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Radiation or removal of entire pituitary decision

Mar 07, 2011 - 11 comments
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decisions

,

radiation

,

pituitary



Today is my 5 year anniversary for removal of my adrenal glands. It has been an up and down journey.

Recently, I have seen a doctor about my elevated ACTH and my possible Nelson's syndrome. There is also a small possibility that there could be an ectopic (carcinoid) source as well. I have been asking for tests but it has been slow much to my frustration but I finally found a doctor that understood so he has ordered scans to look for the ectopic sources first and then after the results come back, the decision has to be made.

If I have just radiation, they will have to radiate widely since the area is not well defined. If they do surgery first, then I may still have to have radiation after the surgery but it should be less since the area will be defined.

I have been avoiding radiation to use as a last resort and the removal of the entire pituitary is a drastic move so neither of these options were what I expected or wanted. However, these seem to be the only options open to me per the doctor once ectopic is ruled out.

It is a lot to think about. I still have a PET scan and a CT to do before the decision has to be made.

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by enzymelover, Mar 08, 2011
Oh dear, I'm so sorry you are faced with this decision. Would they really want to remove the entire pituitary? I think I would choose surgery over radiation (with the most excellent surgeon of course), but not if they insist on removing the whole gland.
I hope you have enough time to think this through and get all the info you can, to feel you made the right decision, whatever it turns out to be.
You say "possible" Nelson's syndrome. Will the scans be able to confirm this?
I hope the tests will make your decision easier, and I will pray for the best possible outcome for you.

(((((((((((((((((((((((((((((((HUG)))))))))))))))))))))))))))))

Judy

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by rumpled, Mar 10, 2011
Hi Judy - the scans are not showing what is up there since I had hyperplasia and it does not show up on the scans. So he will only be able to see what is up there with the surgery. I did find an excellent surgeon though.
Thanks for the hug.
Jennifer

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by rumpled, Mar 29, 2011
I got my CT report back today...
"Findings:
Axial Sections through the chest were obtained after the IV administration of contrast.
There are surgical clips adjacent to the thyroid bed. Thyroid tissue is not definitively identified [hope so, it was removed].
Heart size is normal. There is no significant mediastinal or hilar adenopathy. There is no significant axillary adenopathy.
There is no significant pleural effusion.
There is no lung consolidation. No lung mass is identified. There is a non-specific ill-defined density in the left upper lobe best seen on image 16 measuring 13mm.
Limited evaluation of the upper abdomen demonstrates calcification/surgical clip along the right hemidiaphragm near the IVC which is non-specific. This may be related to prior adrenal surgery. There is no adrenal gland identified [finally!].

Impression:
Non-specific ill defined opacity in the left upper lobe."

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by rumpled, Apr 04, 2011
I got my PET scan report back today... skipping all the radiation stuff they gave me.

"Skull base/neck: there are bilateral shotty level II cervical lymph nodes measuring up to 1cm, demonstrating mild metabolic activity (SUV max 3.0) favoring a benign process. No dominant mass or bulky lymphadenodopathy is identified.

Chest:There are no abnormal hypermetabolic foci. The minimal patchy lung density in the anterior aspect of the left upper lobe seen on the recent CT scan shows no metabolic activity and is consistent with a benign finding, probably area of parenchymal scarring. No lung consolidation or pleural effusion is seen. There is no evidence of hilar or mediastinal lymphadenopathy. "

Abdomen and Skeleton are normal.
The conclusion is all is normal. No evidence of metabolic process.

I still wonder though - if it "favors a benign process" is that for sure - or is that iffy? I still have to see if they are going to find out what the lung thing is (I never smoked, and never had any lung issues except a few cases of flu). Ideas? Any one else had this?

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by rumpled, May 10, 2011
Well, the decision came back as radiation.

I am not thrilled with this decision as they are going to have to radiate widely as there is no target. More radiation increases the chances of side effects. Plus there is no guarantee it will even hit the areas needed.

There are three types of radiation treatments - gamma knife, cyber knife and proton beam. All have pros and cons. Have to consider accuracy, number of treatments, cost, where centers are located and if they have experience with the pituitary (there is a certain amount of radiation leakage and in this area where the optic nerve and carotid and other vital things are located, you want to make sure certain areas are not hit).



