Surgery

Hello. Now I'm totally lost. She called me yesterday and wants me to do pet ct.  She didn't like the numbers on initial ct report of adenoma. Some hu and wash out numbers.  Hu is above 10. Which she says seams concerning.  I'm so afraid.  Can't sleep.  I'm sure insurance will not even pay for it  . It's one of the most expensive tests. I don't know what to do. Going through all those tests. Cushing confirmed.  I just want this thing out. It's 2.6×3.0. I feel like I'm loosing time here.  Do you know if adenoma can cause a light pain and discomfort? Does pain mean it's malignant? Thank you for your reply. 

Ok, I can appreciate that you are really worried but Cushing's is not a serious condition nowadays. If you need an op, it is fairly straightforward whether it is on your pituitary or on your adrenals. From what you say, I assume you are in the US and don't have the very very nasty communistic national health services that we have in Europe, where you get what you need without question. So I think you need to speak to your insurers to see if they have any reservations.

You didn't say whether the adenoma is on your adrenal gland or your pituitary. If the latter, well mine was that size too and I had no pain ever, just eyesight problems as grew to distort my optic nerves. Cushings [primary or secondary] at least makes its presence obvious whereas the opposite (Addison's, low cortisol) just results in slow decline. I've read of people with adrenal tumours having pain as the first indication. I don't know how often these are malignant but if the postings on here are any indication then the answer is zero.

This is easy for me to say I know but the best you can do to keep sane is to take it one day at a time. There are a million possible futures, some good some bad, but only one of those futures is yours and you don't get to choose it.  So your focus has to be on what you can do to make it easiest for you and your family. Worrying yourself sick about the other 999,999 is a waste of your valuable energy.

Thank you for your response.  Adenoma is on my right gland. First they say not to worry, but as I mentioned before she called me for more scanning.  I'm going crazy, can't eat , can't sleep . I know cushing is not the most terrible thing  and is curable.  What scares me is why ct isn't enough for her when for most people diagnosis were based on ct. 

The CT of your adrenals is indeed enough to diagnose and has found the tumour. If it is operated on, histology will determine if there is anything more to it. I don't believe that a CT (or an MRI for that matter) can determine what kind of cells are present. So the request is not sinister.

After I had my first pituitary MRI, I got called back for a second one straight away and naturally like you I went into panic mode. I relaxed when I found out that the second one was to use a "contrast agent" to make the blood vessels show up - see "Angiography" at Wikipedia. My endo requested this to make the surgeon's job easier.

But if it is not anther CT of you adrenal gland and actually a scan of your pituitary, then I think she is being ultra-cautious [or more likely, her medical malpractice insurers are!]. You could have a functional tumour on your pituitary as well [giving you primary and secondary Cushing's] but you'd be more likely to win the lottery by finding the winning ticket on the street! But if you do, it STILL doesn't mean cancer!

I really think your endo should have explained her rationale but medics don't seem to realise that when you say you don't have any more questions that actually it means you have no idea what questions to ask or even what the answer means!

I just got authorization for pet ct, for adrenal tumor. They will schedule me somewhere next week. I will let you know how things are. What scares me is why they do it. Something made them concerned on previous ct with contrast. Though the first report suggested that it was  lipid poor adenoma with 6 months follow up, but later she looked at hu numbers calculating with wash out percentage.Can't control myself.  Totally scared. Can't eat . Dunno How I'm going to survive till results.  Thank you, Roddy. Will keep you updated 

One of the reasons that medical care in the US [but increasingly worldwide] is so expensive is ambulance chasing lawyers. Even to defend a silly malpractice allegation is very expensive and time-consuming. On the positive side, it keeps the medics from getting complacent. But most of the time it just leads to many more tests of marginal value so that the doc can show full due diligence. So if there is anything that doesn't have a convincing explanation before surgery, it has to be checked. Let me say again: a CT or MRI scan can't determine whether or not a tumour is cancerous,

I understand how you feel, I've been there. We all have different coping strategies: mine was to read voraciously. Some people just get enraged and take it out on their family and want to sue somebody, anybody. Trust me, you will get through this. You've got through the hardest gate, which was to get taken seriously and get at least a preliminary diagnosis. It gets easier from here on in.

Hello Roddy. I had my pet ct test. Still don't understand. It showed the  same adrenal nodule which is hypermetabolic with 4.0 suv. It can be seen with both bening ang malignant etiologies.  Doctors didn't even call me. And trust me they know what I'm going through.  I don't understand all these tests can't see for sure. May be because of iit's size.  I don't want to wait I want this thing out asap.  Let hope for the best. Let you know as soon as I know myself.  Hope you are feeling good.  

I can never understand docs that think "if you have nothing to say, say nothing". In other walks of life yes ok but when someone is climbing the walls then what does it cost to say that nothing new was found. 30 seconds? Just to say that no news is good news, well not bad news.

Reading wikipedia about the PET-CT, the tests must cost a fortune so some serious back-covering going on! [I'm  being cynical again, ignore me!]

My best guess is that they don't want to operate twice so they need to be sure that they have identified the precise location and volume of the tumour - perhaps it is not easy to tell normal from abnormal?

"It can be seen with both benign and malignant etiologies" means it might or just as easily might not be cancerous, that it would look the same in either case. So they won't know until they take it out and send it to the path lab for analysis. Either way, it only affects follow up treatment, what kind of meds will you need.

I'm feeling great, amazing you should ask given your circumstances!, I'm one of the lucky ones. I had a non functioning* pituitary adenoma, eyeball sized on something like the last joint of your little finger. So my pituitary had shut down meaning no signal hormones were being send to adrenals, thyroid etc, so no cortisol etc. I had it out and went onto hormone replacement (hydrocortisone etc). So I went from dead man walking to strong, fit. No ongoing problems, I got a lot of help here at the time so feel its my turn to help others if I can.

* Non-functioning means "doesn't do anything, even when it should". "Functioning" means it does do things even when it shouldn't!