Aa
Bad news :(
Unfortunately, it appears I need radiation. There is evidence of the tumor regrowing and compressing the optic nerve, as well as possibly spreading along the nerve sheath. The problem is that the location is very dangerous and not many RO's have experience there. I found one who claims he has more than most (and my NS referred me to him, saying he wouldn't trust anyone else) but even if I go with him, the risks of complications are significant. That darned pituitary is in the line of fire, as is the optic nerve. I have risks to vision that ranges from mild to severe impairment in one or both eyes. There are also considerable risk for hormonal and endocrine problems, ranging from mild to severe; shortterm to longterm. Very reassuring. But he told me not to wait to do it.
I am looking in to getting second opinions, but I feel that radiation is inevitable given the situation. I have to consult at local hospitals that I know are not qualified just to try to get insurance to cover a more qualified out of network RO. I have to be able to prove to insurance that they are not as experienced. I am also trying to consult at another large hospital in NYC in hopes of finding someone other than the guy I saw. I don't doubt his credentials or experience, but man is his bedside manner terrible.
So I ask for your thoughts and prayers. I also wanted to ask about pituitary problems, since so many of you have them. Who would monitor my levels? I ask because I am scheduled for my annual gyn exam at the end of March. I am wondering if I should call and have him squeeze me in before I start all of this so that I can discuss with him. Would he monitor my hormones and such? Would it be my primary? I didn't think to ask these question at my consultation, but will bring it up at the next one.
I am sick with anxiety and having trouble processing all of this. Also overwhelmed with trying to find someone who can treat me.
I am looking in to getting second opinions, but I feel that radiation is inevitable given the situation. I have to consult at local hospitals that I know are not qualified just to try to get insurance to cover a more qualified out of network RO. I have to be able to prove to insurance that they are not as experienced. I am also trying to consult at another large hospital in NYC in hopes of finding someone other than the guy I saw. I don't doubt his credentials or experience, but man is his bedside manner terrible.
So I ask for your thoughts and prayers. I also wanted to ask about pituitary problems, since so many of you have them. Who would monitor my levels? I ask because I am scheduled for my annual gyn exam at the end of March. I am wondering if I should call and have him squeeze me in before I start all of this so that I can discuss with him. Would he monitor my hormones and such? Would it be my primary? I didn't think to ask these question at my consultation, but will bring it up at the next one.
I am sick with anxiety and having trouble processing all of this. Also overwhelmed with trying to find someone who can treat me.
Thanks! Yeah, even with me now, they are pushing gamma (but I won't go for that!) as they usually push what they have, sadly not always what is best for the patient.
4MyKids - It always pays to research. While family means well - unless the hubster knows a lot about radiation and goes to all the appointments and understands the medspeak... he has to let you make the right decision for your body. There is never no one perfect decision anyway so he has to understand that it is a matter of mitigating risk and coming out with what you hope is the best long term solution.
It is never ever easy!
4MyKids - It always pays to research. While family means well - unless the hubster knows a lot about radiation and goes to all the appointments and understands the medspeak... he has to let you make the right decision for your body. There is never no one perfect decision anyway so he has to understand that it is a matter of mitigating risk and coming out with what you hope is the best long term solution.
It is never ever easy!
I consulted 5 RO's in total. So far, i haven't had to pay more than the copay. I was expecting grief. Before going to more opinions, I called my insurance and kept asking bluntly. At first the person on the phone will try to talk circles, but when pressed they told me that as long as it was in network, i could consult as many as I would like, although they recommended up to 3.
When I was consulting for surgery, I consulted 3. No problems with coverage there either.
I agree with Rumpled, proton really does seem to the safest option. In my discussions with others, it has really been highlighted that it is hard to get because of limited availability and cost. If it is being offered to you, you are lucky. However, for peace of mind, I would get another opinion. The most important thing I have learned in this journey is that you should always learn about ALL of your options because they are not always presented to you.
Looking back at this thread, I see the end of my story is missing. I consulted 5 RO's. The first 2 said to do IMRT immediately. The 3rd and 4th said IMRT as soon as there's definite evidence of growth. I thought to ask the 3rd and 4th about proton at the end of the consults. Only after I asked about proton did they tell me that it could be a good option for me. (It was evident that they knew of it, but not selling it would not have told me to seek it). The 5th RO was for proton. He made it very clear that proton is the safest option for me. My research supports this. It is as equally effective as IMRT with less potential long term damage. So it's at least as good, likely better.
