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MaryO

Since when did Cushing's become a rare form of cancer? I think someone is confused here

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Since when did Cushing's become a rare form of cancer?

 

http://www.spaldingtoday.co.uk/features?articleid=2947664

 

Doug's fight for veterans of nuclear testing

 

A veteran of nuclear testing in the 1950s is highlighting the horrors which continue to be passed down through the generations.

Moulton man Doug Hern is litigation secretary for the British Nuclear Test Veterans' Association, a group which campaigns for recognition and compensation for those who took part in testing in the Pacific during the 1950s and 1960s.

 

The association also counts as members children and grandchildren of those who took part in the testing and who have been born with conditions such as cancer and leukaemia believed to be the result of inadequate protection for the servicemen who witnessed the explosions.

 

Doug himself, who spent a year on Christmas Island, suffers from bone spurs and in 1977 lost daughter Gill when she was just 13 to a rare form of cancer called Cushing's Syndrome, something he believes was passed directly down through his genes.

 

He said: "There is now another generation of nuclear veterans.

"It is being passed on to our grandchildren and there will be no stopping it.

 

"It has deformed the veterans' bloodline."

 

Descendants of the veterans, some of whom witnessed up to 25 nuclear explosions without wearing safety gear, have been born with unusually high incidences of cancer, leukaemia, spina bifida and limb and facial deformation.

 

Doug, whose other daughter Sue is unable to have children, said: "I decided not to have any more children and that's an unnatural thing."

 

However, the association is now welcoming a new report from New Zealand-based

Professor Al Rowlands which found severe chromosome damage in Nuclear Test Veterans.

 

And the New Zealand Government recently made an award to its men of $200,000 to help them in their research and possible legal action against the UK Government.

 

Despite two previous cases, one of which was ruled against at the Court of Human Rights, and another which did not make it to court due to problems with securing legal aid, Doug is optimistic about the future.

 

He said: "We have been a voice in the wilderness. We have been treated worse than the Vietnam veterans in America.

 

"Now I would like to see the Government not sidestep the issue, but recognise we are the most vulnerable veterans in the country from the last 50 years.

 

"And we want recognition for what has happened to our children. We need it to help them.

 

"Young people are suffering things which should only happen to the elderly."

Last Updated: 12 June 2007

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Makes you wonder if someone didn't check facts before writing the article. Someone with a diagnosis

of cushings might go into a panic.

 

Judy

Edited by judycolby

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Not even "respected Dr.s" understand our disease or know how to qualify it. At least they are linking it to something serious like cancer instead of calling it a rare form of depressive overeating and hypochondria.

 

When will people get a brain & can I just go away until they do?

 

Lisa

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Well, maybe she has ectopic carcinoid that has a genetic component or even possibly Multiple Endocrine Neoplasia, as this is a form of genetic based cushings.

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Hi Mary,

 

I have heard it refered to as a cancer before, I just always chalked it up to lack of knowledge on the part of the writer. However, since she died at such a young age maybe there was something especially aggressive about her disease.

 

Funny you bring this up. My sister and I have wondered how much of the family weirdness might be related to my dad being stationed on Kwajalein Island, part of the Marshall Islands, for about 2 years when he was in the Navy. He was 16 ? 18 years old at the time. Most of the actual testing took place Northwest of him but about 2 years before he got there the Navy brought and sank in the shallows off of Kwajalein ships that were involved in the Bikini test that did not sink in the test. It was part of Operation Crossroads.

 

Kwajalein was also a landing field for military planes, we figure he received a pretty good dose of fuel and chemical exposure as well.

 

Interesting site

 

http://www.history.navy.mil/faqs/faq76-1.htm

 

If you look at the numbers of Navy personnel involved it gets mind boggling as far as the possible health consequences that may have been set in motion by their exposure.

 

My sister, brother and I joke around that at least it explains the reason why we glow in the dark when the lights are off.

 

den

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I thought this was interesting. The Endo dept. at Ohio State University is in the James Cancer center! It is a huge campus. It could have been anywhere. I have wondered why it is in that part. Maybe it is a coincidence, maybe not. Who knows.

 

Gracie

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I've been told by someone before that the tumors were cancer but I didn't say anything. I know mine were not malignant SO are all tumors cancer and some malignant and some not malignant??? Violet

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http://www.ncbi.nlm.nih.gov/sites/entrez (Put Adrenal Hyperplasia and adenomas in your search bar).

 

This paper is about Sam and her DAD and her tumors. Written by National Cancer Institute. It's number 18 down written by Horvath, A. I can't seem to link it up to this post.

 

I can send the pdf file to anyone that wants the article in full.

 

Adrenal Cortical Cancer causes Cushing's Syndrome.

