other options. However, the doctor does feel strongly that the medication will do the trick.
Note
Carl will be on medication for the rest of his life.
Wednesday, April 9, 2008
God is Amazing
Isn't He? I sent an email through an online prayer request at our church. I later received a very special call from a woman regarding her husband and his specialization in the pituitary gland. Here is a portion of what her husband emailed her to help us:
...I have met Dr. Asamoah briefly at a speaker training event in February (in Florida) - he is a general endocrinologist who lists pituitary disorders as among his clinical interests (AACE directory). ...he is a reasonable first endocrinologist to see.
...prolactinomas are usually able to be managed by medication and it is now quite unusual to require surgery - although it can happen. It is important to get all the facts as there can be "curve balls".
...recommend Dr. James Edmondson at IU Medical Center but if the patient wants an expert second opinion on a difficult prolactinoma, I would recommend Dr. Mark Molitch at Northwestern in Chicago. He is an expert in prolactinomas and Chicago is closer than Charlottesville or Boston!
...Surgery on pituitary tumors should only be done by surgeons who specialize in pituitary surgery, usually at major medical centers.
...members of the Pituitary Society : Paul Nelson (IU Med Ctr), Aaron Cohen-Godal (Methodist & St. Vincent).
I emailed Dr. Molitch asking if he would see us for a second opinion. That is what we have thus far.
Please pray for Carl's doctor appointment tomorrow, that it all goes according to God's plan.
...I have met Dr. Asamoah briefly at a speaker training event in February (in Florida) - he is a general endocrinologist who lists pituitary disorders as among his clinical interests (AACE directory). ...he is a reasonable first endocrinologist to see.
...prolactinomas are usually able to be managed by medication and it is now quite unusual to require surgery - although it can happen. It is important to get all the facts as there can be "curve balls".
...recommend Dr. James Edmondson at IU Medical Center but if the patient wants an expert second opinion on a difficult prolactinoma, I would recommend Dr. Mark Molitch at Northwestern in Chicago. He is an expert in prolactinomas and Chicago is closer than Charlottesville or Boston!
...Surgery on pituitary tumors should only be done by surgeons who specialize in pituitary surgery, usually at major medical centers.
...members of the Pituitary Society : Paul Nelson (IU Med Ctr), Aaron Cohen-Godal (Methodist & St. Vincent).
I emailed Dr. Molitch asking if he would see us for a second opinion. That is what we have thus far.
Please pray for Carl's doctor appointment tomorrow, that it all goes according to God's plan.
Tuesday, April 8, 2008
Up and Coming Thursday Appointment
Carl is doing all right. He has an appointment with the Endocrinologist Thursday morning. He is experiencing some symptoms that they say only 14 in 10,000 people should experience with this type of tumor. I am hoping we will find out some more on Thursday about what these symptoms mean. I think they have to take some more blood tests to see if the tumor has affected other hormone levels in his brain. I can tell it has affected them, that is for sure. We do not know if the tumor has done any permanent damage to the other hormones.
He has headaches from time to time. The PCP prescribed 500 mg of Vicodin for him. It did not seem to work well enough, so he is also now taking 800 mg of Ibuprofen. He gets vision problems from time to time where his right eye will get tunnel vision, then twitch like crazy, go blurry, and then return to normal. It is very strange.
He has had some temper problems, nothing serious. But, he said when he gets angry, he does not feel like Carl. He said it feels like something completely different. He can control it, but he snaps a lot easier right now. It really bothers him. Carl likes to say he is not worried. But, I think we all know better.
We should find out on Thursday if the Endocrinologist wants to go with one of three treatment options:
Medication, which could shrink the tumor – his tumor may be too large for medication
Radiation, which I am sure you know what can happen with radiation (hair loss, etc.)
Surgery (three options for surgery)
Through the back of the head
Through the gum line
Through the nasal passage
Amazingly enough, we put in a prayer request for him at church. The lady who "farms" the prayer requests out to the appropriate individuals called me herself yesterday. She just so happens to be married to a physician who specializes in the pituitary gland (God is amazing). She is getting some information from him and will get back with me about Neurosurgens and Endocrinologists.
God is definitely amazing.
