Prolactinoma Support Group
A prolactinoma is a benign tumor of the pituitary gland that produces a hormone called prolactin. It is the most common type of pituitary tumor. Symptoms of prolactinoma are caused by too much prolactin in the blood or by pressure of the tumor on surrounding tissues. Prolactin stimulates the breast to produce milk during pregnancy. After delivery of the baby, a mother's...
So, after MUCH consideration, I think I am going to move ahead with surgery. Thank you all for your thoughts and sharing your experiences--it's been helpful. I've now met with three separate doctors who think that surgery is the best option for me, and it sounds like my risks are low, so I think I'm going to take the plunge.
Anyway, I had an interesting convo with my prospective surgeon regarding risk factors and success rates, and thought I'd share with you all. I've poured over reports and scientific papers about average success rates and risks, but it was REALLY interesting to talk to a surgeon to understand things better for my particular situation. A key takeaway is that you have to remember that published statistics are generally averages across ALL types and sizes of prolactinomas, as well as surgeon skill, but reality is more nuanced for individual cases.
In particular, my doctor thinks my risk factors are low since my tumor is small (4-5 mm). Smaller tumors tend to have lower risks and higher success rates. Also, the pituitary can be damaged when it's essentially smooshed by a large tumor, which can cause complications.
Also, the fact that my prolactin levels peaked at 120 is a good sign. When levels are
Anyway, I had an interesting convo with my prospective surgeon regarding risk factors and success rates, and thought I'd share with you all. I've poured over reports and scientific papers about average success rates and risks, but it was REALLY interesting to talk to a surgeon to understand things better for my particular situation. A key takeaway is that you have to remember that published statistics are generally averages across ALL types and sizes of prolactinomas, as well as surgeon skill, but reality is more nuanced for individual cases.
In particular, my doctor thinks my risk factors are low since my tumor is small (4-5 mm). Smaller tumors tend to have lower risks and higher success rates. Also, the pituitary can be damaged when it's essentially smooshed by a large tumor, which can cause complications.
Also, the fact that my prolactin levels peaked at 120 is a good sign. When levels are
Anyway, I had an interesting convo with my prospective surgeon regarding risk factors and success rates, and thought I'd share with you all. I've poured over reports and scientific papers about average success rates and risks, but it was REALLY interesting to talk to a surgeon to understand things better for my particular situation. A key takeaway is that you have to remember that published statistics are generally averages across ALL types and sizes of prolactinomas, as well as surgeon skill, but reality is more nuanced for individual cases.
In particular, my doctor thinks my risk factors are low since my tumor is small (4-5 mm). Smaller tumors tend to have lower risks and higher success rates. Also, the pituitary can be damaged when it's essentially smooshed by a large tumor, which can cause complications.
Also, the fact that my prolactin levels peaked at 120 is a good sign. When levels are
Continuing from where my post got cut off... Apparently success rates are higher when prolactin levels are 200 or less (US measurement). And since all national rates are averaged across all surgeons, a particularly skilled surgeon might have much higher success/lower complication rates than the average. So, picking a good surgeon does matter!
DISCLAIMER: This info was really really specific to my condition. I'm sure it's not relevant to everyone. However, I found it fascinating to take a closer look at national statistics, and thought I'd share.
The size of the tumor is really small. Are your symptoms severe? Why did the doctors suggest surgery?
Good luck with your surgery.
I have also elected to talk to surgeons now because of the many side effects of the medications and my ever dwindling quality of life.
I hope that I get the same positive responses from mine over here in the UK. My tumor is 9.5mm x 8mm so a little larger than yours which worries me.
Best wishes xxx
So, all that was weighed against the fact that b/c it IS small, the success rates seem pretty good and the complication rates pretty low.
It was definitely a decision that required a lot of weighing pros and cons. After awhile it just seemed that, there are very real consequences of NOT having the surgery, so I had to weigh that against the potential risks, which seem to be relatively low for my situation.
Still, a bit scary to think about! The people on Daily Strength have been great. I connected with several other people who had surgery and it was helpful to hear their experiences.