Gynecomastia and Testicular Cancer...

[student]

Hi Guys, A little while ago, I was worried about the fact that mild-moderate gyne can be linked to testicular cancer so I went to the doctor. I couldnt work up the courage to tell about my gyne situation though, but I got tested for testicular cancer. Luckilly I was fine and there was nothing there... but have any other of you guys been in this situation and if so how long did it take you to work up the couage to let the doctor know?? thanks.

[Worrier]

As soon as my gyne appeared I went to the doocs. But you see I have a regular gp who I get on with and is a family friend. So it is easier for me.

In my experience the vast majority of doctors are understanding now about this and you will find it is a bit of an anti-climax as soo many men have this for a variety of reasons to varying degrees.

My doc just said his were bigger than mine and should we start a support group? .Once you have been I bet you will feel better  as  it is good  to talk to someone.

[ruggedtoast]

About a year. Going to the doctor was an enormous relief - not only to get the gyno issue off my chest but to find that there was nothing wrong with me anywhere else.

[Paa_Paw]

If you really have trouble getting the words out, List any questions you may have on a slip of paper.   Next time you see the Dr., Just give him the list.  Let the Dr. take it from there.  Once the door is open, it gets easier from then on.

[Hypo-is-here]

Excellent advice Paw Paw.

[Hypo-is-here]

Testicular cancer is only causative aetiology in  1-2 percent of all gynecomastia sufferers.

Given its serious nature it is something that should be sensibly ruled out by the physician.  What is interesting is, if all men with gynecomastia underwent evaluation we would actually discover 16% of all testicular cancer sufferers.

We would find the 1 in 250/350 of those people with Celtic hereditry who are born with the life threatening Hemochromatosis.

1 in 500 men that has Klinefelters Syndrome.

The 1 in 1500 men who have Kallmans syndrome and other more rare mosaic chromasonal abnormailties.

In total we would find the 10% of all men that have underlying hypogonadism.

We would also find the 8 percent of all sufferers who have hepatic problems

We would find 2 percent of men that have reanl problems.

We would find the 1-2 percent that suffer from thyroid disease.

We would also find many of the men who suffer from the rare cancer in men, breast cancer- as 40% of men that have breast cancer have gynecomastia.

When all said and done when you add up all the differing problems.

25 percent of all men who have gynecomastia have one underlying causitive condition or another.

Which is why I have allways argued for a full endocrine evaluation for men with gynecomastia and why I will continue to do so

Is this you, Hypo? Are you back? Where the hell have you been?  

Yes it is me I have been otherwise engaged.

The most productive use of my time, the best way I can help people is to spead myself across a number of groups and address those that I feel I can help most.

In this way I hope to avoid getting bogged down in some of the semantical long-winded debates that have in the past wasted my time and energy got in the way of what I have been trying to do.

[Hypo-is-here]

By 'gynecomastia sufferers', who exactly do you mean? Are you talking about the 'true' hormonal-gynecomastia group or everyone who even thinks (e.g. by asking them) they have gyno?
.

The statistics are from everybody who has presented themselves or has become apparent to an endocrinologist, irrespective of how bad their problem is, within a given period of time and thought to be representative of the wider picture by those in the know.

My math is a little rusty but could you explain how you arrived at that number? Just curious... and it would be good for my math.  
.

The number is arrived at in accordance with Ismail and Barths (The SAS Steroid Center, Department of Clinical Biochemistry and Immunology Leeds) 2002 white paper entitled Endocrinology of Gynecomastia which concured with the earlier findings of Glen D Braustein M.D Endocrinologist and the findings he published in his 1993 paper entitled Gynecomastia.

The figure is basically the large causes that I have denoted in addition to the smaller and less often found problems.  In fact I have just gone back and looked at the paper and my basic maths is out- (quite funny- maths is not my strong suit).

It is in fact 29% of all gynecomastia sufferers have an underlying causative condition.

Cirrhosis/Liver problems 8%
Primary Hypogonadism 8%
Testicular Tumor 3% (corrected)
Secondary Hypogondism 2%
Hyperthyroidism 1%
Renal Disease 1%
Others 6% (this is the title as they are many causes that add up to less than 1% each)

Total 29%

Does this mean for 75%, the cause is more or less unknown? There was a discussion going on around here not too long ago. Many thought the 'cause' for gyno was easily identifiable.
.

No it doesn't.

10-20% is caused by drugs.  I have read some papers that state that most of that percentage is made up by steroid abuse which is quite shocking and a good reason as if any were ever needed to not user steroids unless medically prescribed.  Heart medications, anti depressants, drugs that contain finasteride, amphetamines, marijuana and many other drugs are also known causes.  There are a lot of drugs out there that can and do adversely alter the male endocrine system and give rise to gynecomastia.

25% of cases are put down to the temporary hormonal surge that occurs during puberty.  That leaves 25% of cases that are labeled as idiopathic, where there is no discernable cause or to which the cause is not found.

Given that an individual may not be aware that he is taking a prescribed drug that is causing his development  of gynecomastia, or is abusing a drug that is causing his gynecomastia and probably needs medical help;

Well if you add this to the underlying medical conditions that cause gynecomastia we end up basically saying that 49% of people would benefit from endocrine investigations/pathology and the expert help of an endocrinologist that specializes in reproductive endocrinology.