He has headaches from time to time. The PCP prescribed 500 mg of Vicodin for him. It did not seem to work well enough, so he is also now taking 800 mg of Ibuprofen. He gets vision problems from time to time where his right eye will get tunnel vision, then twitch like crazy, go blurry, and then return to normal. It is very strange.
He has had some temper problems, nothing serious. But, he said when he gets angry, he does not feel like Carl. He said it feels like something completely different. He can control it, but he snaps a lot easier right now. It really bothers him. Carl likes to say he is not worried. But, I think we all know better.
We should find out on Thursday if the Endocrinologist wants to go with one of three treatment options:
Medication, which could shrink the tumor – his tumor may be too large for medication
Radiation, which I am sure you know what can happen with radiation (hair loss, etc.)
Surgery (three options for surgery)
Through the back of the head
Through the gum line
Through the nasal passage
Amazingly enough, we put in a prayer request for him at church. The lady who "farms" the prayer requests out to the appropriate individuals called me herself yesterday. She just so happens to be married to a physician who specializes in the pituitary gland (God is amazing). She is getting some information from him and will get back with me about Neurosurgens and Endocrinologists.
God is definitely amazing.
Saturday, April 5, 2008
Right Eye
Carl's still having problems with his right eye. He says he can "feel" pressure behind it. It still screws up his vision. He has a hard time explaining it. He says he can "feel" it and it makes his eye go quirky, as if he's almost in a daze, like a he "just woke from a bad nap" daze. The pressure seems to be worse on his optic nerve.
Thursday, April 3, 2008
Introduction to the Pituitary Gland - from www.pituitary.org
The pituitary is a small, bean-shaped gland located below the brain in the skull base, in an area called the pituitary fossa or sella turcica. The gland is regulated by a region of the brain called the hypothalamus and they are connected by a thin delicate vascular connection called the pituitary stalk or infundibulum. Weighing less than one gram and measuring a centimeter in width, the pituitary gland is often called the "master gland" since it controls the secretion of the body’s hormones. These substances when released by the pituitary into the blood stream have a dramatic and broad range of effects on growth and development, sexuality and reproductive function, metabolism, the response to stress and overall quality of life. The pituitary gland is thus at the anatomical and functional crossroads of the brain, mind and body.
Structurally, the pituitary gland is divided into a larger anterior region (adenohypophysis) and a smaller posterior region (neurohypophysis). Directly above the pituitary gland are the crossing fibers of the optic nerves called the optic chiasm as well as the optic nerves as they project to the eyes. On each side of the pituitary gland is the cavernous sinus which is a venous channel through which runs the large carotid arteries that carry blood to the brain, and important nerves that control eye movements and facial sensation. Because of the close proximity of the pituitary gland to these major intracranial nerves and blood vessels, as well as the vital hormonal control the pituitary gland provides, disorders of the pituitary can cause a wide spectrum of symptoms, both hormonal and neurological.
Listed below are the specific hormones produced by the pituitary:
Growth Hormone (GH): This is the principal hormone that, among many other functions, regulates body and brain development, bone maturation, metabolism and is essential for healthy muscles.
Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH): These hormones control the production of sex hormones (estrogen and testosterone) as well as sperm and egg maturation and release.
Prolactin (PRL): This hormone stimulates secretion of breast milk.
Thyroid Stimulating Hormone (TSH): This hormone stimulates the thyroid gland to release thyroid hormones. Thyroid hormones control basal metabolic rate and play an important role in growth and maturation. Thyroid hormones affect almost every organ in the body.
Adrenocorticotropic Hormone (ACTH): This hormone triggers the adrenal glands (located above the kidneys) to release the hormone cortisol which in turn, regulates carbohydrate, fat, and protein metabolism and is essential in the stress response.
Vasopressin - Also called anti-diuretic hormone (ADH): This hormone promotes water to be reabsorbed by the kidneys and is thus essential in water and electrolyte balance.
In disease states, the pituitary gland may under- or over-produce hormones. Decreased or absent hormone production from the pituitary gland is called hypopituitarism (Pituitary Failure).Prolactin Levels
I hadn't thought about it before, but it was suggested that I find out what Carl's Prolactin Level was when he had it checked. Normal Prolactin levels are between 2.1 and 17.7. On March 19, Carl's Prolactin level was 517.3.
