pituitary tumor

[jmanuel68]

It all came to a head the end of April with flu like symptoms which continued to get worse with nausea and diarrhea until I was so weak I couldn't stand. Admitted to hosp., blood work showed very low sodium level 110, followed by chest xray and CT scan (I have a pacemaker, so therefore no MRI) which showed a 2.9cm. macropituitary adenoma. A CT scan had been done 71/2 yrs. earlier for other reasons which when looking back showed that the tumor was there at a size of 1.9 cm.
Last week I saw the endocrinologist again, after all the repeat blood work had been done. The original blood work for my cortisol levels while in hospital had showed that they were fine, which had surprised the Dr., but the repeat blood work showed a lower level of the cortisol hormone, which means that my pituitary gland is not producing the way it should. Therefore she gave me a prescription for hydrocortisone (cortef) which is a steroid and I am to take 10mg. in the am. and 5mg. at suppertime. After a day and a half of taking the medication there was a significant increase in my energy level. However none of these drugs are without their side effects and although the increased energy feels great, it is not naturally being produced, it’s the medication that is doing it. For this reason I was of the opinion that if/when I had surgery, my pituitary would possibly be able to resort back to functioning on it’s own and was lead to believe that surgery was probably the best option. (at least in my mind, it was). Long term effects of the cortisone can have other implications, such as diabetes, kidney problems etc.

Phase two: Yesterday, I saw the Neurosurgeon. He discussed the options and asked how I felt about surgery. I said I was anxious to have it done and over with. He proceeded to discuss all the risk factors involved in surgery, which are many, but some of them quite rare. In my mind, the logic was, that the sooner I get the tumor out of there, the better I would be on all accounts, i.e., risk of having a repeat episode of sodium level dropping, risk of further damage to the pituitary gland and subsequent problems with continuing to take the steroids, risk to the optic nerve if the tumor continues to grow larger, so I was fully prepared to go forward. However, in conclusion when I asked the Dr. what he would advise if one of his loved ones were faced with the same thing, he brought up the fact that I’m not as young as I used to be ( I am a 68yr.old female) and possibly there might not be any further problems with the tumor being there, also my chances of discontinuing the hydrocortisone, even after surgery are probably not so great, so perhaps it would be better to monitor it for the next year or so and see what happens. That comment sort of ‘burst my bubble of logic’, so even though I signed papers agreeing to go forward with the procedure, I’m beginning to second guess my decision and don’t have the peace about it that I had going into the appt.
Any comments or suggestions gratefully received.

[rumpled]

I don't know if you are seeking out pituitary surgeons, but you need to see a PITUITARY surgeon only - and you need to be under the care of a neuro-endo. I suggest that you need to find a pituitary center.

The surgeon that you saw, from what you posted, I would guess IS NOT skilled in pituitary and has no idea what the pituitary does and has no idea what he is saying about the pituitary. I would completely disregard his opinion - as a fellow pituitary patient. It does not matter your age. That tumor is large and needs to be treated. And low cortisol can, frankly, be deadly. He is only correct in that you would need meds for the rest of your life. I am also on them the rest of my life.

Your endo does not seem all that with it either. You need a pituitary endo - so please look at the health pages (see to the right) and read up.  You have a macro-adenoma and that needs to be addressed. Some can be treated with meds but I don't see that your type has even really been established properly (some other types can also lower cortisol by just location).

I would beg of you to cancel the surgery and find an EXPERIENCED surgeon as larger tumors require even more experience that this guy does not sound like he has. Surgical experience is the NUMBER 1 factor in good outcome. Don't mess this up. Find an excellent doctor.

If you have any more questions, please feel free - but you need serious help from skilled people.

[jmanuel68]

We live in Canada in the Atlantic provinces and don't have access to the kind of specialization that you are referring to. I will check for information in some of the larger centers for such specialization.
I feel confident with the Endochronologist and her testing and diagnosis but not so certain after my visit with the neurosurgeon. The tumor is a non functioning one according to the test results.
I will continue to do my research.

[rumpled]

I have some friends in Canada - some of them come to the US - but actually there are specialists in Canada.

The websites that talk about pituitary in general do list some doctors and some are in Canada as well. You may have to wait longer - but in your case, you may want to wait for a better surgeon. One of my Canadian friends actually went to the US and contested the govt. for payment and got it since few specialists exist up there - she had both pituitary and adrenal surgeries in the US (we used the same pituitary surgeon!).

