My Adrenal Gland Tumor

My Adrenal Gland Tumor My story with my struggle with a Pheochromacytoma

08/08/2019
For individuals with pheo or para, even seemingly benign tumors have the potential to recur and metastasize. https://t...
24/07/2019

For individuals with pheo or para, even seemingly benign tumors have the potential to recur and metastasize. https://t.co/Uro7jEqZ5Q

“For individuals with pheo or para, even seemingly benign tumors have the potential to recur and metastasize. ”

23/07/2019

Overview

Pheochromocytomas are a rare, catecholamine-secreting tumor that may precipitate life-threatening hypertension. The
heochromocytoma (fee-o-kroe-moe-sy-TOE-muh) is a rare, usually noncancerous (benign) tumor that develops in an adrenal gland. Usually, this type of tumor affects one of your two adrenal glands, but it can affect both.

If you have a pheochromocytoma, the tumor releases hormones ADRENALINE that cause either episodic or persistent high blood pressure. Untreated, a pheochromocytoma can result in severe or life-threatening damage to other body systems, especially the cardiovascular system.
You may be thinking too much adrenaline would be fun but it can make you very sick.

A paraganglioma is a neuroendocrine neoplasm that can
develop at various body sites (including the head, neck, thorax and abdomen). Unlike other types of cancer, there is no test that determines benign from malignant tumors; long-term followup is therefore recommended for all individuals with paraganglioma.

I will be telling my story of how this noy so rare tumor mimics all kinds of diseases and has DRS very confused.

There has been a big jump in numbers . Stats are now 1 in 3000 have pheurpara. As opposed to tbe previous stays of 8 per million .
The jump makes sense since 40% + of these tumors are dx post mortality.

Drs do not understand this tumor especially in my country.

I am waiting patiently to have my surgery in the US or Europe.

23/07/2019

I wanted to tell my story when this is all over but for now I need to have surgery as soon as possible and Aimee Powell from the Pheopara Alliance Projects has offered help to have the surgery in the US or Europe.

I will be telling a story of my struggle with my tumor in South Africa.

Thank you to the pheopara alliance for the inspiration.

In 2014 we found Drs found a tumor on my adrenal gland.
My general practitioner said it was nothing to worry about but I may have another mass in the small Intestine.
She was so wrong!!!!

I had been sick for a while and had to stop working and there went my medical aid.
I saw a specialist who told me the tumor must come out because the size was borderline cancer. He knew Drs at Steve Bico hospital where he trained and hot me an appointment with surgery immediately.
I had a private cat scan done and went to see the surgeons.
This Dr did not want to know anything. She ignored the symptoms and told me if it was a 10 cm tumor she would have taken it out.
She even asked me for the Cat scan and when I asked her for it she didn't remember taking it.

From there I went to the biggest hospital in South Africa, Tygerburg hospital in Cape Town. I had high hopes.
They made appointments for me to see endocrine, surgery and have a new catscan.

This was two hours drive from where I lived and in our government hospital you must be there at 7 am and you will be waiting there all day to see a Dr.
I did the work up, tests went missing, it was a mess from the start.
I couldnt do this, a different Dr everytime with a new story.

I gave up on the verge of a break down ... I was exhausted.
I came back to my home town Pretoria.

My symptoms were getting worse so
last year I started a new work up again at Steve Bico. The surgeon could see the sweat pouring and still asked me if I got my symptoms off the internet. I was shocked nut he did make an appointment with endocrine in three months.
She told me to take my tests in on different days but they still had the 24 hour urine specimen bottles labeled incorrectly.
Eventually I got my catecholamines and metanephrines test results. My son is a Dr and called me to say that I have a Pheochromacytoma.
I went back to the endocrinologist who handed me over to surgery with my diagnosis.
In December of last year I saw the surgeon who booked me into the ward.
The hospital was closing and I came back on the 15th of January.

I met another pheo patient there who told me she was admitted every week for 3 months.
There are not enough Icu beds so she gave up after 3 months. It's traumatizing getting preped for surgery, wait for someone to fetch you and then get told sorry.. we will try next week.
I did that for four months, my adrenaline was going crazy. I could not stay in the ward. I had to go somewhere quiet to stay calm.
I then found an article on Steve Bico hospital that caught my eye. I was in shock. The professor who was about to do my surgery was charged with culpable homeside for the same surgery on another patient.

https://www.iol.co.za/news/south-africa/gauteng/doctors-charged-over-patients-death-still-working-2006462

21/07/2019

Keep our NHS out of US Trade deals

The National Institutes of Health has produced a new video that captures the story of thousands of people at NIH and mor...
19/07/2019

The National Institutes of Health has produced a new video that captures the story of thousands of people at NIH and more than 2500 research research partners around the world who dedicate their lives to improving health and well being.
https://t.co/xFaojgmrlU https://t.co/Osk7G29Iji

A part of the U.S. Department of Health and Human Services, NIH is the largest biomedical research agency in the world.

The huge jump in numbers comes in part from studies like this, which look at data gathered at autopsy. This study shows ...
19/07/2019

The huge jump in numbers comes in part from studies like this, which look at data gathered at autopsy. This study shows a pheo rate of In in 2000...
Not so rare

https://www.ncbi.nlm.nih.gov/m/pubmed/11198571/

Aust N Z J Med. 2000 Dec;30(6):648-52.

However, the most recent USA study up to 2012 has confirmed the incidence beyond 2004 has continued to rise (and rise, a...
18/07/2019

However, the most recent USA study up to 2012 has confirmed the incidence beyond 2004 has continued to rise (and rise, and rise, and rise) and this is covered below in the section entitled “Meanwhile in USA”. One of the principal authors of both database studies has now gone public and said NETs are no longer rare.
https://ronnyallan.net/2015/07/07/neuroendocrine-cancer-not-as-rare-as-you-think/amp/?__twitter_impression=true
https://ronnyallan.net/2015/07/07/neuroendocrine-cancer-not-as-rare-as-you-think/amp/?__twitter_impression=true

Background Although initially considered rare tumours up until 10 years ago, the most recent data indicates the incidence of Neuroendocrine Neoplasms (NENs) has increased exponentially over the la…

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