I'm waiting to find out exactly where in his head the tumor is located. I am on some support group websites, which helps because I'm finding out more information daily to help us better understand this disease. I will keep all of you updated on my findings.
I am also going to find a physician who specializes in neuro eye problems to get Carl's eyes examined. I think we'll wait until after we see the Endocrinologist because I want to see if he knows someone to refer us to.
There is an association, if you're interested. It's called The Pituitary Network Association. It's created by a man named Robert Knutzen. The website is http://www.pituitary.org/. This website states "Sixty-five million North Americans suffer silently from pituitary and hormonal disorders." That's one in five people.
Here are some symptoms of a Pituitary Disorder from the website:
Headaches
Depression
Mood/Emotion Swings
Anger
Loss of Memory
Loss of Sleep
Sexual Dysfunction
Eating Disorders - Anorexia - Obesity - Bulimia - Weight Gain
Lethargy
Weakness in Limbs
High Blood Pressure
Diabetes
Infertility
Impotence
Irregular Menses
Lactating
Unusual Hair Growth
I'm waiting to find out exactly where in his head the tumor is located. I am on some support group websites, which helps because I'm finding out more information daily to help us better understand this disease. I will keep all of you updated on my findings.
I am also going to find a physician who specializes in neuro eye problems to get Carl's eyes examined. I think we'll wait until after we see the Endocrinologist because I want to see if he knows someone to refer us to.
There is an association, if you're interested. It's called The Pituitary Network Association. It's created by a man named Robert Knutzen. The website is http://www.pituitary.org/. This website states "Sixty-five million North Americans suffer silently from pituitary and hormonal disorders." That's one in five people.
Here are some symptoms of a Pituitary Disorder from the website:
Headaches
Depression
Mood/Emotion Swings
Anger
Loss of Memory
Loss of Sleep
Sexual Dysfunction
Eating Disorders - Anorexia - Obesity - Bulimia - Weight Gain
Lethargy
Weakness in Limbs
High Blood Pressure
Diabetes
Infertility
Impotence
Irregular Menses
Lactating
Unusual Hair Growth
Tuesday, April 1, 2008
Headaches
As much as Carl says it's not really a big problem and there's really no change, he's getting more painful headaches. Tonight, while I was working, he could barely function. He told me later they were so bad, he couldn't move. He just put his head back on the couch and closed his eyes. He said it took everything he had to get up.
I know he doesn't want me to stress. But, really?
We talked some about Power of Attorney's tonight. Since there is the slight chance he would have to go in for surgery, we want to make sure everything is in place. We talked some about setting up wills, trusts, etc.
Carl keeps saying, "They do brain surgery all the time." Sure. But, they don't do brain surgery on him all the time and as great of doctors as they might be, they are only human.
Maybe we're talking too early for this. We only want to make sure we have all our ducks in order. I don't like this reality of all these "just in case" topics. Especially since it is potentially real now.
I just hope that we are psyching ourselves out and it is treatable with medication. I pray it is. Please pray for Carl.
I know he doesn't want me to stress. But, really?
We talked some about Power of Attorney's tonight. Since there is the slight chance he would have to go in for surgery, we want to make sure everything is in place. We talked some about setting up wills, trusts, etc.
Carl keeps saying, "They do brain surgery all the time." Sure. But, they don't do brain surgery on him all the time and as great of doctors as they might be, they are only human.
Maybe we're talking too early for this. We only want to make sure we have all our ducks in order. I don't like this reality of all these "just in case" topics. Especially since it is potentially real now.
I just hope that we are psyching ourselves out and it is treatable with medication. I pray it is. Please pray for Carl.
A List of Things Carl's Currently Experiencing
a) Headaches (we know this is related to the tumor) - the headaches have gone from weekly headaches a month ago to daily headaches. He has been prescribed Vicodin to relieve the pain.
b) Vision Problems - his eye twitches, goes blurry, and then back to normal. We don't know why.
c) Short Temper - he broke down the other night because he doesn't know why he cannot control his temper. He says he doesn't feel like himself when he gets angry and it's as if he cannot control it.
We still don't know if the Endocrinologist will require surgery or if he will feel medication will be enough.