SRS is not an option for me because it would destroy my optic nerve.
When I was consulting for surgery, I consulted 3. No problems with coverage there either.
I agree with Rumpled, proton really does seem to the safest option. In my discussions with others, it has really been highlighted that it is hard to get because of limited availability and cost. If it is being offered to you, you are lucky. However, for peace of mind, I would get another opinion. The most important thing I have learned in this journey is that you should always learn about ALL of your options because they are not always presented to you.
Looking back at this thread, I see the end of my story is missing. I consulted 5 RO's. The first 2 said to do IMRT immediately. The 3rd and 4th said IMRT as soon as there's definite evidence of growth. I thought to ask the 3rd and 4th about proton at the end of the consults. Only after I asked about proton did they tell me that it could be a good option for me. (It was evident that they knew of it, but not selling it would not have told me to seek it). The 5th RO was for proton. He made it very clear that proton is the safest option for me. My research supports this. It is as equally effective as IMRT with less potential long term damage. So it's at least as good, likely better.
SRS is not an option for me because it would destroy my optic nerve.
Yeah, those non-secreters tend to get larger and the mass effect symptoms tend to do things. They wrap around and only parts can be surgically removed.
The cavernous sinus (sinus just refers to a cavity I know I lot of people think only of the sinuses in your nose) is full of nerves and blood vessels so no one can mess about in there. I am actually surprised you did not have headaches besides the vision issues. Nothing starves those tumors - they can be quite aggressive and so you will have to stay on it forever (sorry). I had a different type (actually two) and one if mine recurred immediately as well.
If you look up gamma radiation, cyber knife and proton beam and do research, proton beam is the newest (and most expensive) and if I had that option, that would be mine since it spares more of the healthy tissue. I know a lot of people who had the other types and typically later and I have to say the docs are not always to up front about issues that show up years later... which is pretty sad. Not everyone has them but... they do seem more common than what seems to be discussed so I would go for the best stuff out there.
How much of this does your husband understand?
The cavernous sinus (sinus just refers to a cavity I know I lot of people think only of the sinuses in your nose) is full of nerves and blood vessels so no one can mess about in there. I am actually surprised you did not have headaches besides the vision issues. Nothing starves those tumors - they can be quite aggressive and so you will have to stay on it forever (sorry). I had a different type (actually two) and one if mine recurred immediately as well.
If you look up gamma radiation, cyber knife and proton beam and do research, proton beam is the newest (and most expensive) and if I had that option, that would be mine since it spares more of the healthy tissue. I know a lot of people who had the other types and typically later and I have to say the docs are not always to up front about issues that show up years later... which is pretty sad. Not everyone has them but... they do seem more common than what seems to be discussed so I would go for the best stuff out there.
How much of this does your husband understand?
I feel very comfortable with my doctor but my husband and others are asking if I am goign to get a second opinion, so it has me thinking now. It was an macro that was non-secreting that they tried removing via transsphenoidal. First sign that I had was vision loss....They thought by removing it last year that it would starv the remaining tumor once they took the bulk of it out. I have no symtoms but saw it on a follow up MRI. The remaining part of the pituitary that they need to remove is in the cavernous sinus that they can not operate on surgically.
Thanks for your feed back.
Thanks for your feed back.
In general, most insurance plans will pay for a second opinion.
Proton beam therapy is the newest (and IMHO best) radiation around - and is as you said the most sparring of healthy tissue. If it was me and I had a choice between the proton beam and the stereotactic, proton beam would win hands down. It may be a bit more time, but in the long run, risk and side effects should be a lot lower.
It sounds like you have a complex case - and you can always send your records around. Some docs charge, some do for free. If you are uncomfortable, do more research, ask questions here or send out your records. What type of tumor (or is it the arachnoid only)? Was it a macro?
Proton beam therapy is the newest (and IMHO best) radiation around - and is as you said the most sparring of healthy tissue. If it was me and I had a choice between the proton beam and the stereotactic, proton beam would win hands down. It may be a bit more time, but in the long run, risk and side effects should be a lot lower.
It sounds like you have a complex case - and you can always send your records around. Some docs charge, some do for free. If you are uncomfortable, do more research, ask questions here or send out your records. What type of tumor (or is it the arachnoid only)? Was it a macro?
