So I found this [Archive] - Intersex Community Forums

JOS

11-09-09, 05:20 PM

http://www.rch.org.au/publications/CAIS.pdf

haven't managed to read it all yet but there was a really good bit with diagrams explaining how the "neutral stage in both males and females" changes in the prescence/absensce of androgens (response to androgens).

then it had a bit about MIS
"The same thing happens in females with CAIS: their testes produce MIS which prevents development of the uterus, fallopian tubes and the upper part of the vagina."

and it shows the male bits.... but it doesn't show what you get when you have CAIS or PAIS.

so my question is (if anyone here knows?) would I have had any "duct" material? which connected to my testes?
I was told I don't have a prostate so don't need to worry about prostate cancer.... but is that just me or is the prostate created due to androgen response?

cheers
Jos

Aseras

11-09-09, 05:44 PM

You should have some sort of remnant. The prostate is formed with what is left of the mullerian structures, what would become a uterus or fallopian tubes. AMH or MIS would turn those off so they would default to the male form however Testosteorne and DHT is necessary to fully develop the prostate and the other "male" parts early in development. I would assume you have some kind of remnant, just a very hypoplastic underdeveloped one.

Have you ever asked your doctor to consider an a vaginal or rectal ultrasound to look?

JOS

11-09-09, 05:49 PM

I have CT scans regularly and he said he'd looked at them and concluded that I don't have a prostate
But he couldn't explain it as well as you just did

Thank you :smile:

Aseras

11-10-09, 08:26 AM

Why do you have CT scans regularly? You know each CT is the equivalent of getting 20-100 xrays? Abdominal CT's have the highest radiation levels too. That much radiation alone can give you cancer... anyways

CT scans are quite poor at looking at small soft tissue structures. They are after all xrays, and are very good at seeing dense or hard tissue like bone or calcifications. MRI's are much better for soft tissue, but again it depends on the type of MRI ( there are different kinds, bigger magnet, better resolution ) and the contrast they use and the type of scan taken to visualize things. I picked a very good MRI place with a very high resolution machine to have my pelvic and abdominal MRI done. It costs 4 times as much as a normal MRI though ( $600 vs $150 Out of pocket via insurance ). I also apparently have to sit inside that machine for nearly 2 hours, vs 15 minutes with the cheaper lower resolution one. They are ridiculously loud and crampt. Still even the best MRI can't see things much smaller than a few millimeters well. One of the tricks they use is to do a type of scan that shows the contrast in the blood vessels as that stands out really well and they can see the bloodflow going to things that may not be apparent or visible in the scans alone. It's good for tumors and high bloodflow areas, like the reproductive organs and such.

I don't know if you have an option with NHS to try and MRI, or to shop for a good MRI, or how long you might have to wait. Something to look into perhaps.

JOS

11-10-09, 02:41 PM

The remaining testicle had a malignant seminoma contained within it.

(re-cap... I got made redundant - had to sell my house and move - got a hernia (lifting stuff) on the same side as my scar from when I was 12months old - turned out they knew I was CAIS as a baby but put the testicle back again - the guy who took the other one out @<hidden> (telling me it was a 'benign ovary-like structure' but was fibbing to ease my mental state LOL) didn't bother to take the other one out and there it was getting all cancerous - my brilliant body ejects it - here I am :-D )

There was the option of having a series of chemotherapy or possibly even radio therapy but my oncologists suggested that because it was caught quite early the chances of it having metastasised, before they removed it, was low.
Instead they suggested monitoring me closely. I decided to go for it because chemo would have basically written off 6months and radio could have caused big problems when I reached 60-70.... plus I could always opt for them if it had spread.

So I've been on programme of scans and x-rays with blood tests for cancer markers since 2006. It started with 3 monthly, then 4 monthly and now 6 monthly intervals... I am nearly at the yearly phase and then I'll be given the all clear.

Added to that, I got referred to an endocrinologist who organised a bone density scan... apparently I'm more dense than an average woman my age :-D
which I thinks means I can say - I am officially "big boned" :-D

I was concerned that if I did have a prostate or a remnant, that it might be effected by testosterone HRT and that was really my reason for querying it.
They said they weren't concerned and couldn't see any evidence on my scans that I had one.
PLEASE don't tell me I've been fobbed off again :oops:

I've been trying to find out about what health checks I should get... e.g. how regularly should I have bone scans
mainly because if I know about things, I can ask for them
when you're not even told the details of your condition you're completely in their hands and have to rely on them remembering to check stuff
or thinking of things... e.g. if your testosterone levels have just dramatically altered and you feel like crap, could the two be linked????

sorry for the lengthy post, I don't mean to sound whiny...
I'm doing pretty well in fact, all things considered
and I know full well there are many many more who've had it a lot worse
... like that guy in another thread said - CAIS isn't all THAT bad comparatively... even if I do need to be reminded of that sometimes :wink:

spacegirl

11-10-09, 03:04 PM

Oh JOS, I really feel worried for you now. :(
One thing though, I think maybe if you've ever had testicular cancer and worry about a prostate, testosterone is the last thing you should be taking. If there were a stray cell in there somewhere, testosterone would only encourage it to grow. Your cancer cells might not be as androgen insensitive as the rest of you.

