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 I'm approaching the 3 month MRI mark on 6/24 following transphenoidal removal/resection of 80% of a 7cm macroprolactinoma back on 3/24. Surgery was 12 hours and I spent 8 days in the hospital and have been on 0.5mg of Cabergoline twice a week ever since. My original prolactin levels were around 2000 before surgery, down to around 1000 immediately after surgery, and after being on cabergoline for nearly two months (as of around 5/15) following surgery, my prolactin level was down to about 23 (I imagine it may be even less now).
I called into my neurosurgeon's office today just to ask about taking extra strength Excedrin to make sure it was okay as I had a very minor headache. The last time I met with him, I had to be the thinker of bad news and bring up the possibility of him having to go back in and try to remove the remaining amount of the tumor that was still around the carotid (he didn't really volunteer such a topic in our discussion but I can't seem to stop obsessing over incredible depression and fear over this). He is always incredibly friendly, is extremely knowledgeable and knows what he's doing, but I still get so freaked when I talk with him for fear of what if, what then, etc.! He did mention the remote possibility of having to go back in to get the rest if it isn't shrinking, but he also expressed a lot of confidence about more likely than not that the 0.5mg of Cab twice a week is doing it's job. Problem is he won't know for sure until the MRI results. Hence my impending feeling of doom.
My neurosurgeon has been really happy with everything that's been going on with my recovery but....I'm just terrified of this 3 month MRI and what it might NOT show (significant shrinkage of the tumor backing off the carotid artery). It's all I've been thinking about since I last met with him back on the 15th of May. That and the apparent nasal adhesions my ENT doctor claims are now there from surgery which also thrill me but are not causing me any major breathing problems through my nose. Forgive me if, compared to a prolactinoma, I don't give a shit about some minor scarring in my nose right now. My surgeon left that portion of the tumor and I imagine for good reason because the carotid artery is such a dangerous place and he wanted to be conservative by using the cabergoline to help get rid of the rest and he does have lots of success with it. He probably also felt that I was under general anaesthesia for such a long time and he was tired himself so he didn't want to risk keeping me under for so much longer if he figured medicine could help the remaining portion of the tumor shrink down.
My horrible fear is that the MRI will not show any shrinkage around the carotid artery.
I also have an added major concern with my job. I've been on disability since I went into the hospital. I also hate where I'm working and desperately want to find another job. I've been running myself mentally ragged applying to jobs since one week out of surgery and although I have some potential logs on the fire, nothing has come to fruition. Add to that the fact that before we even discovered I had a pituitary tumor, my manager was putting me on probation. It was around this time that I practically went legally blind from the pressure of the tumor pushing on the optic nerve as well as on the hypothalamus so my personality was going haywire.
Keep in mind that I LOVE to work and I'm an extremely hard worker in general. I've NEVER had such an experience at a job so this just killed whatever self esteem I had left. Now I'm almost certain they'll fire me the second I'm back at work and off disability unless of course my doctor determines he needs to go back in, in which case my disability would be extended and I would have to go through this awful ordeal all over again with all new medical expenses. I've barely started paying off the ones I have, and that's WITH insurance and fighting with insurance companies to get adjustments over weeks at a time.
Add to this now a THIRD possible level of complication. Because my 3 month MRI is so close to the time I'm technically supposed to go back to work, if I WERE to find another job by then and let's say I'd already started working at the new place....SURPRISE...MRI shows.my tumor isn't shrinking and....gotta go back in. Bye bye new job and here we go again.
I've just felt so horrible mentally since this all happened to me. I think 2014 will go down in the history books as probably the worst year of my life so far. I'm not trying to feel sorry for myself, as I don't want to feel like this, but I've had nothing but bad news since this occurred with the exception of coming through the surgery okay. That I am thankful for and I'm happy to be alive and have air in my lungs. I know we have to be grateful for that. But isn't there more to life than just survival? I so want good news and I do everything in my power to make it happen, but it's so hard. Granted, it may not be so negative at the end of the road, but there's SO much uncertainty and I'm just so scared about everything. But I also understand that many of you are going through very similar circumstances. I just hope to God there's more light at the end of this tunnel than I want to imagine there is. I guess I just needed someone to talk to, even if it's a forum page.
I called into my neurosurgeon's office today just to ask about taking extra strength Excedrin to make sure it was okay as I had a very minor headache. The last time I met with him, I had to be the thinker of bad news and bring up the possibility of him having to go back in and try to remove the remaining amount of the tumor that was still around the carotid (he didn't really volunteer such a topic in our discussion but I can't seem to stop obsessing over incredible depression and fear over this). He is always incredibly friendly, is extremely knowledgeable and knows what he's doing, but I still get so freaked when I talk with him for fear of what if, what then, etc.! He did mention the remote possibility of having to go back in to get the rest if it isn't shrinking, but he also expressed a lot of confidence about more likely than not that the 0.5mg of Cab twice a week is doing it's job. Problem is he won't know for sure until the MRI results. Hence my impending feeling of doom.
My neurosurgeon has been really happy with everything that's been going on with my recovery but....I'm just terrified of this 3 month MRI and what it might NOT show (significant shrinkage of the tumor backing off the carotid artery). It's all I've been thinking about since I last met with him back on the 15th of May. That and the apparent nasal adhesions my ENT doctor claims are now there from surgery which also thrill me but are not causing me any major breathing problems through my nose. Forgive me if, compared to a prolactinoma, I don't give a shit about some minor scarring in my nose right now. My surgeon left that portion of the tumor and I imagine for good reason because the carotid artery is such a dangerous place and he wanted to be conservative by using the cabergoline to help get rid of the rest and he does have lots of success with it. He probably also felt that I was under general anaesthesia for such a long time and he was tired himself so he didn't want to risk keeping me under for so much longer if he figured medicine could help the remaining portion of the tumor shrink down.