On getting a second opinion....is that covered by insurance. Did you have to be in person for them if they are in another state? I have a Pituitary tumor that was not fully removed after surgery last year and they have recommended me for the proton therapy 5-1/2 weeks here in IL. I also have an arcnoid cyst that they are going to target this proton beam thru to spare my healtly brain matter as much as possible but they don't have any historical data to what it will do to this cyst. I will be closely monitored with weekly CTs as I go thru my treatment. I also have an menginoma that is status quo right now and will closely monitor that over my life.
They want me to start Monday for my treatment but I am wonding if I should get a second opinion. I am also not a candidate for stereotatic radiosurgry (1-shot high dose radiation) due to the location of the optic nerve and other nerves in the area. Just wondering whom else I could get an opinion on or what was the outcome of your consulations and your final decision.
Any help would be great!
They want me to start Monday for my treatment but I am wonding if I should get a second opinion. I am also not a candidate for stereotatic radiosurgry (1-shot high dose radiation) due to the location of the optic nerve and other nerves in the area. Just wondering whom else I could get an opinion on or what was the outcome of your consulations and your final decision.
Any help would be great!
I am actually working on 6 consultations right now. I'm trying to cover all bases. One of the consultations is at a proton therapy facility. I have seen 2 doctors at 2 major NYC hospitals, with a third hospital's tumor board looking at my case as well.
My most recent consult with an opthalmalogic oncologist explained a little better why IMRT may be better than cyberknife. Like rumpled said, cyber knife is more precise, but it may be too precise for a case like mine. Since mine is spreading along the sheath and isn't a definable mass, chances are they wouldn't irradiate all of the cells. IMRT allows them to cover a broader area. Cyberknife would kill the optic nerve. There is a good chance that the optic nerve could tolerate IMRT or proton which is also fractionated.
With the current location, the consensus among all i have consulted is that craniotomy is not an option. It would definitely leave me blind in that eye. Right now it is 20/20, so that is not a risk we can take. If my vision were already lost in that eye, then I would consider it.
My most recent consult with an opthalmalogic oncologist explained a little better why IMRT may be better than cyberknife. Like rumpled said, cyber knife is more precise, but it may be too precise for a case like mine. Since mine is spreading along the sheath and isn't a definable mass, chances are they wouldn't irradiate all of the cells. IMRT allows them to cover a broader area. Cyberknife would kill the optic nerve. There is a good chance that the optic nerve could tolerate IMRT or proton which is also fractionated.
With the current location, the consensus among all i have consulted is that craniotomy is not an option. It would definitely leave me blind in that eye. Right now it is 20/20, so that is not a risk we can take. If my vision were already lost in that eye, then I would consider it.
I currently have my 3rd epidermoid brain tumor. The first 2 were on my brainstem. My newest is on my cranium. They are benign and wrapped around cranial nerves. Neurosurgeons believe they are rubbing elbows with God...and question any of them who do not want you to seek a 2nd opinion. I see a top Mayo neurosurgeon, U of MN Head of Neurosurgery and Duke Raleigh neurosurgeon. They all insist that when CRANIAL NERVES ARE VULNERABLE, THE GOOD OL' FASHIONED CRANIOTOMY IS A MUST. The optic nerves (a few of the cranial nerves are linked to vision) are too risky to goof with, with radiation, etc...I suffered severe double vision for months following my 1993 brain surgery simply from the poking and prodding of their instruments. However, the double vision was only for weeks following my 2007 surgery. I was told that if my epidermoids came back malignant and remained wrapped around any cranial nerves, a craniotomy would still be required. Please get a 2nd opinion from a updated research college or hospital. Innovation in surgical skills and tools make my 2nd brain surgery recovery so much easier!
Alas, her tumor is a meningioma, not pituitary...but it is close to the pituitary. And sadly not all pituitary tumors will react to dopamine agonists. A lot do - and that is why it is important to know the type of tumor and to try meds first! I hope yours in the cavernous sinus stays under control as that part is inoperable anyway.
I would go see a good ENT for the post nasal drip - and if you have severe headaches, make sure it is not a slow CSF leak. Rare, but can happen.
I would go see a good ENT for the post nasal drip - and if you have severe headaches, make sure it is not a slow CSF leak. Rare, but can happen.
