I have some resources in the health pages which are to the right there.
That is a larger tumor - do you know what type of tumor? Some tumors respond to medications so knowing the type is essential so you would have a chance to reduce the size if possible. If it is a non-secreter, then the only option is surgery right now.
You should get copies of your labs and MRIs and reports. First - you should know everything (you may not understand everything yet) and second so you can send around to get surgical opinions.
I don't know where you are located - but in general, you want a very very very very experienced surgeon especially with a larger tumor and you want the tumor to have a lot of experience with larger tumors. You want a surgeon to do endoscopic no microscopic surgery (better view). Often an ENT will work with a surgeon too which is nice - as they go through the nose. You want a pituitary center so you get a neuro-endo. You need to know the location of the tumor - if it has moved up around the optic nerves (optic chasm) or down into the cavernous sinus. Parts of those tumors would be inoperable. Other parts that require skill and experience are tumors wrapped around carotids and around the pituitary stalk. You want the chance to retain as much hormonal function as possible with the least risk to your eyes and stroke. You may need radiation after the surgery. You should get lifetime monitoring.
Not having any details other than size - it is hard to comment further - but I hope this helped. Feel free to ask more questions after you look at the resources and read other posts.
Oh Duh... you are in OK... I am not awake... If you don't have a good local source, you can try the NIH (clinicaltrials.gov) where you can get treatment for free with top surgeons. I traveled for my surgeon - it really makes a difference in outcome for a top surgeon.
Thanks for your reply. It is a not-secreter or non functional (as the endocrinologist referred to it). It has invaded the cavernous sinus. The endocrinologist metioned Drs Ed Law (Brigham and Womens Hospital) who reportedly has done approx 5,000 surgeries and Brook Swearingen at Mass General as potential surgeons. My research has indicated, Mayo Clinic, Mass General, John Hopkins and Cleveland clinic as potential treatment centers, but i am struggling with how best to next proceed. Do you contact the hospital the doctor, email or phone, or schedlule visit. traveling to a number of places would be terribly expensive and i had hoped to narrow down the choices. Any comments or advise is appreciated.
Dr Laws is, to my knowledge - the most experienced surgeon in the US. You can simply call his office and they will take it from there. The same goes for all the other offices - they are pretty used to out of town patients (at least most of them) and some of them may offer low cost housing. There are also some angel flights too that you can look into that may help you out - but it gets iffy for pituitary. I know they used to offer it but then it changed to you had to have cancer.
If cost is a real issue - NIH is a good option - they have top surgeons there and treatment is often low cost. It is in Maryland. If you qualify, they may or may not pay for travel.
I will send you a PM with some links - there are also links in the health pages with help.
Hello RodOk, I am in Fort Smith and had surgery on July 20. My Endo wanted me to go to Little Rock but they were not in network with my insurance. I started checking my local Drs and found one that does a lot of them. He did a great job and I did not have to travel. I am sure Tulsa would have someone. Good luck and keep us posted. Ask all the questions you want. You need to know all you can going into this. And keep a copy of everything that is done. I had to change Endos in the middle of it all.
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