MY RELATIVES HAVE ADRENAL TUMORS!

WOW So my mom told me a few weeks ago that she has a cousin named Mai in Vietnam who had an adrenal tumor. I was in disbelief since this is supposedly a "rare" tumor but someone in my bloodline has one too. I was curious to know more so I asked for my mom's cousins contact and wrote to her. She then responds to me a week later to confirm that she did indeed have a adrenal tumor. Due to the language barrier it was hard to communicate but from what She told me she did not have Cushing's Syndome but another syndrome called Pheocromocytoma  Syndrome. Her first surgery was unsuccessful but her second time was a success because they removed the whole gland with tumor. Ans she does not have to take Steroids since it is not like Adrenal insuffiency.. It was very hard to think that we have a connection. Upon discovering this crazy crazy revelation, Mai mentions that her cousin (Nancee) from California also has an adrenal tumor and Cushing's Syndrome and was diagnosed this year and had her surgery in April... What.... Another distant relative from my mom's side has an adrenal tumor AND Cushing's?? This is so hard to believe yet an amazing discovery.. I then was more curious to speak to Nancee and waited to get into contact with her.

Another week passes by and Nancee responds. She also confirms that she has an adrenal tumor and Cushing's syndrome. She is 42 and has had Cushings for about 6 years and had her surgery this April. Her symptoms are classic CD symptoms much like mines and now in recovery. Just like ours, her recovery is rough mostly with the depression and body pain. We then relate to our bad experiences with most doctors and endos who have not treated adrenal patients and are usually baffled by our cases.

I just can't seem to put together this fact that two of my distant relatives had the adrenal tumors and all this time I believed that it was a rare tumor that only affects a 2 out of a million people. We know that not all families get Adrenal/ Pit tumors or have CD but what about the ones that do? What is the connection? Why do endos, text books and online research claim that Cushing's is an isolated disease when now there is evidence that it does happen to family members. Just like the other story I posted about the brother and sister who both had CD? Now It's more evidence to support this theory and for us to believe that Cushing's is not isolated and very much prevalent.

 FORGET WHAT THE DOCTORS, INTERNET AND TEXTBOOKS TELL YOU. How is this possible??? I will try to investigate.

Endocrine Article Abstract: Improving concept of recovery in endocrine disease by consideration of psychosocial issues

Improving the Concept of Recovery in Endocrine

Disease by Consideration of Psychosocial Issues
 Nicoletta Sonino and Giovanni A. Fava

Stringent criteria have been established to define remission

by hormone parameters in several endocrine disorders.

An example is provided by the criteria for cure of

acromegaly (1). However, it is clear that such criteria are
far from being comprehensive of a patient status, and often there is a need for filling a gap between the “hard data” of
laboratory results and imaging findings on one hand, and the “soft information” related to the patient presentation
and complaints on the other hand. Indeed, long-standing
endocrine disorders may imply a degree of irreversibility
of the pathological process and induce highly individualized affective responses based 
 Hormone replacement may not fully restore optimal
endocrine balance, and subtle dysfunctions may still exert
their influence on psychological states.

When surgery is performed

the patient is likely to have expectations of a
quick recovery toward his/her former normal condition.
Unrealistic hopes of “cure” may foster discouragement

and apathy.

Harvey Cushing himself had acknowledged

the difficult recovery of patients suffering from pituitary
disease: “It is even more common for a physician or surgeon
to eradicate or otherwise treat the obvious focus of
disease, with more or less success, and to leave the mushroom
of psychic deviations to vex and confuse the patient
for long afterwards, if not actually to imbalance him” (5).

Currently, however, the average endocrinologist is still

unfamiliar with the psychosocial aspects of patient care,
both in terms of personal skills and organizational structure,
and lacks an adequate background for facilitating the
process of recovery.
 

Indeed, the definition of recovery

in endocrine disease should not be limited to
normalization of hormonal values, but should be broadened
to the psychosocial status and functioning of
the patient.
 Patients have become more aware of these
ssues and their difficulties in coping with endocrine
illness, and its often severe psychological consequences
have led to the development of several patients’
associations.

The psychosocial impairment that is associated with

incomplete remission from endocrine illness requires
novel modalities of clinical interventions, as we outlined
by introducing the concept of rehabilitation in
endocrinology (7), to allow patients to progress toward
an optimized state of health. Rehabilitation in endocrinology
may be indicated in the following cases: 1) delayed
recovery after appropriate treatment; 2) discrepancy
between endocrine status and current functioning;
3) presence of a decline in physical and social functioning;
4) persistence of important comorbidity, with special
reference to psychiatric disturbances; 5) abnormal
illness behavior; 6) problems with lifestyle and risk behavior;
and 7) potential role of stress in endocrine disturbances.
An endocrine rehabilitation team should ideally

include a trained clinical endocrinologist, a physical

therapist, and a psychologist, with opportunities for
other specialist consultations. The role of the psychologist
would be essential for a more precise definition of
the patient’s psychological symptoms, for understanding
coping difficulties, for modifying risk behaviors,
and for offering advice and support to spouses and family
members of patients undergoing the various phases
of illness. The goal of multidisciplinary approaches
would be to ensure education, support, and specific interventions,
helping the patient and his/her family to achieve optimal coping with the difficulties of the recovery
process (7, 8).
 
^^Yes I agree 100% of this article. Not only do hormone values need to be evaluated but also psychosocial status too and a rehab team is a must!