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by upbeat63333, Jun 05, 2011
Have you started your radiation treatments yet? Just wondering how you are doing. You seem to give so many other people support, I hope you have a good support system set up for yourself too. Hope all is well.

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by sugarsmommie, Jan 11, 2012
Oh wow...just read all these posts...it's been a LONG time since I messaged you. Been so busy haven't found time to get on or just too plain tired to get to the computer. You have had a LOT going on. I will be thinking of you and remembering you in my thoughts and prayers. I have had a lot take place too but won't burden you with that. I just wanted you to know that i'm thinking of you and have gone through the Gamma Knife Treatment in St Louis for the residual pit tumor wrapped around the internal carotid. I am due to go back up next month for a recheck with the neuro and radiation oncologist. When you have a few moments email me & let me know how you are doing. I'll be thinking of you until then. HUGE HUGS!!
sugarsmommie-Cheryl

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by Nance31456, Sep 30, 2013
Wow!  I never knew anything about any of these problems people could have just a few weeks ago. I have learned a large amount from you already. I will be thinking of you as well and wishing you the very best. You are such an awesome person, an earth angel!!!  If I possibly could, I would hug ya too!!!!  

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by rumpled, Oct 07, 2013
I decided not to go ahead with the radiation. In my case (no visible tumor just tests off the charts), and the radiation risks, I have been suppressing the tumor with dexamethasone. That has side effects as well. I have gained weight, my bone scan readings are not improving anymore (Cushing's has decreased my bone density already), and I still have muscle issues with myopathy.

I want to keep my last hormone (ADH) as long as I can, and the issue of radiation is still on the table for me.