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Jackie,

Is this type of Cushings always hereditary ( the micronodular adrenal hyperplasia)? I was told by at least 3 specialists that Cushing's was not hereditory. I have heard that MEN-1 and some kind of pigmented something or other is. Just wondering if this is just a new discovery or what? I know several of my children and grandchildren show signs of cushings. It is just too big an undertaking to seek help unless they really get sick. It's hard enough getting a diagnosis even when you are extremely sick. My pathology report was micronodular hyperplasia. Just wondering what all the other BLA ers had for path report. Sorry, I'm not making much sence. I'm very tired. Violet

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Hi Violet,

 

I think primary pigmented micronodular hyperplasia is associated with micronodular adrenal hyperplasia. PPNAD is associated with Carney Complex a familial syndrome. In some things I have read, micronodular hyperplasia seems to be used interchangeabley with PPNAD others seem to want to make a distinction between the two.

 

http://www.endocrine-abstracts.org/ea/0011/ea0011p82.htm

 

From everything I have read, the underlying causes can definitely make it appear in familial patterns.

 

Sincerely,

 

Den

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Here is the story with that.

 

Sam was diagnosed with PPNAD a variant of Carney's Complex (a genetic disease). However, her path report (which was completed by J. Adien Carney himself) states she had Micronodular adrenal hyperplasia. There was no pigmentation as in Carney's tumors. Sam also DOES NOT have the Carney's gene. Either do her two sisters. They do however some other gene -PDA11A (I think) Stratakis discovered that my husband carries. Sam is/was the first child dx'ed with PPNAD WITHOUT the Carney gene. Though Dr. Carney feels they ARE the same disease. And now Jordan has it too.

 

So as it is known now Sam and Jordan have/had "Stratakis Syndrome, a variant of Carney's complex, without pigmentation".

 

And so it goes....

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Violet,

 

I found an article online from the site: www.medicalnewstoday.com that is titled Two Seville Doctors Discover The Gene That Causes The Hereditary Cushing's Syndrome. It is dated June 13, 2006. It does not say that they are talking about MEN's. It says that according to the work by Dr's. of the University Hospital, the fault is in the gene of the Protein Kinase A of Chromosome 17. "The mutation increases the quantity of cortisol in the blood anomalously, which shows the first symptoms when boys and girls reach puberty." It then goes on to talk about families in France, USA, and Spain that have had the Cushing's syndrome with a specific genetic anomaly. I thought it was very interesting and it seems to contradict what most Dr's tell us!

 

Gracie

 

P.S. I printed off a copy to take with me when I see Dr. F next week!

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This is interesting about the colors of the nodules. As if we are really concerned about the color-just what it does to us. Mine by the way were bright yellow. WOW! colorful! Dr Grim from the hyperaldosteronism site said they were classic Conn's. I'm just glad they are gone. Violet

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Violet,

 

I found an article online from the site: www.medicalnewstoday.com that is titled Two Seville Doctors Discover The Gene That Causes The Hereditary Cushing's Syndrome. It is dated June 13, 2006. It does not say that they are talking about MEN's. It says that according to the work by Dr's. of the University Hospital, the fault is in the gene of the Protein Kinase A of Chromosome 17. "The mutation increases the quantity of cortisol in the blood anomalously, which shows the first symptoms when boys and girls reach puberty." It then goes on to talk about families in France, USA, and Spain that have had the Cushing's syndrome with a specific genetic anomaly. I thought it was very interesting and it seems to contradict what most Dr's tell us!

 

Gracie

 

P.S. I printed off a copy to take with me when I see Dr. F next week!

 

 

Hi Gracie,

 

Thanks for posting this. I think chromosome 17 has been held up as the location for the abnormality that reveals in cases of PRKAR1A (regulatory subunit of protein kinase A (PKA) type 1 alpha subunit) gene related to primary pigmented micronodular hyperplasia and Carney complex (17q22-24). That info has been out there a while I think so the 2006 info must be out of a different location on Chromosome 17.

 

Chromosome 17 has also been implicated in the abnormality found in patients with Neurofibromatosis 1 which has also been linked to locations on or near band 17q11.2. NF1 or neurofibromatosis has been linked to Cushing's.

 

So chromosome 17 may be a culprit in more than one reason for Cushings.

 

Hmmm...

 

den

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Hi Jackie,

 

Interesting article on your family...Absolutely, totally over my head. Wonder if the Phosphodiesterase enzyme mentioned is in any way related to the phoshatidylserine supplement that comes up on the boards occasionally related to cortisol levels?

 

I am thinking the PDE11A identifies the location on chromosome 2.(?maybe). I hope that puts your girls and their dad in the clear for any of related Carney things that might show up because of related abnormalities on chromosome 17. What they are dealing with is harsh enough.

 

Thanks.

 

I am going to have another go at the article after I coffee-up..may have to perk an urn full.

 

den

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