I Love My Husband
Carl, our two youngest, and I just got home from our wonderful trip to Louisiana. We had a great time and are thankful for the time we were able to spend with my entire family as it's been a long time since we've all been in the same room together.
Carl's headaches are more frequent. They are not more painful, nor are they causing any other symptoms. He is simply out of commission while experiencing the headaches to the point where he is forced to take two prescribed Vicodin.
We read some where there are connections between Prolactinoma and Thyroid problems. Carl is hopeful because it might help his weight if the decrease in tumor helps any potential thyroid problems, thus decreasing his weight.
While on the road today, we found an endocrine website that offered a great deal of information regarding Prolactinoma, the medications involved when patients are treated with medications, the possibility that Prolactinoma could reoccur, and that medicine could also potentially be taken for years to treat this tumor. Here is the website if you are interested: http://www.endocrine.niddk.nih.gov/pubs/prolact/prolact.htm.
I also called them to request further information through the mail so we will have better preparation when we meet with the Endocrinologist. I do not want to leave out any vital questions.
Carl's headaches are more frequent. They are not more painful, nor are they causing any other symptoms. He is simply out of commission while experiencing the headaches to the point where he is forced to take two prescribed Vicodin.
We read some where there are connections between Prolactinoma and Thyroid problems. Carl is hopeful because it might help his weight if the decrease in tumor helps any potential thyroid problems, thus decreasing his weight.
While on the road today, we found an endocrine website that offered a great deal of information regarding Prolactinoma, the medications involved when patients are treated with medications, the possibility that Prolactinoma could reoccur, and that medicine could also potentially be taken for years to treat this tumor. Here is the website if you are interested: http://www.endocrine.niddk.nih.gov/pubs/prolact/prolact.htm.
I also called them to request further information through the mail so we will have better preparation when we meet with the Endocrinologist. I do not want to leave out any vital questions.
Tuesday, March 25, 2008
Trip
We're heading South to celebrate my niece's wedding. We are so excited and proud of her. It's hard to believe she's getting married.
My lovely father (and I love him so much) doesn't think Carl will be able to drive down during the night and that should now be my job. Fortunately, he can still do that. He's not incapacitated. I understand daddy's worry. But, we will handle it just fine. I'm just looking forward to seeing my brother. I can't wait to see him again - I have missed him so much (though, I'm not sure why).
Things will be great. If you read this, pray for us all to have a safe trip down and a safe trip home.
My lovely father (and I love him so much) doesn't think Carl will be able to drive down during the night and that should now be my job. Fortunately, he can still do that. He's not incapacitated. I understand daddy's worry. But, we will handle it just fine. I'm just looking forward to seeing my brother. I can't wait to see him again - I have missed him so much (though, I'm not sure why).
Things will be great. If you read this, pray for us all to have a safe trip down and a safe trip home.
Monday, March 24, 2008
What is Prolactinoma?
Courtesy of MayoClinic.com
INTRODUCTION
Prolactinoma is a condition in which a noncancerous tumor (adenoma) of the pituitary gland in your brain overproduces the hormone prolactin. The major effect of increased prolactin is a decrease in normal levels of sex hormones — estrogen in women and testosterone in men.
Although prolactinoma isn't life-threatening, it can cause visual impairment, infertility and other effects. Prolactinoma is one of several types of tumors that can develop in your pituitary gland.
Doctors often are able to effectively treat prolactinoma with medications to restore your prolactin level to normal. Surgery to remove the pituitary tumor also may be an option to treat prolactinoma.
SIGNS AND SYMPTOMS
The signs and symptoms of prolactinoma result from excessive prolactin in your blood (hyperprolactinemia) and, if the tumor is large, from the pressure of the tumor on surrounding tissues. Because elevated levels of the hormone prolactin cause disruption of the reproductive system (hypogonadism), some of the signs and symptoms of prolactinoma are unique for each sex.