Given that a number of boys going through puberty who develop moderate to severe cases, may be helped by intervening treatment by an endocrinologist following such investigations- this number is almost certainly over 50%.

Most importantly if you consider that the 29% of people that have an underlying condition, some of which are serious, a few that are life threatening;

It doesn’t take a brain surgeon to realize that society would benefit if all those with gynecomastia underwent endocrine investigations to determine the aetiology of their gynecomastia.

That is why I have argued long and hard for this.

It would seem that ALL of the reseach papers and studies back me up in my call, but for various reasons this is not happening on the ground where it counts.  

Whether that is through outdated thinking, ignorance of the latter reaseach and studies, a lack of knowledge of some of the conditions that are less well understood in the medical community as a whole (hypogonadism) etc or other additional factors such as cost efficiency etc it is hard to say.  

Perhaps the reasons for the lack of progress are multifactoral/a number of the above and then some.

As one person, it is monumentally hard to affect our medical institutions, their thinking or protocols.

What is much easier to do, is address those that suffer from the condition and inform them of the situation.

Knowledge is power.

By empowering people with this information I hope that they as individuals can push for what is in their best interests and in doing so maybe the system will change a little from the inside out.  At the very least, more people will be found to have untreated liver disease, hypogonadism, etc and as a result treated earlier.

And that can only be a good thing.

Just think If just one person reading this is one of those 8% who has primary hypogonadim and is 12 years old say, this might make them ask their Mom to make an appointment with an endocrinologist.  In doing that they can be diagnosed.  In doing that they can be treated.  This would mean that that individual would go through puberty something they would not otherwise do.

What if one of those 3% of people who has a testicular tumor listens to this and makes an appointment with an endocrinologist, that could be one life saved.

If any of this information positively impacts on one person via a diagnosis and treatment then I have been rewarded and the effort has been worth it.  

P.S

Gynecomastia for me as for a significant minority of men was a sign of an underlying condition.  I went 13 years without a diagnosis or treatment, because that warning sign was ignored.  My hypogonadism came about as a result of chemotherapy when I was 16.  If I had been treated earlier, I wouldn’t have the osteoporosis in my spine that I do now.

[BR_Guy]

We would also find many of the men who suffer from the rare cancer in men, breast cancer- as 40% of men that have breast cancer have gynecomastia.

Hypo, what do you think about this risk after gland removal surgery?

I mean, if the cancer grows IN the gland (I suppose), this risk take down once you get them out. Is this correct?

[Hypo-is-here]

First of all you have to remember that the risk of breast cancer in men is very low.  It only accounts for 1% of all male cancers, so you have to keep a prespective on this.

In terms of your question;

I have read in some medical journals that the risk remains post operatively.

You would expect the risk to be lower I know, but some say not.  Whether this is correct or not I cannot say as I am not medically qualified to and have not read enough medical papers on this one issue to have formed an accurate layman’s opinion.  

I would have thought that the number of men who have this cancer maybe so low as to preclude an accurate study within any one country, perhaps excluding somewhere like the USA and China.

The real factual answer to your question may not even be known.

On the reasons to why a risk may remain I can only speculate;

Given that surgeons cannot say 100% whether or not they have removed all of the glandular mass surgically and given that gynecomastia often occurs in those with elevated estradiol levels, and given that raised estradiol levels has been linked to increases in many cancers in men;

Perhaps the physical symptom of elevated estrogen (gynecomastia) is removed in many men, but the underlying estradiol level remains an issue?

As I say that is just speculation, a theory that would make plausible something that on the face of it doesn't make a great deal of sense.

Note that relates to the above reasoning/statements:

Transsexuals male to female on HRT to increase estrogen have a higher incidence of cancer than the typical male population as seen in studies and elevated estradiol is now thought to be involved in the development of prostate cancer.

P.S

So in short not much of an answer on that question.  Just a little of what I have read and a theory postulated that might explain how this could be so and little more.

[Hypo-is-here]

Graham,

I don't really understand why you like to make derogatory statements/implications.

I am not here to argue with you, I am here to provide people with good quality information that is hard to come by which may allow them to make informed choices about their own health.

What you have to understand is that endocrinology is a very big field and that their are many specialties/areas of interest within it.

e.g

Adrenal disorders
Cancer
Diabetes
Disease of pregnancy
Ectopic Endocrine Syndromes
General Endocrinology and Metabolism
Geriatrics
Growth Disorders
Hypertension
Lipid Disorders
Metabolic Bone Disorders
Neurosurgery
Obesity
Nuclear Medicine
Nutrition
Parathyroid Disorders
Pediatric Endocrinology
Pituitary Disorders
Endocrine Surgery
Thyroid Dysfunction
Osteoporosis  

Only Endocrinologists who specialize in reproductive endocrinology know much about androgens and estrogens and conditions such as hypogonadism and gynecomastia.

The rest aren't that much more knowledgeable than a general doctor.

The fact is I have had appointments with top endocrinologists in the UK, who have not specialized in this one condition where I have had a vastly superior knowledge in this area.