JOS

11-10-09, 03:08 PM

Yeah it worried me too :smile:

thank you for being concerned for me... I have to be honest, there are days when I wish it was all over... you know... over

it can be hard to find "meaning" sometimes escpecially when you get the feeling it's all guess-work and :magic-2:

but this all started back in 2006 and I'm still here... so far

JOS

11-10-09, 03:11 PM

hey, at least I'm being monitored at this point.... if the "T" does stimulate something, it's more likely to be caught now

spacegirl

11-10-09, 03:23 PM

hey, at least I'm being monitored at this point.... if the "T" does stimulate something, it's more likely to be caught now

It wouldn't be better to skip the risk entirely by trading the testosterone for something else?

JOS

11-10-09, 03:39 PM

From what I'm told, that's exactly how they'd treat a man who had had testicular cancer?

My oncolgist seems sure it's not a risk and the only down-side to me replacing the testosterone is that it will simply have no effect.

but I am not alone... other CAIS women take testosterone HRT too
can't find the link right now but it's there somwhere

but you're right... only time will tell... you'll have to tune you dreams in for me and let me know how it'll turn out

notodd

11-10-09, 04:12 PM

I have to be honest, there are days when I wish it was all over... you know... over

I am concerned for you too. Please know that there are people that care about you and wish you well.

Jon.

JOS

11-10-09, 04:24 PM

Thanks Jon, that's kind of you

sorry to hear you feel that way too.

:grouphug0

JOS

11-10-09, 05:06 PM

Sounds like there's more to this MIF than meets the eye

Mullerian Inhibitory Factor (MIF), Mullerian Inhibitory Hormone (MIH), Mullerian Inhibitory Substance (MIS) or Anti Mullerian Hormone (AMH).

I'd never really looked into it before but apparently it's all down to MIF that CAISers don't have a ute

plus apparently some AISers can have fragments of uterus, tubes etc.

also has anyone else posted this from September 21, 2009

'Hormone replacement therapy study raises lung cancer fears'

http://www.theaustralian.com.au/news/nation/hormone-replacement-therapy-study-raises-lung-cancer-fears/story-e6frg6nf-1225777246084

notodd

11-10-09, 05:34 PM

Jos.

Why is it that you can get this information from Australia, but not from here?

By the way, I was quoting what you said.

Aseras

11-10-09, 06:19 PM

If she is totally CAIS or neaerly so Testosterone isn't going to matter, no cell in her body can use it. It will just wander around and either convert to estradiol or get eaten by the liver.

Why not take estradiol? The only benefit I guess I could see to taking T and letting it aromatise is that the testosterone is going to push SHBG down really low ( even with CAIS as the SHBG levels and other factors are the result of the metabolization of testosoterone by the liver and the secondary factors that are released that control red blood cells, platlets clotting factors and other such things), below normal male levels. Estradiol HRT would make those rise to female levels and your blood counts would change too, 4-5 times male levels and much of the hormones, more of the estrogens would end up bound and do less work.

fraulein_Maria

11-10-09, 06:24 PM

I was concerned that if I did have a prostate or a remnant, that it might be effected by testosterone HRT and that was really my reason for querying it.
They said they weren't concerned and couldn't see any evidence on my scans that I had one.
PLEASE don't tell me I've been fobbed off again :oops:

>>> ok hon. first please calm down. I know your scared but there is good reason you shouldn't be... though not for the reasons you've been told.

first, PM me and we'll talk about how you can feel (or your husband can) your prostate if you have one.

next, although you may have one (i do, why shouldn't you?) i'm not terribly worried about getting cancer of it, as i am of getting cancer of other tissues... and that comes from knowing what makes the tissues vulnerable in the first place.....

Our gonads are especially vulnerable, because in the course of making "germ cells" (sperm and ova) the cells not only divide rapidly, but they differenciate from the parent... 2 things that cancer cells do aswell. It is the sertoli cells, not the leydigs that become cancerous in a testi for this reason.

the cells of a prostate have a large number of androgen receptors. If you have one, it will grow larger if you are a PAIS. If you are CAIS as in "i aint got hardly any receptors" it should grow very little, IF AT ALL. :)

My risk of prostate cancer is higher than yours. I not only have one, but i have produced tons of T over my lifetime... far more than any non-CAH woman, and also more than other CAH women.... because it took so damn long to get dx'ed and treated.
What has me less worried these days is that since i've been treated, some of my tissues have SHRUNK. With no T to keep them large, they have returned to "normal" size. On the very off chance that you have ANY FUNCTIONAL androgen receptors in a prostate, simply cutting back on the T will cause it to shrink.

