Pituitary Tumor Due To High Prolactin

Hi there - my son David was diagnosed (after 4 years of running around from doc to idiot and back to doc) with a pituitary tumor at age 8. This was an ACTH (Adreno Cortico Tropin Hormone) secreting tumor. The disease; Cushing's Disease. David has had 4 lots of Trans-sphenoidal surgery to decrease the tumor mass. At age 11, weighing over 120 kilograms, we made the decision to remove David's adrenal glands to buy him some time. We were told, he has a few years. From the bilateral adrenalectomy he would develop Nelson's Disease. This was confirmed at age 16. From then until 2012, David had 2 more surgeries to reduce the tumor size. His sight in 1 eye was affected by the pressure of the tumor. David has remained positive throughout this life time ordeal. It has not been easy, but he was rewarded with a drastic reduction in tumor size after 21 years. For the first time in 21 years, we can see David's Pituitary gland on an MRI - no tumor anywhere near the gland. There is some residual tissue left which is more than likely scar tissue from the surgeries, We went to the doc that day to plan radiation treatment...but we got this amazing surprise instead! No radiation. No more surgeries for at least 2 years. David takes covocort & fludrocortizone daily to replace what the adrenal glands would do. He is on some cabergoline now - a low dose - and is doing extremely well. What you are experiencing is normal for anyone in your situation. Surgery recovery is so quick - each time, David was up and about in 3 days and back to normal within 7 days. He loved to show off how quickly he could recover! The after affects of surgery were minimal. David is now 24 - alive (despite predictions) happy & healthy as he can be. His team of Doctors are fascinated by his medical history and by his wonderful and positive attitude to having 2 extremely rare disorders. David is a walking medical miracle. His afflictions were of the worst kind, as a young child and as a teenager he endured a great deal of teasing and mean comments. Today, these same kids and adults treat him with respect and admire him. As a family, our helplessness in not being able to do anything to help him got to all of us. Not knowing much and not educating people in our family and friend circle in the beginning created many difficulties, so we decided to find out as much as we could about the disease, we educated everyone in a forthright manner and ignored the ignoramuses. Share what you go through and feel with your family - learn for yourself what the meds you are prescribed do and don't do, so you are prepared, and make yourself an expert on your disease. Knowledge gives you power and understanding, and if you have this, you don't come across as helpless and those around you will admire your strength and be more understanding. Their misunderstanding is often the reason for them not being understanding or helpful and they could also be fearful of the 'unknown' and not want to harp on it. They might even feel that they are protecting you, distracting you, by not listening attentively. We discovered that by sharing as much as we could with people, we actually received more assistance and loads more encouragement. We even have heroes who heard our stories and saved the day on many occasions!
21 years ago, these tumors were not easy to diagnose - great strides have been made and if you look to your future, you will find that you can overcome the problems, set backs and down-sides of your illness by looking forward to getting better. Baby steps or big leaps - every day you deal with your illness, is a phenomenal achievement. Your reward is the story you will have to tell. Be strong and of great courage - live your life to the absolute best of your ability. Embrace each positive step in your treatment, no matter how small. I documented as much as I could with photo's and journals and shared David's story at every opportunity - he continues to do this same thing today out of his own. He is an expert on making the big problems seem almost insignificant. We made each moment count. When we look back, we see what we actually overcame! David is now helping me through my newly diagnosed cancer.......and yes; we laugh lots! His faith, his spirit of cheer, his encouragement...I'm wowed by this - and he knows what he's talking about, since he's been through the wringer and back many times. We once decorated our street and the oak tree outside our house with yellow ribbons and balloons, the speakers blared out "100 Yellow ribbons round the old oak tree" - all to welcome David home after a difficult surgery. He was very sick, very sore, and miserable, but oh!! The memories he has!! See, once the healing starts, and as the years go by, you look back on the ribbons and balloons...not the after-affects of surgery. Once we had t-shirts made up; another time we hosted a welcome home party and we all wore yellow...my daughter & her friends lined the street, all dressed in yellow, cheer leading with silver pom-pom's. The first thing David saw when he turned into our street were pretty girls cheering him on. At the party we presented him with a huge yellow cap, with 4 enormous yellow feathers - each one signifying a successful surgery. We have had so many wonderful times and have amazing memories of moments that would not have been possible if David did not have a tumor on his Pituitary. I send you ALL hundreds of yellow balloons............ :)

I too have just been diagnosed and have these same symptoms. I am so scared to go to the endocrinologist and he is going to recommend surgery. what were your feelings when you first found out?

I too have the same tumour. The leaking breasts have stopped but come back from time to time, but my other symptoms are worse, bad moods, headaches, insomnia, stomach pains and nasal congestion, am dealing with this on my own. I lost alot of friends when i was diagnosed, i wasnt as sociable anymore and i have no family either so its all too much. I am on Bromicriptine, I was on cabergoline, but the those pills didnt agree with my body. I also cannot have children at the moment until the tumour and symptoms reduce so I know exactly how you feel. I literally just get on with things as best I can. I hope the meds have reduced the size of your tumour as mine started to grow even on the pills, its a nightmare but you are not alone :-)

I know exactly what you are going through. Have been dealing with it since I was 16. Currently on Cabergoline and Topamax. Feeling extremely irritable since no one in my family really understands just how frustrating it is to have to real answers to things. Do you have children?

I also have a tumor causing high prolactin. I'm on cabergoline, and it's helping.

*thanks

than you for the kind thoughts!