So, I have quite a bit in the health pages, but feel free to post or PM me if you have other questions. It is tough - even here I have pain $$$ out of network to get better surgeons just to make sure. It is just so difficult when you are not feeling well to do all this.

[jmanuel68]

I am considering asking for my reports, scans etc. and sending them on to be reviewed by a neurosurgeon in a larger center, for their advise on the situation. There are long wait periods to see a specialist especially outside of ones area, so that is something to take into consideration as well

[rumpled]

It is a good idea to have copies of everything in any case. I learned the hard way to have them.

I would ask for a review. I would also make sure the surgeon you are contemplating is very very experienced - larger tumors can require more skill. I don't know if your tumor grew up around the optic chasm, or down into the inoperable areas like cavernous sinus, or wrapped around the carotid - but it is helpful to know and to know exactly what the doctor can and cannot remove and his/her experience in removal of tumors of the same type.

It is unfortunate, but the larger tumors can grow back (mine grew back as well) and get large again, so you may also be looking at radiation. There are many forms and you need to look into that as sadly, they are not great at telling you the longer term side effects. Not everyone gets them - but you need a really competent team on your side.

[kiwib207]

Hi there  :)
I just wanted to offer some hope.  I had the surgery for a pituitary macroadenoma in February of this year.  I had a relatively sizeable one too, ~2.9 cm by 1.9 cm (I guess they all are rather sizeable by nature of the name "macro"--lol).  The tumor was wrapped around my right carotid artery.  I went to a highly specialized pituitary neurosurgeon (UF Shands in Gainesville) for my surgery. I was blessed in that when they did the surgery, my tumor had a lot of fluid around it and as a result, it pulled away from my carotid during the surgery.  I completely agree with Rumpled in regards to seeking out a neurosurgeon who specializes in pituitary surgeries.  Although it was a scary situation for me and my family, I can honestly say that I have had the best experience possible under the circumstances.  I had excellent care and feel so much better than I did when I had the tumor.  My energy levels are like night and day compared to my pre-surgical levels.  I did have my hormone levels tested every 2-3 days for a little while after surgery but all of my hormones are fine and I haven't had to have any hormone replacement drugs.  Prior to surgery, I had expressed a feeling that "something was just wrong" with my body numerous times to my husband and mother for years.  I feel like all of that has lifted; I feel normal again.  Phew!  I just wanted to share my experience.  I know that everyone's experience is different but having the surgery was a very positive thing for me and in a weird way made me re-evaluate what was important in my life at an early age.  I'm so glad that I had the surgery.  I pray that whatever you choose, it is the best decision for you and that you will be healed soon whichever path you decide to take. :)

[jmanuel68]

Thank you for sharing your story and I am happy that you had such a positive outcome. I have been doing a lot of research and am looking into sending my reports and scans to a Pituitary center in Toronto (I live in the Atlantic provinces in Canada). The endochrinologist and neurosurgeon that I see here are well spoken of but because of some other health factors (ie. a pacemaker, therefore no MRI just CT scan) I am pursuing some other areas who probably have had more experience in dealing with similar situations. My macroadenoma is basically the same size as yours was and appears to be causing slight problems in the field of vision. It is a non functioning tumor but has caused some problems with the cortisol hormone already so therefore I am now on cortef, which I don't know if that will be reversed after surgery or not. I am led to believe that a reversal is not likely but instead it is more likely that the dose will be increased.
However, these are some of the reasons I am seeking to find a second opinion from another center. Whatever the outcome I know that God is in control.
Thanks again for the encouragement.

[rumpled]

Be prepared that post-op, often there is a loss of hormones. Cortisol is often temporary - but thyroid usually goes, sometimes growth hormone.

I wonder if your heart issues were related to the pituitary? A lot of us get heart issues...

I am glad you are getting another opinion and I hope it goes well. Do keep us posted.

[jmanuel68]

Just wanted to update and say that I had taken the advise and found a neuropituitary program located about 2 1/2 hrs. from my home. I had an appt. last week and their emphasis was opposite to what I was told here. Whereas the Dr. here felt that the risks of having surgery outweighed the benefits, the Dr.'s there were adamant that I needed to have the surgery and the sooner the better, and their emphasis was on the risks of not having the surgery. So currently I am booked to have surgery on the 18th of Nov. They would have done it sooner but we are booked to visit with our sons on the west coast within the next couple of weeks.
So thank you for urging me to get a second opinion. I feel confident that I am making the right decision now.

[rumpled]

Great - so glad you got another opinion. I am only a layman but my research always points to macro being a take-out unless you can control with meds.

Please update us when you can!