But lets be reasonable

How old are you?

Even men with normal sized prostates, normal T level, and normal (and normal amount) androgen receptors don't really have to BEGIN to worry about there prostate until..... 50... when it starts getting a little bit larger... quite benignly.

Your just a wee babe of a lass! Get a few more DECADES under your belt love before you worry yourself to death. :)

Besides, the other choice is to go on artificial estrogens that will give you breast cancer ALOT faster.

The T makes you "feel like your old self" which is the best reason to do it. If that changes......

you get FAT, you get ORNERY, you start losing sleep because you have to pee several times a night...

THEN switch :)

and then start feelin your breasts for lumps.

because you wouldn't be JOS if you weren't paranoid about SOMETHING! :)

JOS

11-10-09, 07:05 PM

because you wouldn't be JOS if you weren't paranoid about SOMETHING!

scary how well you know me, lovely :grin: thanks fraulein_Maria, you're a complete star

If she is totally CAIS
yeah... thanks for that... I am here you know... :grin:
I am CAIS according to the geneticist not high grade PAIS. plus the mutation has now been traced in my family.

And I still take estradiol valerate as I have done for many years

the thing is.... I'm not a normal woman... I used to have high testosterone levels and now my diligent endocrinologist has looked through my notes, I know how high.... so now I know what I'm aiming for... (guess what... still not hairy)

http://www.medhelp.org/ais/32_GDCTOMY.HTM

...of course I also know that they knew the testicle was still there :mouth_clo mmm good of them to let me know huh?

cos I'm pretty sure they didn't plan for it to be there due to their 'remove but don't tell' policy

fraulein_Maria

11-10-09, 07:15 PM

[QUOTE=JOS;21435]scary how well you know me, lovely :grin: thanks fraulein_Maria, you're a complete star

>>> that's what you get for putting up with me. :) <<<

yeah... thanks for that... I am here you know... :grin:
I am CAIS according to the geneticist not high grade PAIS. plus the mutation has now been traced in my family.

>>> to me, that's GOOD news :) nice to know that another Josicles will appear in a generation or so... hopefully soon enough so that you can be the aunt she needs very badly... that you needed, but didn't get. As a result, she will be what you could have been if your parents had been more truthful, and willing to fight your doctors....

I see a CONFIDENT as well as smart and beautiful woman...

A woman that you can be EXTREMELY proud of.....

And hopefully, you will see yourself in her.....

And know just how fabulous you really are :)

spacegirl

11-11-09, 12:07 AM

If you are completely insensitive to androgens, why should testosterone make you feel any differently, or effect you any differently, than the estrogen the testosterone turns into?

spacegirl

11-11-09, 01:40 PM

JOS,
testosterone is converted into estradiol (by aromatization) so inefficiently that under normal circumstances for one to have a healthy estrogen level one must either be obese or have testosterone high enough to risk liver damage.

So I went looking to see if aromatization works any better for those with ais, and I found this. http://www.ncbi.nlm.nih.gov/pubmed/1769135

They appear to be saying that those with truly complete androgen insensitivity never aromatize. That lack of aromatization could be used as a test for who is complete versus who is partial.

This seems to imply that either you aren't getting the estrogen value you think and you aren't being helped by the testosterone, or else you aren't completely insensitive at the cellular level and the testosterone presents a cancer danger.

Of course, I'm often wrong.

JOS

11-11-09, 03:26 PM

I'm not using T instead of E

I take climoval for E and my levels are the same now as they were before they removed my right testicle

What I was told on Wednesday last week is that my T levels were at "20" before the op - which I'm told is a normal male level
post op they dropped to a level that was below the normal female level and since taking the T hrt, my levels are at "11".... somewhere between a normal male and female level
(Sorry no units of measurement, I usually write everything down but forgot this time)
My liver function is just as it was... healthy
my weight is just as it was before the tumour developed (I rapidly lost a lot of weight just before the tumour was found but have since put it back on)... a little bit fat but definitely not obese

what can I say... maybe the effect is all placebo... maybe we don't know everything about the effects T and how hormones affect mood???

All I know is that when I don't apply T I feel different than when I do... even my husband can tell when I've missed it for a few days!

and I can completely relate to the comment in the link I posted... the bit under the heading "Does it do more harm than good?"
to just remove my testicle and not even bother to monitor what effect that has, seems a bit daft to me....

massive change in T - massive change in mood ----> could the two be linked?
:brick:
this is what made me think I could be severe AIS not CAIS... the the genetist I saw seemed to think I am CAIS.... but frankly... "do I look bothered"... no!