In some cases, there aren't any signs and symptoms. But when there are, prolactinoma symptoms may include:
In females
Irregular menstrual periods (oligomenorrhea) or lack of menstrual periods (amenorrhea)
Milky discharge from the breasts (galactorrhea) when not pregnant or breast-feeding
Painful intercourse due to vaginal dryness
Low bone density
Irregular menstrual periods (oligomenorrhea) or lack of menstrual periods (amenorrhea)
Milky discharge from the breasts (galactorrhea) when not pregnant or breast-feeding
Painful intercourse due to vaginal dryness
Low bone density
In males
Erectile dysfunction (ED)
Uncommonly, enlarged breasts (gynecomastia)
Erectile dysfunction (ED)
Uncommonly, enlarged breasts (gynecomastia)
In both
Reduced hormone production by the pituitary gland (hypopituitarism) as a result of tumor pressure
Loss of interest in sexual activity
Headaches
Visual disturbances
Infertility
Reduced hormone production by the pituitary gland (hypopituitarism) as a result of tumor pressure
Loss of interest in sexual activity
Headaches
Visual disturbances
Infertility
Women tend to notice signs and symptoms earlier than men do, when tumors are smaller in size, probably because they're alerted that there might be a problem due to missed or irregular menstrual periods. Men, on the other hand, tend to notice signs and symptoms later, when tumors are much larger and more likely to cause headache or vision problems.
CAUSES
The pituitary and your endocrine system The pituitary gland is a small bean-shaped gland located at the base of your brain. Despite its small size, the pituitary gland influences nearly every part of your body. Its hormones help regulate important functions such as growth, blood pressure and reproduction.
The pituitary gland is part of your endocrine system, which consists of other glands that produce hormones that regulate many processes throughout your body. Besides the pituitary gland, the endocrine system includes the thyroid gland, parathyroid glands, adrenal glands, pancreas, ovaries (in females) and testicles (in men).
Pituitary tumors Prolactinoma is one type of tumor that develops in the pituitary gland. Some pituitary tumors may produce hormones in excess (functioning pituitary tumors), but most don't (nonfunctioning pituitary tumors).
The cause of pituitary tumors remains unknown. Although these pituitary tumors are almost always noncancerous (benign), which means they don't spread to other parts of your body, they can increase in size. Because they grow in such limited space, they can compress and damage the normal pituitary tissue, interfering with hormone production. A tumor can also compress your optic nerves, slowly causing a loss of vision.
Other causes of prolactin overproduction Overproduction of prolactin can result from causes other than a prolactinoma, including:
Medications. The secretion of prolactin in your pituitary gland normally is suppressed by the brain chemical dopamine. Drugs that block the action of dopamine in your pituitary gland or that decrease the amount of dopamine that's produced and stored in your brain may cause excess prolactin production, including:
Tranquilizers, such as trifluoperazine and haloperidol
Anti-nausea and gastroesophageal reflux disease (GERD) drugs, such as metoclopramide (Reglan)
High blood pressure (hypertension) medications, such as methyldopa and reserpine.
Other pituitary tumors. Other tumors in or near your pituitary gland, such as nonfunctioning tumors and those that can cause overproduction of growth hormone (acromegaly) or the hormone cortisol (Cushing's disease), may block the flow of dopamine from your brain to your pituitary gland.
Hypothyroidism. Excess production of prolactin may occur in people with severe and long-standing hypothyroidism — insufficient hormone production by your thyroid gland.
Pregnancy, breast-feeding and breast stimulation. During pregnancy, a woman's prolactin level normally increases to prepare her breasts for milk production. After delivery, the prolactin level returns to normal, but increases again each time a baby feeds. Breast stimulation unrelated to pregnancy or breast-feeding also may cause breast discharge and a mild increase in the prolactin level.
Anti-nausea and gastroesophageal reflux disease (GERD) drugs, such as metoclopramide (Reglan)
High blood pressure (hypertension) medications, such as methyldopa and reserpine.
Other pituitary tumors. Other tumors in or near your pituitary gland, such as nonfunctioning tumors and those that can cause overproduction of growth hormone (acromegaly) or the hormone cortisol (Cushing's disease), may block the flow of dopamine from your brain to your pituitary gland.
Hypothyroidism. Excess production of prolactin may occur in people with severe and long-standing hypothyroidism — insufficient hormone production by your thyroid gland.
Pregnancy, breast-feeding and breast stimulation. During pregnancy, a woman's prolactin level normally increases to prepare her breasts for milk production. After delivery, the prolactin level returns to normal, but increases again each time a baby feeds. Breast stimulation unrelated to pregnancy or breast-feeding also may cause breast discharge and a mild increase in the prolactin level.
