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 for all who may not know me, I had was diagnosed with a 7cm prolactinoma back in March. Had a very lengthy surgery and spent a week in the hospital. My neurosurgeon is great. He was able to remove 80% of the tumor, so I've been left with a small amount still around the carotid artery (one of them anyway). Been on 0.5mg Cabergoline twice a week since and it has been showing general regression since.
I don't usually have too many side effects from the Cab usage, although every once in a while I do have a day when I feel kind of foggy and dizzy.
I have my January MRI coming up on 1/8 and I've never felt more freaked.
My October MRI results although still showing improvement (regression) overall, there was a very subtle increase of the remaining part of the tumor that's still around the carotid from 16mm in June to 19mm as of my October MRI results. So, when I met with my neurosurgeon (3 weeks after that MRI which was such an unbelievably painful period of waiting to talk to him) he threw out a lot of possibilities. He said it looked it better overall and even my endocrinologist and he together corraborated and saw no reason to sound any alarm, but I'm never even neutral in mood, forget happy.
I know that all doctors have to cover their bases and lay out all the options and possibilities and they can never promise anything. But when he mentioned the possibility of a second surgery (which he even mentioned before the first surgery) among other things, my heart just sank! Since that moment, I've been living in terror. Absolute terror. I have not had a single day of even moderate happiness since and this whole year has been unbelievably difficult for me. On top of this medical issue that will probably now be with me indefinitely regardless of what has to happen next, my maternal grandmother just died a week ago along with her best friend literally without hours of her. Triple the misery with incredible financial difficulties and stress...couldn't even go shopping for the holidays if I wanted to...i think it's safe to say that 2014 has been one of the worst years of my life and I will not be sorry to see it go. I only pray 2015 isn't worse.
I'm not crazy or anything but I've literally felt emotionally crippled since the moment I left my neurosurgeon's office back in October. I wake up in the middle of the night in panic sometimes, I still have flashbacks of how miserable i was in the hospital this last March, the holidays are virtually nonexistent to me this year and are just as depressing as they were last year. It doesn't even feel at all like December in the least. The weather, while not an important talking point, is grotesque with this relentless affinity for 68 degree+ temperatures and incredible humidity even with the rain. I walk to the train stop in the morning and wonder why, in December, the air smells like 5 day old curry powder and body odor when it should be smelling crisp and smokey like Christmas. Yes, the air in CA actually smells like a rotting spice and B-O.
I can't even crack half a smile these days without having this tumor in the back of my mind, figuratively AND literally. I know there are probably people who have it much worse off than I do, but I'm really scared about the possibility of having to go back into the hospital. It's like having this ordeal all over again from the beginning, the only difference being that it would be done preventitively and not under urgent conditions like it was back in March.
I just started working for a new company back in September and the thought of having to complicate my life once again with a disability claim for a month not only freaks me out but makes me so angry just to think about it. Again, it's not a definite but it's always a possibility.
Heck I even talk to those damn pills when I swallow them praying that they continue to shrink the remaining tumor, but that's hardly scientifically sane.
Is it possible that portion of the tumor may yet show a decrease in size again come January 8th's MRI? Yes.
Is it possible the last 4 months of mental torture freaking out about what's going on in my head has really been way over-thought? Absolutely.
Is it possible the MRI from October wasn't necessarily 100% accurate and may interpret a shift of the remaining mass as an increase when their really wasn't much of one to speak of? Sure.
Is it possible all my fears could be realized, that the tumor will have again shown a continuing trend of subtle increase from 19mm to ? Yes.
The point is I just don't know until I know, but this anticipation drives me absolutely nuts. It's hell having to wait 3 months for the next MRI. I'm even thinking it was very bad luck to schedule an MRI on a Saturday the last time. Yes, I'm irrational enough to think that way.
I hope to god this next MRI doesn't show any subtle change in any direction but down. As crazy as this all may sound, other than for my incredible depression and fear, I physically feel okay. I just don't know what to believe or hope for. It sure doesn't make the holiday season enjoyable in the least. I hope I'm not this miserable this time next year.
I don't usually have too many side effects from the Cab usage, although every once in a while I do have a day when I feel kind of foggy and dizzy.
I have my January MRI coming up on 1/8 and I've never felt more freaked.
My October MRI results although still showing improvement (regression) overall, there was a very subtle increase of the remaining part of the tumor that's still around the carotid from 16mm in June to 19mm as of my October MRI results. So, when I met with my neurosurgeon (3 weeks after that MRI which was such an unbelievably painful period of waiting to talk to him) he threw out a lot of possibilities. He said it looked it better overall and even my endocrinologist and he together corraborated and saw no reason to sound any alarm, but I'm never even neutral in mood, forget happy.
