Thursday, August 13, 2009

Déjà Vu

Between two funerals, two jobs, and my daughter's wedding, I haven't had much time for my blog. I'm not going to promise to do better, but I do promise to try. The "want to" is there, but the body isn't cooperative sometimes.

I'm testing again with a high probability of the recurrence of the big "C". Or is that "CD"? I have high tests mixed with high normals again, with more and more "highs" and less and less "high normals". Am I surprised? I guess not. The recent research articles cite a recurrence probability of 50% or greater, depending on how each defines recurrence and within what time range from date of surgery. Frankly, we see a much higher recurrence rate on the Cushings-Help message boards, but that may be because those with a cure go on to live their lives. We sure do see a lot of them return, though.

What's next?

I'm sending my recent pituitary MRI (July 24th) to two top neurosurgeons to see what they think. Since my last tumor invaded the cavernous sinuses, there are probably rogue tumor cells all up there. I doubt another pituitary surgery will even be feasible, but I'll see what they say.

I'll keep testing with 24-hr and 10-hr UFCs for cortisol and 17-OHCs , with salivary cortisols, and with midnight serum cortisols.

I'll probably have to have an abdominal scan at some point to look at my adrenal glands.

What are my options?

If pituitary surgery is out, I doubt gamma knife or other radiosurgery will be viable, either. We'll see. I'm not sure I'll choose that route even if it is. Seriously, I doubt it. The other options are 1) Ketokonazole for a short period of time until I make up my mind and 2) bilateral adrenalectomy. It's either both or the latter. With my endo's blessing, I may try the keto for a while and see how I do. In the long run, though, option 2 is a huge probability.

Keto does affect the liver, so it is not a long-term solution. It might buy me some time to think through all my options, though. A bilateral adrenalectomy (BLA) will allow me to trade an unmanageable disease for a manageable one. In other words, I'll trade Cushing's for an Addisonian state. What's two more hormones to add to my bevy of pills and shots? Well, since one affects the other, it can be a juggling act. I'm already panhypopit, so I do have several to balance.

Why would I chose a BLA over another treatment?

  1. With rogue tumor cells loose in my cavernous sinuses, there is no guarantee they can be removed totally, nor do we know for sure if I have hyperplasia of the pituitary with tumor cells all throughout. It was posed as a possibility on the pathology from my last report with no consensus from three pathologists at renowned institutions. I'm an enigma.

  2. Radiotherapy/surgery affects surrounding tissues and carries some risk. It also is not a guarantee, plus it affects surrounding tissue and structures. The optic nerves and carotids are awfully close to the pituitary. Not only that, but it takes years to work. I need something NOW. My body is being torn up from this disease. Nor am I at high risk for Nelson's at my age.

  3. A total hypophysectomy (removal of the whole pituitary gland) is not a guarantee. Remember those rogue cells in the sinuses....? Anyhow, that would also leave me with diabetes insipidus, which is very tough to control.

  4. A BLA is just about as certain as it gets, although there are those who aren't cured with a BLA due to rest tissue and/or ectopic tumors. However, it offers the highest chances for a cure. But without rigorous attention to hormone replacements, one can easily die. Two important hormones of the eight or more produced by the adrenals, glucocorticoids and mineral corticoids, are necessary to live. Those are replaced typically with hydrocortisone and florinef.
As I make decisions and get information from my doctors, I'll fill you in more. At this point, this is where I am.


  1. "A bilateral adrenalectomy (BLA) will allow me to trade an unmanageable disease for a manageable one. In other words, I'll trade Cushing's for an Addisonian state."
    OH THATS how thats supposed to work! I missed that memo somehow or maybe my body
    Really, so sorry hun.
    Not that you are asking, but if I had to do it all over I wouldn't do another pit. Seems there is just too many going through sinus infection after infection. KWIM? I think you have a good plan. Good luck hun
    luv ya

  2. You definitely have your finger on the pulse Robin. How sad that these are our only options. Trade one disease for another. I am sorry you are having to go through this again.

    All I wanted was a DX. No one told me that the "cure" came with such side effects, and complications and that a recurrence was likely imminent. I just really thought I was going to go into surgery and come out with my life back. Ignorance is Bliss!


  3. Hi, Christy and Cyndie. Christy, knowing your story...yes, I understand!!

    Cyndie, I was that ignorant as well. And it was/is probably a good thing. No one will do a BLA on a pituitary adenoma patient without trying the pit surgery first. Frankly, I think we should have a choice the first go-round if the tumor isn't impinging on other structures.

    Hugs to you both....



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