My horrible fear is that the MRI will not show any shrinkage around the carotid artery.
I also have an added major concern with my job. I've been on disability since I went into the hospital. I also hate where I'm working and desperately want to find another job. I've been running myself mentally ragged applying to jobs since one week out of surgery and although I have some potential logs on the fire, nothing has come to fruition. Add to that the fact that before we even discovered I had a pituitary tumor, my manager was putting me on probation. It was around this time that I practically went legally blind from the pressure of the tumor pushing on the optic nerve as well as on the hypothalamus so my personality was going haywire.
Keep in mind that I LOVE to work and I'm an extremely hard worker in general. I've NEVER had such an experience at a job so this just killed whatever self esteem I had left. Now I'm almost certain they'll fire me the second I'm back at work and off disability unless of course my doctor determines he needs to go back in, in which case my disability would be extended and I would have to go through this awful ordeal all over again with all new medical expenses. I've barely started paying off the ones I have, and that's WITH insurance and fighting with insurance companies to get adjustments over weeks at a time.
Add to this now a THIRD possible level of complication. Because my 3 month MRI is so close to the time I'm technically supposed to go back to work, if I WERE to find another job by then and let's say I'd already started working at the new place....SURPRISE...MRI shows.my tumor isn't shrinking and....gotta go back in. Bye bye new job and here we go again.
I've just felt so horrible mentally since this all happened to me. I think 2014 will go down in the history books as probably the worst year of my life so far. I'm not trying to feel sorry for myself, as I don't want to feel like this, but I've had nothing but bad news since this occurred with the exception of coming through the surgery okay. That I am thankful for and I'm happy to be alive and have air in my lungs. I know we have to be grateful for that. But isn't there more to life than just survival? I so want good news and I do everything in my power to make it happen, but it's so hard. Granted, it may not be so negative at the end of the road, but there's SO much uncertainty and I'm just so scared about everything. But I also understand that many of you are going through very similar circumstances. I just hope to God there's more light at the end of this tunnel than I want to imagine there is. I guess I just needed someone to talk to, even if it's a forum page.
Try to focus on just today and it's challenges. People look at us and say, within themselves, "he/she doesn't look sick".
But, they don't know. I just had a friend have an adenoma removal. It was discovered due to some thyroid problems he was having. His personality was all over the place (and it will be) but you must think on a "cosmic" scale.
Realize that people operate from their understanding (or, more often) lack thereof. I've passed through a number of the things you've described and there IS a way through it all.
My prolactin went from 163 to 7 and the tumor is shrinking, the margin of the cavernous sinus is clear and is is off of the internal carotid artery.
I feel certain that if your levels are going down the tumor is shrinking. think positive!!
I drove myself to the test and cried a little on the way. It's OK to be scared.
The mood swings go with the territory and if you lose your job it WILL turn out for the best. Stress does not go well with prolactinomas!!
Good luck and I always view the cab headache as tumor cell death!!
Try to relax. The medication adheres to the tumor receptors and it does work. Just have to give things time and this is practically no time yet...at all.
Mood swings and crushing depression are a part of all of this.
I can recommend testorsterone injections...that will get you over the hump.
The remaining part of the tumor has shrunk considerably so my doctor was very happy about that. He told me he could see the optic nerves clearly for the first time and that it's receding considerably away from the carotid as well. That was almost like a 16 ton weight off my shoulders because I've literally been on pins on needles about this since the middle of May. I don't even want to think about what could have happened if the tumor wasn't pulling away from the carotid or worse, what would have happened had I not started having vision problems to discover it before it was too late.
I still have the situation with my work, but health is #1 and from what my doctor has told me, it's moving in the right direction. So, the Cabergoline is doing it's job which is really good news. I'm staying on the same dosage (0.5MG twice a week). With the exception of some occasional light nausea, the symptoms are pretty controllable. I think my doctor wants to see the remaining part of the tumor shrink to the point where it almost can't be detected by the MRI. At least I'm out of mortal danger and I won't have to go through another surgery with a long hospital stay. That was a real fear of mine.
I'll need another MRI around 6 months and I'm hoping that will be more of a routine one in terms of continued shrinkage. This 3 month one was just much more stressful because I had no idea what was going on in there from the time I came back from the hospital.
Tibetian Tiger, you're definitely right about people operating from a lack of understanding and they do tend to freak out about things. Unfortunately, I was not an exception to that. However, I'll hope to continue improving.....prognosis seems good.
It's a personality type. In their mind, if they tag your vulnerabilities, it somehow makes them feel as though they themselves cannot become victims of illness, disability, or shame.
The operative word here is shame. They understand shame from a number of perspectives and cannot live it out in their own lives...thus, they live out in yours.
This principle closely borders upon self delusion and usually plays out in their fantasies of their assumed omnipotence. You are feeling the effects of their narcissism when they comment or behave toward you with indifference. They are dry wells and are worthless to anyone else.
The best thing that any of us can do is seek out those with the capacity and willingness to listen and offer comfort, compassion and support. We have to give that ourselves as well.
Just because a person looks healthy, does not mean they are.
I would rather have a medical illness...or a mental illness...than a moral illness any day. A moral illness is oftentimes a choice...a choice of character...and it's not one I choose.
I'm glad you got a good report. In the vast majority of instances, the tumor does react to the medication...and will continue to do so.