Adrenal Cancer

[Dianita]

UroDoctor is not replying to the posts addressed to him.
If he is not anymore available, PLEASE can another professional physician thelp me with some information.

I have been corresponding with UroDoctor concerning an enlargement of my left adrenal gland and the possibility of it being a pheochromocytoma.

My endocrinologist confirmed that I have a pheochromocytoma, and I will go through surgery.

Please inform me, if my pheochromocytoma is malignant, do I expect to live one month, less or more ?

I would very much appreciate your replying to this post.

Thank you so much !

Dianita

[Beaverlumber]

Hi there,
How are you feeling these days. I have a lot of the same symptoms as you.
kind regards,
Beaverlumber

[Dianita]

Hello !

Thank you for your message.
It helps me feel less lonely.

I went through surgery on 8th January. I was removed the left adrenal gland with the pheochromocytoma.
It turned to be benign.
My endocrinologyst continues ordering me tests because he says that 10% of pheochromocytomas become thyroid cancers.
Maybe, not certain, I also have a bone cancer. Further tests will confirm or rule out.

Do you also have a pheochromocytoma ?

Please tell me about you, and what you are going through. I think that by exchanging together, we feel more supported and less lonely.

I live in Montreal, Canada

Best regards,

Diana

[Beaverlumber]

Hi Dianita, I am just in the process of being diagnosed.
[moderator note: e-mail address has been removed]
Anita

[Dianita]

Hello Anita,

I wish you luck !

Please keep me posted.

Diana
My real name is Diana. My username had to have more than 5 letters, that is why I changed it to Dianita

[Beaverlumber]

Hi Diana,
Here is what they have found out so far,

I noticed I had my TSH level for my Thyroid checked numerous times, but never my T4 Free or T3 Free.
They came back indicating Crisis Value, where the lab must call my Doctor within 10 mins.

Things have progressed after seeing a Endocrinologist, from thinking it was a simple Thyroid problem to;

Multiple endocrine neoplasia, type IIB (MEN-IIB)
with the complication of pheochromocytoma.

In English this means;

MEN2 is diagnosed when a person has more than two endocrine tumors in the body, and is found to have a faulty gene (genetic mutation). A person can also be diagnosed as having MEN2 if they have one endocrine tumor and one or more members of their family have been diagnosed with MEN2.

I also have this Pheochromoctoma which is a complication or addition to Men2

I had my first sort if TIA/Headache/Seizure thing in 1993. They come in clusters of 3 or 4 in a week and then I go for months or years without one. I had one on Saturday morning and was taken by ambulance again to the hospital where they give me lots of Morphine for the pain. It lasted about 90 mins this time.

A pheochromocytoma (fe-o-kro-mo-si-TOE-muh) is a rare tumor that develops in the core of an adrenal gland. You have two adrenal glands, one just above each of your kidneys. Your adrenal glands produce hormones that give instructions to virtually every organ and tissue in your body.

If you have a pheochromocytoma, your adrenal glands can produce too much of certain hormones, raising your blood pressure and heart rate. A pheochromocytoma may be life-threatening if unrecognized or untreated.
If you have high blood pressure caused by a pheochromocytoma, excessive force on your artery walls can seriously damage many of your vital organs. The higher your blood pressure or the longer it goes uncontrolled, the greater the damage. Untreated high blood pressure may lead to heart attack, heart failure, stroke, kidney failure, cognitive decline, dementia, visual impairment and premature death. Having high blood pressure may also lessen your ability to think, remember and learn as you age.

As you can see this really sucks... I am in shock at the moment

[Dianita]

Hi Anita,

Please don't worry. You might have something that turns to be benin.

Is the Multiple Endocrine Neoplasia and the Pheochromocytoma, the endocrinologist's diagnostic or just a suspicion......

There are specialized exams to confirm or rule out these diseases.

Good luck

Please keep me posted

Kind regards

Diana

[Beaverlumber]

confirmed now they are doing bone scan lump on tibia attached to bone. Liver is to be biopsed as it show signs as well.

[Dianita]

Anita,

I don't understand. The exams they are doing you now are not at all related with the Multiple Endocrine Neoplasia nor with the Pheochromocytoma.

Have these last 2 been confirmed, and exams are being done on other suspected diseases?

Please keep calm.

Please keep me posted

Regards

Diana

[Beaverlumber]

They are doing urine 24 hour test
calertonin
ETR
CrP
CEA
tests plus a whole slu of hormone tests
LH, FSH, cortisol, TSH Ft4, ft3, ACTH, Calcium HTh, 250 HrI,D, Estradol, Anti-TPO ab
Does this make sense?