Pituitary Tumor Support Group

I just had my 2nd resection op in a year as my tumor had completely regrown. My surgeon said that it looked as if no one had ever been in there to do the surgery before as my body had completely regenerated everything as it had been, tumor included. I am now looking at having to have radiation in the next few months if it starts growing again, which my surgeon seems to think is a major possibility. I am so incredibly scared of radiation that I can barely stand to think of it, much less consider the possibility. This 2nd surgery is kicking my butt so much more than the 1st one. It has been 13 days since surgery and I am still heavily reliant on pain meds and have no energy whatsoever. I am 24 years old and led a very active life until the tumor became a problem. Now I feel like an old woman who can't take care of myself. I don't have kids but I do have 6 dogs and a cat that do not understand why we are not running around and playing anymore. I am starting to feel like I will never have a life outside of this tumor! All of my pto for work last year was spent on drs visits and surgery. I fear that I will never make it thru college as every time I go back my health throws another curve ball at me... Where does it end and how do I find the strength to get a daily routine again?!?!?! I am soooo tired all the time. They have changed my steroids and added new meds and still too tired to even care for my pets. OMG this is a pity party and I am sorry but I just don't know where to turn anymore....

Hi Confuzzles,

Vent away that's what we are all here for! I feel like everytime I post something it is negative & sounds like I'm feeling sorry for myself but I guess we are all scared and this whole thing is such a big unknown - surgery or not, will it grow or not, will it reoccur or not, will they damage or remove the gland or maybe it will just stop functioning. Will I have any complications what meds will I be on and how will I feel after surgery and so on...........?????

I promised myself when I got up this morning that I would try to find something positive in all of this and although I can't seem to find anything at all positive I'm trying to focus on how much worse off some other people are.

Anyway I've waffled on and got off the point. What I'm trying to say is this is all really awful and I really can understand how scared and frustrated you are feeling. I can't offer a solution but like everyone else on this site am here to listen X

Vent away kid. You have every right. Two of those surgeries would kill me. So you are far more courageous than I. With that type of courage you'll make it through college and be a stronger more compassionate human for it. Sending you good thoughts. Anyone who loves animals that much deserves lots of good thoughts.

Take care

Maigrey

Let it all out confuzzles. I am sorry to hear you think you might need radiation. But give it a little time, you pituitary has been under alot of stress in the last year, it just might need more time to heal this time. I will be praying for you.

I cannot imagine how disappointed and devasting it must be to go through not just one resection, but 2 and to be told to expect this thing to grow back AGAIN! When I woke 20 days ago from my first resection, I was completely devastated to learn they did not get the entire tumour. I went to a very dark place for 2 whole days. Going in, I expected nothing less than 'get this thing out' and then life back to normal as I once knew it. Well WAKE UP call for me. This is a big huge learning process for me--is what I'm finding out. My life will never be the same again--not because of just the tumour and the physical stuff--but because I had this experience and because of that, I am changed. This is going to be a life long disease management process--for all of us with pit tumours.

Confuzzles I think you are doing yourself a great justice by expressing your feelings and letting it out. Better out than in. Getting it out there instead of keeping it to yourself, allows you to see things more clearly AND to be heard/validated and supported by others--all so important.

I think it is very normal from what I've learned from my own experience, from reading and from talking with others--feeling emotional is all a part of the recovery. I've also heard that depression is also very common among survivors of brain tumours and pit tumors alike. Something to be aware of.