RISK FACTORS
Most prolactinomas occur in people younger than 40, but the disorder is rare in children. Pituitary tumors are much more likely in women than in men. Women are more likely to be younger when they develop prolactinoma, while men tend to be older.
WHEN TO SEEK MEDICAL ADVICE
If you develop signs and symptoms associated with prolactinoma, see your doctor to determine the cause. The disorder often can be treated effectively with medications to return your prolactin level to normal and alleviate your signs and symptoms.
SCREENING AND DIAGNOSIS
Blood tests can detect the overproduction of prolactin as a result of a pituitary tumor. Blood tests can also detect if levels of other hormones controlled by the pituitary are within the normal range. Additionally, your doctor may recommend:
Brain imaging. Your doctor may be able to detect a pituitary tumor on an image generated by a computerized tomography (CT) or magnetic resonance imaging (MRI) scan of your brain.
Tests of your vision. Such tests can determine if growth of a pituitary tumor has impaired your sight or peripheral vision.
In addition, your doctor may refer you for more extensive testing with a doctor who specializes in treating disorders of the endocrine system (endocrinologist).
COMPLICATIONS
Complications of prolactinoma may include:
Vision loss. Left untreated, a prolactinoma may grow large enough to compress your optic nerves.
This usually begins with loss of peripheral vision, but can progress to blindness.
Hypopituitarism. With larger prolactinomas, pressure on the normal pituitary gland can cause dysfunction of other hormones controlled by the pituitary, resulting in hypothyroidism, adrenal insufficiency and growth hormone deficiency.
Bone loss (osteoporosis). Too much prolactin can reduce production of the hormone estrogen, resulting in decreased bone density and increasing your risk of osteoporosis.
Pregnancy complications. During a normal pregnancy, a woman's pituitary gland enlarges and prolactin production increases. A woman who has a large prolactinoma and becomes pregnant may experience additional pituitary growth and associated signs and symptoms, such as headaches, changes in vision, nausea, vomiting, excessive thirst or urination, and extreme fatigue.
If you have a prolactinoma and you want to become or you already are pregnant, discuss the situation with your doctor because adjustments in your treatment and monitoring may be necessary.
Hypopituitarism. With larger prolactinomas, pressure on the normal pituitary gland can cause dysfunction of other hormones controlled by the pituitary, resulting in hypothyroidism, adrenal insufficiency and growth hormone deficiency.
Bone loss (osteoporosis). Too much prolactin can reduce production of the hormone estrogen, resulting in decreased bone density and increasing your risk of osteoporosis.
Pregnancy complications. During a normal pregnancy, a woman's pituitary gland enlarges and prolactin production increases. A woman who has a large prolactinoma and becomes pregnant may experience additional pituitary growth and associated signs and symptoms, such as headaches, changes in vision, nausea, vomiting, excessive thirst or urination, and extreme fatigue.
If you have a prolactinoma and you want to become or you already are pregnant, discuss the situation with your doctor because adjustments in your treatment and monitoring may be necessary.
TREATMENT
Specific goals in the treatment of prolactinoma include:
Return the production of prolactin to normal levels
Restore normal pituitary gland function
Eliminate galactorrhea
Reduce the size of the pituitary tumor
Eliminate any signs or symptoms from tumor pressure, such as headaches or vision problems
Return the production of prolactin to normal levels
Restore normal pituitary gland function
Eliminate galactorrhea
Reduce the size of the pituitary tumor
Eliminate any signs or symptoms from tumor pressure, such as headaches or vision problems
Prolactinoma treatment consists of two main therapies, medications and surgery:
Medications Oral medications often can decrease the production of prolactin and eliminate symptoms. Medications may also shrink the tumor. However, long-term treatment with medications is generally necessary.
Medications Oral medications often can decrease the production of prolactin and eliminate symptoms. Medications may also shrink the tumor. However, long-term treatment with medications is generally necessary.
Doctors use drugs known as dopamine agonists to treat prolactinoma. These drugs mimic the effects of dopamine — the brain chemical that normally controls prolactin production — but are much more potent and long lasting. Commonly prescribed medications include bromocriptine (Parlodel) and cabergoline (Dostinex). These drugs decrease prolactin production and may shrink the tumor in most people with prolactinoma.