I am a 56yr old male. I was diagnosed with a prolactin secreting Pituitary tumor approx 5yrs ago. It was discovered by accident . It is a macroadenoma .The prolactin was making my depression worse, wrapped around some major artery (carotid ?) and pushing against my optical nerve. I was prescribed cabergoline to take twice a week. Within a few weeks (it seems) it shrunk enough to pull away from my optical nerve and off the artery it was beginning to compress. And it stopped producing the prolactin. Part of it has invaded my carniforous sinus cavity but have been told its not related to my issues with post nasal drip. It is now 4 years later , I have continued to take the med and have had no further problems from it. . I encourage you to discuss the possibility of using this med in an attempt to avoid other more invasisive steps. Im told some tumors can be "debulked" to prevent furture threat to good health. Good luck to you !
Little by little it will sink in. Rightly so your focus should be on the radiation and who, where etc. The pit gland hormones can come later. The quick of it is that the hormones are replaceable.
Horselip
Horselip
ok. good. thanks. I'll let you all know what i learn and I am sure I will have plenty more questions.
If is was surgery, you would have needed a skull base surgeon but as you are doing radiation, you need an interventional radiologist associated with a pituitary center. I would go there because as long as they can do the sella area, they can take care of the other areas - because they are already used to taking care of the optic nerve, the pituitary and the carotids etc. so expanding out to take care of the meningioma should not be an issue.
I know MT Sinai has a center - last I heard, not really sure about Sloan to be honest.
It is overwhelming right now - but when you have questions, feel free... it is a lot to take in all at once.
I know MT Sinai has a center - last I heard, not really sure about Sloan to be honest.
It is overwhelming right now - but when you have questions, feel free... it is a lot to take in all at once.
OK... so horsey's generous details sailed way over my head... but I am walking away with the fact that at my next consult, I will ask them specifically if I should see a neuro-endo, and if so when. I'd look in to everything you wrote, but I am SOOO way over my head in research I can't even begin to go there yet. But, I will definitely refer back to it once the time comes, so thank you very much :)
In hunting for other docs to consult, I am now looking for ones who specialize in meningioma and pituitary... because at least then I can assume they would know how to handle the area? I don't know. It is so hard to find a name to call when there are hundreds in our area, and none advertise a specific part of the brain they deal with. I have a name a Mt. Sinai that I hope to hear back from tomorrow to see if it would be worth consulting her, and am still waiting on a name from Memorial Sloan Kettering. Both are large hospitals, so I am assuming they have pituitary centers.
In hunting for other docs to consult, I am now looking for ones who specialize in meningioma and pituitary... because at least then I can assume they would know how to handle the area? I don't know. It is so hard to find a name to call when there are hundreds in our area, and none advertise a specific part of the brain they deal with. I have a name a Mt. Sinai that I hope to hear back from tomorrow to see if it would be worth consulting her, and am still waiting on a name from Memorial Sloan Kettering. Both are large hospitals, so I am assuming they have pituitary centers.
I am glad that they are already thinking of your optic nerve! I hope the insurance company is smart about the whole radiation thing. Horsey did a great summary. Let us know if you have any other questions...
Hey there-
So sorry to hear that you will need radiation. I don't know enough to advise, sorry. However I do know what it is like to lose function of my pituitary gland.
In short you will need a good neuro endocrinologist who will measure your pituitary labs and talk with you about your symptoms. Based on this they will prescribe and recommend what hormones would benefit you and help you to feel the best that you can.
It is very possible that you have shortfalls already, because of your surgery.
Typically they will watch your:
TSH and thyroid
Prolactin
FSH, LH and corresponding estrogen, testosterone and progesterone levels
ACTH and corresponding cortisol
Growth hormone and IGF-1
Antidiuretic hormone/ Vasopressin if you get Diabetes Insipididus
Not all patients will shortages in all hormones so it should be very individualized care and it takes time to get all of the hormones just right.
I've found that taking the hormones helps a lot but it is just not the same as having a functioning pituitary gland. I think that the hardest of all of the hormones is cortisol.
Once you stop making ACTH then you have to take hydrocortisone (or another steroid). Your body is not able to make small adjustments. I find that I am either "on" or "off". At night, I do not take any hydrocortisone h/c.as it causes me to have insomnia. Yet if say some little stressful thing happens at night my body does not crank out any h/c and I overreact or can't cope.
A neuroendo is an endocrinologist who specializes in the pituitary and adrenal glands. They tend to be in larger medical centers that have a pituitary program. And they are not all "great" either. Some don't even do the thyroid properly. But there are good ones out there.
