Caregivers Month

× Cushing's Syndrome is a debilitating endocrine disorder characterized by excessive cortisol levels in the blood which may be the result of a tumor of the pituitary gland, adrenal glands or from tumors or cancer arising elsewhere in the body

Cushing's without surgical remedy

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Replied by pnaadmin on topic Cushing's without surgical remedy

Hello Spacehog,

I posted this information on the other question that you had but I will add it here to and a little more, as this will help with some of the questions.

I know that getting a diagnosis without all the answers can be scary. So the more you can educate yourself about Cushing's the better you will be. Finding our website and reading up on reliable information is very important. Even more important is finding pituitary specialists to treat you. Not all doctors have enough experience treating people with pituitary disorders so finding a specialist is very important to your future quality of life. Pituitary specialists also will order the proper hormone testing and correct MRI imaging so that they can determine the source of your Cushing's. Pituitary tumors can be difficult to see on an MRI, so the person reading your MRI's also needs to have experience. 

I cannot emphasize enough how important specialists are. To a pituitary specialist you are the kind of patient they see all day. To an inexperienced doctor you are their rare case. In this case you want to be every day, not rare. 

Here is a link to a list of pituitary specialists:

https://pituitary.org/medical-resources/physicians

Here is a link to a list of pituitary centers:

https://pituitary.org/medical-resources/hospitals

Here is a link to our page about Cushing's syndrome. 

https://pituitary.org/knowledge-base/disorders/cushing-s-syndrome

This information was written by the experts and it will hopefully answer some of your questions. It is also important to note that everyone's case is different. Try not to let the experience of others worry you. What works for some may not work for others and your case will be individual to you.

I will try to answer your questions individually but some will be better answered by the links above.

1. First and foremost you have to make sure that the proper testing is being done. Just like doctors and people in general not all MRIs are the same. Make sure the pituitary is the focus and make sure the person reading it has experience locating pituitary tumors. 

2. Finding a pituitary specialist will give you the best shot at a good quality of life going forward. I know many people who have a great quality of life and are in complete remission even with a tumor that was difficult to find. With successful remission your life expectancy should not be any different from anyone else. 

3. New medications are being developed all the time so there are options and even clinical trials you can get involved in. 

I highly recommend that you also watch some of our webinars on Cushing's there are several that discuss Cushing's in detail and each one has a question and answer portion at the end so make sure you listen to the whole conversation. Here is a link to our webinar page:

https://pituitary.org/knowledge-base/pna-educational-webinars

We will be doing another webinar on Cushing's in August so if you are not already signed up for our newsletter you should get added to the list so that you get our webinar announcements.

I hope this information is helpful. Feel free to contact us if you would like additional information or if you have any other questions.

Take care,

Tammy Mazzella
Pituitary Network Association
(805) 499-9973 
[email protected]
4 months 2 weeks ago #10672

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Cushing's without surgical remedy was created by Spacehog

Ahoy there!  I am new to this site and to Cushing's Syndrome.  I am still trying to figure out what to expect, but that is difficult to do without hearing from folks who actually have or had the condition.  I'm sure the articles I am reading are fine for what they are, but I doubt they cover the actual experience of it all.  I myself am a straight shooter and I won't shy away from bad news.  If it turns out that the doctors cannot operate on me, then I get the impression that I am in some fairly serious trouble.  But I don't really know that, I am guessing based on what little I have learned so far.  So here are some questions I am currently looking for answers on...

1.  Suppose the doctors cannot find any sort of tumor/cyst around my pituitary gland.  Let's also assume that they find no cyst/tumor on my adrenal glands.  What would they do in that situation?  From what I gather, taking medication to fix Cushing's isn't a great option for whatever reason.  So yeah, to re-state my question:  What is typically done in cases where no tumor/cysts are found?

2.  What kind of life expectancy should one have if they have Cushing's?  I know that is probably difficult if not impossible to answer, but any insights would be appreciated.  Although I cannot find a good answer to that online so far, it seems like untreated Cushing's is basically a terminal illness.  Maybe it takes 10-20 years, but I am sensing that life will be cut much shorter without treatment.  Is that so? 

3.  Can someone describe the medicinal route?  I heard from my endocrinologist that the current drugs are not exactly effective and are also not good to take long term.  She didn't give me much more, but she's kind of a rookie doctor anyway.  I am about to start up with a new doctor, but they haven't given me an appointment yet and I'm crawling the walls until I can get some answers.  Does anyone here take medicine to manage their Cushing's rather than having surgery?  If so, what kind of side effects do you experience?  Also, has your doctor given you a general idea of life expectancy? 

If my questions are too tough to discuss, that is fine.  But if anyone does feel like discussing such things I am all ears.  If it turns out I've got maybe another 5-10 years left to live, so be it.  I'd rather know about it if that is the case.  But I understand that discussing such things makes people uncomfortable.  So I apologize if this topic is a little out of bounds.  I suppose my doctor would have a better answer anyway, but I like to measure the info I get from doctors with the info I get from patients.  So if you have any insights on any of these questions I appreciate it.  Thanks!
4 months 2 weeks ago #10670

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