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by LVGirlRN, Dec 17, 2013
MY GOODNESS! YOUR TREATMENT SOUNDS VERY VERY CONFUSING TO ME? where do you live? Have you been refered to experts in Pituitary Disorders and Tumors (Endocrinologist & NeuroEndocrine Surgeon or Specialist) ?? I also have a pituitary tumor. Your adrenals were removed, did you have a pheochromocytoma?? What was the reason? And your thyroid was removed. Was this thyroid cancer?? Dexamethasone or any other steroid will cause a drop in bone density but the payofff of this drug for certain ailments is well worth the risks at times. You must make the decision based on your illness and how much it helps you live a more normal life. HAVE YOU BEEN TESTED FOR MEN-1?? MULTIPLE ENDOCRINE NEOPLASIA TYPE 1? I believe there is also a Type 2. This is a hereditary disease that causes disorders in several different glands of the body and so far with you, I count 3 - the thyroid, the pituitary and the adrenals. Why does your Dr want to give you "blind" radiation towards your pituitary?? That sounds crazy dangerous to me! And removing the ENTIRE pituitary put you in so much danger for so many imbalances. Your pituitary controls almost everything! Your temp, your heart rate, your blood pressure, your body water balance - like how much you sweat or dont or how your kidneys react to water balance, it manages your sex hormones, your growth, etc etc etc. PLEASE PLEASE CONTACT THE PITUITARY CENTER AT UCI OR UCSF IN CA OR THE  BARROW NEUROLOGICAL INSTITUTE IN AZ, USA. I hope you are in the USA. I URGE YOU TO SEE AN EXPERT IN PITUITARY ENDOCRINE DISEASES ASAP FOR A SECOND OPINION! Whoever is giving you this extreme advice worries me if it is the best advice for you. I dont know your history but this is the most extreme thing you can do is just remove the pituitary. If you do you must be followed by a Dr that knows Exactly!! what they are doing as you will have to monitor and replace EVERY hormone! and I dont know how the Hypothalamus in the brain will react without the feedback mechanisms of the pituitary and the adrenal AND the thyroid gone! You poor thing! Im just starting down your road! I have had many of the same tests. PLEASE SEE A PULMONOLOGIST - LUNG DR -THAT IS BOARD CERTIFIED AND SPECIALIZES IN SARCOIDOSIS AND PULMONARY FIBROSIS! Have you had a broncoscopy yet with lavage? This is a camera that goes into lungs to take pictures and saline is washed into lungs and collected to view the cells inside the lungs and to test for bacteria and fungi and sarcoidosis. They will take a bit of the fibrotic scarred area (a biopsy) and check for sarcoidosis or cancer. This will give you a 100% definitive answer of whats there! Have you had your serum ACE (Angiotenson Converting Enzyme) Tested? Its a simple blood test. Ask a Dr (Pulmonologist is best), any Dr can order it. High ACE in the blood points mostly towards Sarcoidosis but other things as well. I can tell from some of your tests that someone may have been trying to rule this out, etc. Also, have you been exposed to any heavy metals? Cobalt, Arsenic, Lead, Chromium, Nickel, Aluminum, Molybdenum?? You can be exposed via hardware in your body (you mentioned surgical clips in your body) or thru your occupation? Many of these metals are now leaching from medical hardware once thought safe, BUT SURPRISE!! My exposure came via a spinal implant and screws, rods.. THIS IS A VERY NEW FINDING! Many Drs will say "impossible"! Its NOT impossible! Its REAL!! I had to ask 4 Drs before one agreed to test me... Ask and ask your Drs to run blood plasma or serum tests for ALL OF THE LISTED METALS ABOVE. They are  all part of different alloys of metallic medical hardware. If you test above the high limit, you need to see a Toxicologist. There are only 40 qualified Toxicologists in the USA! UCI AND UCSF have Clinics and drs of Toxicology. HEAVY METALS ARE LINKED TO HYPOTHALAMIC-PITUITARY-ADRENAL PROBLEMS, failures and tumors of these glands. Heavy Metals also cause Sarcoidosis. The strange disease all the firefighters got from 911?? Sarcoidosis! They got it from exposure to the toxic dusts and particulates from explosion and fires burning at the site where they endlessly worked with no masks! Bless them, bless you and blessings for me. We all need them!  This has been a battle for you, Im sure! It has been for me as well! KEEP IN MIND, WHAT IM TELLING YOU IS JUST INFORMATION! IT DOESNT MEAN YOU HAVE ANY OF THESE THINGS, ITS JUST MAKING SURE YOU KNOW OF THESE THINGS AND THAT YOU CAN OR NOT CHOOSE TO INVESTIGATE AND RULE THEM OUT OR IN. Disorders in these areas are very complicated and every little piece of info you can get will help you. I encourage you to look up all these things I spoke of and educate yourself. You need to know what your tests and symptoms mean, you need to ask questions, you need to know your options - ALL OF THEM! You dont have to choose what you dont want to do concerning your illness. There is usually more than one road to walk down. Find ALL the paths, and YOU decide what is the best path for you! Im glad you didnt rush and remove your whole pituitary or worse do blind radiation?? whats that all about?? Please call the UCI Pituitary Center. You can look them up online. Make sure if you ever decide to remove or treat pituitary hyperplasia or tumor that your Dr is board certified in Neuroedocrinology and that they have performed more than 100 of this type of surgery which can sometimes simply be done thru the sinuses and other times they cut out a flap of skull and go thru there. Some people have immediate improvement once the bad cells are taken away. Its nothing short of a miracle :)

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by LVGirlRN, Dec 17, 2013
PART TWO

So THERE IS HOPE! IM HOPING FOR YOU! PLEASE HOPE FOR ME! WE CAN ALL GET THRU THIS BETTER TOGETHER! Good luck to you! Get a move on doing some of those tests. If you cannot afford them or have no insurance there are places that can help you!  Social Workers at hospitals or elsewhere. You just have to find them. Feel free to inbox me if you have any questions.. Remember its just information... hoping it leads you to find more answers... It took me a looong time! No one listened... until I made them! I had been given up on repeatedly! Most Drs do not enjoy a challenge and pathetically lots give up... unbelieveable! challenge, mystery, searching, discovery... this is the intrigue, the beauty of medicine... if you dont like these things, you are in the wrong field!!  I now only see Drs at teaching hospitals and facilities. They know the most recent medical knowledge, they are years ahead of the Drs that have been "out of the scene"  educationally for a long time! Good luck!

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