If you have a fantastic ob/gym they might be able to help you better than a bad neuroendo but you want to make sure that they are tracking the right things.
[HUG]
Horselip
So sorry to hear that you will need radiation. I don't know enough to advise, sorry. However I do know what it is like to lose function of my pituitary gland.
In short you will need a good neuro endocrinologist who will measure your pituitary labs and talk with you about your symptoms. Based on this they will prescribe and recommend what hormones would benefit you and help you to feel the best that you can.
It is very possible that you have shortfalls already, because of your surgery.
Typically they will watch your:
TSH and thyroid
Prolactin
FSH, LH and corresponding estrogen, testosterone and progesterone levels
ACTH and corresponding cortisol
Growth hormone and IGF-1
Antidiuretic hormone/ Vasopressin if you get Diabetes Insipididus
Not all patients will shortages in all hormones so it should be very individualized care and it takes time to get all of the hormones just right.
I've found that taking the hormones helps a lot but it is just not the same as having a functioning pituitary gland. I think that the hardest of all of the hormones is cortisol.
Once you stop making ACTH then you have to take hydrocortisone (or another steroid). Your body is not able to make small adjustments. I find that I am either "on" or "off". At night, I do not take any hydrocortisone h/c.as it causes me to have insomnia. Yet if say some little stressful thing happens at night my body does not crank out any h/c and I overreact or can't cope.
A neuroendo is an endocrinologist who specializes in the pituitary and adrenal glands. They tend to be in larger medical centers that have a pituitary program. And they are not all "great" either. Some don't even do the thyroid properly. But there are good ones out there.
If you have a fantastic ob/gym they might be able to help you better than a bad neuroendo but you want to make sure that they are tracking the right things.
[HUG]
Horselip
this RO wants to do IMRT.
I think you know where my surgery was. If you go to their GK website, you see my NS's picture all over it since he helped establish the GK center there. He specifically told me NOT to go there. I am going there for a consult so that I can then turn around and tell insurance that that facility is not equipped to handle me and that they need to pay someone who is out of network.
I was told that GK and CK are not options because the dosage of radiation required to kill the meningioma is higher than what the optic nerve can tolerate.
I think you know where my surgery was. If you go to their GK website, you see my NS's picture all over it since he helped establish the GK center there. He specifically told me NOT to go there. I am going there for a consult so that I can then turn around and tell insurance that that facility is not equipped to handle me and that they need to pay someone who is out of network.
I was told that GK and CK are not options because the dosage of radiation required to kill the meningioma is higher than what the optic nerve can tolerate.
I am so sorry about the radiation!
Are they pushing you into one form or another? When you talk to them, all forms have radiation leakage so with it being so close to the optic nerve, be sure to ask about the skill of the facility near the optic nerve and pituitary, what to expect for side effects etc.
Gamma - one shot, higher dose, convenient for the one dose but... high dose at once may mean later side effects.
Cyber knife - many smaller doses - so you have to get a mask made - slightly more accurate from my research, but you should do yours...
Proton beam - the newest, most expensive but the most sparring of healthy tissue which means the potential for necrosis and other nasty things should not happen. Only a few facilities in the US have it but it is the most state of the art.
You will need to go to a facility that has a pituitary center attached - and your neuro-endo should co-ordinate with them. Yeah some of them are ... not so great at talking to patients.
I am not a great fan at the natural cure at this point. I wish I was but the things I tried before never worked and well... you would lose your eyesight and hormone function.
Are they pushing you into one form or another? When you talk to them, all forms have radiation leakage so with it being so close to the optic nerve, be sure to ask about the skill of the facility near the optic nerve and pituitary, what to expect for side effects etc.
Gamma - one shot, higher dose, convenient for the one dose but... high dose at once may mean later side effects.
Cyber knife - many smaller doses - so you have to get a mask made - slightly more accurate from my research, but you should do yours...
Proton beam - the newest, most expensive but the most sparring of healthy tissue which means the potential for necrosis and other nasty things should not happen. Only a few facilities in the US have it but it is the most state of the art.
You will need to go to a facility that has a pituitary center attached - and your neuro-endo should co-ordinate with them. Yeah some of them are ... not so great at talking to patients.
I am not a great fan at the natural cure at this point. I wish I was but the things I tried before never worked and well... you would lose your eyesight and hormone function.
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