Bromocriptine is the preferred drug when treating women who want to restore their fertility because its safety in pregnancy is well established. Common side effects of these medications include lightheadedness, nausea and nasal stuffiness. However, these side effects often can be minimized if your doctor starts you with a very low dose of medication and gradually increases the dose.
If medication effectively shrinks the tumor and your prolactin level remains normal afterward, you may be able to eventually stop taking the medication. Your doctor can offer you advice on when this may be possible for you.
Surgery If drug therapy for the treatment of prolactinoma is unsuccessful or not tolerated, surgery
The type of surgery you have depends largely on the location and the size of your tumor. Most people who need surgery have a transsphenoidal procedure. In this surgery, the tumor is removed through the nasal cavity. Complication rates from this type of surgery are low because no other areas of the brain are touched during surgery, and this surgery leaves no visible scars. However, transsphenoidal surgery may not be best for some large tumors, or for tumors that have spread to nearby brain tissue. If this is the case for you, you may need a transcranial procedure, also known as a craniotomy. This procedure involves accessing the tumor through the upper part of the skull.
The outcome of surgery depends on the size and location of the tumor and if your prolactin level is extremely high. The higher the prolactin level, the slimmer the chance that your prolactin production will return to normal after surgery. Surgery corrects the prolactin level in most people with small pituitary tumors. However, many pituitary tumors recur within five years after surgical removal. For people with larger tumors that can only be partially removed, drug therapy often can return the prolactin level to a normal range after surgery.
Questions for the Doctor
What do we ask? I've been given many suggestions.
How do you know this is benign without doing a biopsy?
What do we do about the headaches?
If you don't perform surgery, how long does it take for the medication to shrink the tumor?
How many surgeries like this has this doctor performed?
How many surgeries like this have been performed at that hospital?
What's the odds of it coming back?
What's the odds of more tumors developing?
What about the reports I've heard that elevated levels of this hormone are signs of prostate cancer?
Any other questions you think we should ask? Let me know.
How do you know this is benign without doing a biopsy?
What do we do about the headaches?
If you don't perform surgery, how long does it take for the medication to shrink the tumor?
How many surgeries like this has this doctor performed?
How many surgeries like this have been performed at that hospital?
What's the odds of it coming back?
What's the odds of more tumors developing?
What about the reports I've heard that elevated levels of this hormone are signs of prostate cancer?
Any other questions you think we should ask? Let me know.
Saturday, March 22, 2008
So Carl has a tumor...first blog
So, Carl has a tumor. My husband has a brain tumor. The doctor says it's not life-threatening. She says it's benign and will not turn cancerous. Everything I've read even says that. But, I still worry. It's my husband. It's the father of my children.
Philippians 4:6 says, "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God."
So, I will pray. I won't pray for God to take away the tumor, as bad as I want Him to. I want Him to do a lot of things right now. But, I learned a long time ago that's not how it works. So, all I can do is pray that He will take care of it the way that's according to His plan. What a bittersweet feeling because I'm so anxious to see what He does have planned, yet I'm also terrified.
But, we aren't going to sit back and think for the worst. I will expect for the worst and hope for the best. On April 10, when we go to see the Endocrinologist, we will then know our next step.
Until then, please pray for Carl. He gets bad headaches and is still experiencing some blurred vision. I don't even know what to pray for. I will pray that God helps us find strength within ourselves to get through all of this, no matter what the outcome.
Philippians 4:6 says, "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God."
So, I will pray. I won't pray for God to take away the tumor, as bad as I want Him to. I want Him to do a lot of things right now. But, I learned a long time ago that's not how it works. So, all I can do is pray that He will take care of it the way that's according to His plan. What a bittersweet feeling because I'm so anxious to see what He does have planned, yet I'm also terrified.
But, we aren't going to sit back and think for the worst. I will expect for the worst and hope for the best. On April 10, when we go to see the Endocrinologist, we will then know our next step.
Until then, please pray for Carl. He gets bad headaches and is still experiencing some blurred vision. I don't even know what to pray for. I will pray that God helps us find strength within ourselves to get through all of this, no matter what the outcome.
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