You might find that difficult to believe, it is nevertheless a fact.

You are not aware of something that I am going to tell you and it is this;

Many of the patients who have hypogonadism and are actively involved int he support groups in the US and the UK are far more knowledgeable on these matters than general doctors and half of the endocrinologists out there.

The reason for this is that the patients are on the cutting edge of an advancing field, whereas many general doctors only know a very little that they can recall from med school maybe ten years prior and don't come across these patients too often.  The more knowledgeable of these patients of whom I am one, have read all the important papers and published books an is upto date with the current thinking and concepts of those andrologists and endocrinologists who are pioneers in this field.

Because so many men with hypogonadism have been let down by poor outdated thinking and treatments, many of us have been forced to acquire a very high level of knowledge and understanding in order to seek out those doctors and treatments that have been able to help.

Here are just a few examples of exchanges that I have had with general endocrinologists that did not specialize in reproductive endocrinology.

Hypo
“Doctor my testicles appear to have become smaller on testosterone replacement therapy”.

Dr B
“I think that is just psychological as that isn’t something that can happen”.

FACT

When someone takes testosterone replacement therapy, It is recognized by the Hypothalamus, the Hypothalamus downregulates GnRH in doing so it instructs the Pituitary to downregulate LH and FSH.  This in turn results in atrophy of the leydig and steroli cells and the testicles physically shrink.  This process is not permanent and can be reversed by removal of therapy.

Dr D
“Although it appears as though you have a low testosterone level, because you also have a low level of SHBG you are ok, your free androgen levels are fine as seen by your high Free Androgen Index”.

Hypo
The FAI or Free Androgen Index was created for use in women and is not regarded as being useful or sound in men.  This information is from the Endocrine Society of Australia, who refuse to use this theoretical calculation.  The United States also refuse to use it as they too see it as unsound and instead prefer to test for free testosterone by what is deemed the gold standard of assays, equilibrium dialysis.

FACT
The above endocrinologists wanted to take me off treatment, but I persuaded them otherwise once I explained the facts and how the thinking was flawed.  I obtained a free testosterone test (something very hard to get in England) and sure enough my crucial free testosterone test was indeed low.

Dr C
What is the point in testing for estrogen

Hypo
The point is that if it is high it can be treated and should be treated for all manner of reasons.  One of which is to prevent the gynecomastia from getting worse.

Dr C
We can just give you a masectomy for that.

Hypo
First of all a masectomy is a procedure for women and is not something that should be considered for men with gynecomastia, secondly if the estrogen level remains high then the gynecomastia could grow back post op.

Dr C
No it can’t that can’t happen.

Hypo
Really well I know of dozens of men where this has happened, I have seen the pictures of multiple procedures carried out on men- something I am aware of because of various support groups.  Also I have been in contact with the New England Journal of Medicine and have in fact read most of the papers that have dealt with the aetiology of gynecomastia for the last 20 years and all of the experts in this field have detailed that re-growth can and does occur in men who have an untreated causative condition.

I could go on and on and on!

But perhaps you just think I am a little peculiar and I don’t know what I am talking about?

Ok I can see how you may think that.

Please register here

http://health.groups.yahoo.com/group/hypogonadism2/


This is a support group for hypogonadism and at it you can ask questions regarding the general knowledge of your average doctor and general endo when it comes to androgens and estrogens.

See what answer you get from the horses mouth.

Go and ask questions and see how knowledgeable people have found doctors to be who don’t specialize in this condition.

There are over a thousand members at that site, go and get a consensus and see what they have to say!

I have just changed treatment and I had to tell my doctor what it was she was injecting and what the correct dose was.  Also in asking for blood tests I asked for all estrogens to be tested for.  She said she could only test for Estradiol as she didn’t know what the others were.  I had to tell here to put Estriol, Estrone and progesterone on the form (and she specializes in family planning).

When it comes to hormones, excluding those who specialize in this field some of the patients involved in the support groups are THE most knowledgeable people when it comes to the subject.

I am aware and understand all the workings of Eugene Shippen and Malcolm Carruthers and of the latest treatment protocols, I understand the pathology etc.

That cannot be said even for most endocrinologists.

But like I said don’t take my word for it, go and garner the opinion of over a thousand men with hypogonadism.

P.S

If you find one factual mistake in anything I write I will be only too pleased to discuss it, but please don’t make derogatory remarks without good cause.

I am trying to help people, please don’t get in the way of that.  There doesn’t have to be an argument between us, in fact I don’t want that.

[Hypo-is-here]

If I have misunderstood you, I apologize.

The fact is I am glad it is just a misunderstanding as I certainly did not want an argument.

Graham, it might be worth you registering and asking a few questions at the site I left the link for.

I think you might be a little surprised at how very often with these conditions it is the patients themselves along with the real experts in the field who are in advance of general medical opinion which follows on a few years behind.

Of course that is upto you.

I definitely think that all men with gynecomastia should receive a proper endocrine evaluation from an endocrinologist that specializes/has an interest in this reproductive endocrinology.

I think the statistics of the differing aetiologies show this to be sage advice.