I know that all doctors have to cover their bases and lay out all the options and possibilities and they can never promise anything. But when he mentioned the possibility of a second surgery (which he even mentioned before the first surgery) among other things, my heart just sank! Since that moment, I've been living in terror. Absolute terror. I have not had a single day of even moderate happiness since and this whole year has been unbelievably difficult for me. On top of this medical issue that will probably now be with me indefinitely regardless of what has to happen next, my maternal grandmother just died a week ago along with her best friend literally without hours of her. Triple the misery with incredible financial difficulties and stress...couldn't even go shopping for the holidays if I wanted to...i think it's safe to say that 2014 has been one of the worst years of my life and I will not be sorry to see it go. I only pray 2015 isn't worse.
I'm not crazy or anything but I've literally felt emotionally crippled since the moment I left my neurosurgeon's office back in October. I wake up in the middle of the night in panic sometimes, I still have flashbacks of how miserable i was in the hospital this last March, the holidays are virtually nonexistent to me this year and are just as depressing as they were last year. It doesn't even feel at all like December in the least. The weather, while not an important talking point, is grotesque with this relentless affinity for 68 degree+ temperatures and incredible humidity even with the rain. I walk to the train stop in the morning and wonder why, in December, the air smells like 5 day old curry powder and body odor when it should be smelling crisp and smokey like Christmas. Yes, the air in CA actually smells like a rotting spice and B-O.
I can't even crack half a smile these days without having this tumor in the back of my mind, figuratively AND literally. I know there are probably people who have it much worse off than I do, but I'm really scared about the possibility of having to go back into the hospital. It's like having this ordeal all over again from the beginning, the only difference being that it would be done preventitively and not under urgent conditions like it was back in March.
I just started working for a new company back in September and the thought of having to complicate my life once again with a disability claim for a month not only freaks me out but makes me so angry just to think about it. Again, it's not a definite but it's always a possibility.
Heck I even talk to those damn pills when I swallow them praying that they continue to shrink the remaining tumor, but that's hardly scientifically sane.
Is it possible that portion of the tumor may yet show a decrease in size again come January 8th's MRI? Yes.
Is it possible the last 4 months of mental torture freaking out about what's going on in my head has really been way over-thought? Absolutely.
Is it possible the MRI from October wasn't necessarily 100% accurate and may interpret a shift of the remaining mass as an increase when their really wasn't much of one to speak of? Sure.
Is it possible all my fears could be realized, that the tumor will have again shown a continuing trend of subtle increase from 19mm to ? Yes.
The point is I just don't know until I know, but this anticipation drives me absolutely nuts. It's hell having to wait 3 months for the next MRI. I'm even thinking it was very bad luck to schedule an MRI on a Saturday the last time. Yes, I'm irrational enough to think that way.
I hope to god this next MRI doesn't show any subtle change in any direction but down. As crazy as this all may sound, other than for my incredible depression and fear, I physically feel okay. I just don't know what to believe or hope for. It sure doesn't make the holiday season enjoyable in the least. I hope I'm not this miserable this time next year.
I am not going.
I have PTSD and looking at the traditional route, I have read so much about people who have normal prolactin levels but a tumor is found. Or people who have super high prolactin levels and no tumor is found.
Then there's the medicine. And people are saying that sometimes it works, sometimes not. Sometimes it reduces prolactin levels but doesn't stop the tumor growth. Sometimes there are awful side effects.
We have had so many experiences where Western medicine has let us down so I am going the acupuncture route for this. I will speak with an endocrinologist too, but I'm going to tell him the MRI is a no go and ask what to do from here.
We may try the meds and see how I feel but I am definitely doing the acupuncture.
I am on a number of meds that are known to cause high prolactin and with the PTSD that can raise it as well and mine is considered "moderately high" so I imagine that's what's making it test high.
I'll keep you posted. Please let us know how your test went and realize there are other avenues and you are allowed to say what you will/won't do.
I apologize that I did not update this thread after my last MRI appointment. The news was good, thank god. The tumor has shown more shrinkage to the point that my neurosurgeon spaced out my MRIs and appointments with him to every 6 months instead of every 3. Let's hope the trend continues. I will be having another MRI in July sometime so I hope it will stay the course. I can only assume that my neurosurgeon wanted my MRI to look a certain way before he was confident that he could space out follow-ups. I guess this has happened, so the surgery and cab are doing their jobs.
So far, the cab is a good medicine. I still talk to it each and every time I take it twice a week. I do occasionally have some light fogginess that isn't quite a headache. But I attribute much of this to just general stress and tiredness. My headaches are nothing like they used to be with that terrible pounding and pulsating on my left side. That said, if I even get the slightest little twinge, I freak out. I guess it's just something I have to live with and eventually get over.
Again, I apologize I didn't update you all....