I'm not suggesting anyone else should take T and I have no idea why or how it helps... all I can say is that I do and it does

jos xy

Aseras

11-11-09, 06:25 PM

While you may not use T directly again the metabolites and other things downstream of T could have a great effect. Does your bloodwork, hematocrit and RBC and other cell counts look more in the male or female range? Have you ever had your SHBG level checked? Those can have a great influence on your feelings and mood. There are a lot of complex things going on. While you cannot use the T directly, there are other things it can influence indirectly that you may be seeing the benfit of and I bet no doctor has even thought of this.

spacegirl

11-11-09, 08:40 PM

I didn't mean to distress you JOS. So, just out of curiousity, how does testosterone make you feel?

Aseras

11-11-09, 10:31 PM

T aromatises very easily to E. It is just that normally 99% of T is bound and only the free testosterone can aromitize to E. Even the estradiol made by the ovaries in a woman starts off as HUGE amounts of testosterone and other androgens and is merely "captured" by the granulosa cells that are highly expressive of aromatase and they convert almost all of the androgens into estradiol. PCOS is where that process fails and the result is a cyst of those cells and they "leak" the testosterone, and other secondary hormones due to a fault in the conversion.

If you think about hormones levels. The normal range for tesotsoterone for a male is 250-900 ng/dl or 2500-9000 pg/ml Ehe normal range of estradiol for a female is 80-500 pg/ml. The estradiol is WAY more potent and it isn't bound to SHBG irreversibly like testosterone is. If a lot of testosterone is free and cannot bind, it's going to convert to estradiol.

There's a study here http://jco.ascopubs.org/cgi/content/full/22/13/2546 of casodex/bicalutamide which is a unique Anti Androgen in that it blocks the recptors but does not inhibit production. I've mentioned before it is essentially a chemically induced form of AIS. Testosterone levels double or triple when taking it, and the estradiol levels rise significantly as well. Take a look at figure 1 in the study to se it.

spacegirl

11-12-09, 12:24 AM

T aromatises very easily to E. It is just that normally 99% of T is bound and only the free testosterone can aromitize to E.

Hi Aseras,
If you look at the link I previously included, they said that pais results in reduced aromatization and cais in no aromatization. From their description, it sounds like it was done in a testtube or a petri dish, so it wasn't a case of low free testosterone, it was all free.

Even in the normal people who aromatize the best, stacking steroids or being morbidly obese only gets an estrogen level in the very low 100 range. Not much.

fraulein_Maria

11-12-09, 10:38 PM

[QUOTE=spacegirl;21441]If you are completely insensitive to androgens, why should testosterone make you feel any differently, or effect you any differently, than the estrogen the testosterone turns into?

>>> because fatty tissues (like the brain) do not need receptors to be affected by steroid hormones... which are complex lipids (fats). the testo-gel or an estrogen patch, the hormone GOES RIGHT THROUGH THE SKIN... because it too, is fatty tissue. <<<

fraulein_Maria

11-12-09, 11:10 PM

[QUOTE=spacegirl;21443]JOS,
testosterone is converted into estradiol (by aromatization) so inefficiently that under normal circumstances for one to have a healthy estrogen level one must either be obese or have testosterone high enough to risk liver damage.

>>> that's not true of AIS'ers. in time before Money et al... AIS'ers kept there testis there whole life long.... only 2% ever got cancer... the same risk as there brothers... but no one is castrating them prophylactically.

They have lived healthy complete lives BECAUSE they kept them. Because of them: they grew tall, entered puberty, became women.... women who look more stereotypically female than you and i EVER will... pear-shaped with large breasts and hips.....

Hence the old name of it..... TESTICULAR FEMINIZATION <<<

So I went looking to see if aromatization works any better for those with ais, and I found this. http://www.ncbi.nlm.nih.gov/pubmed/1769135

They appear to be saying that those with truly complete androgen insensitivity never aromatize.

>>> not true. if it were, completes (and we know they are completes) who have kept there testis would never enter puberty and they most certainly do.<<<

That lack of aromatization could be used as a test for who is complete versus who is partial.

>>> not true. the test currently is observing a tissue sample for sensitivity to testosterone, and it is highly accurate.

Thankfully, the practice of castrating them at birth has ended, and the practice of doing it in there adolescence is ending.

Its ending because thankfully, TC is RARE among completes, and ones own natural hormone almost always does the job better.

JOS is part of that 2%.... which has me sad for her.

BUT if she were my own daughter, i'd simply have been on her doctors buttocks about monitoring her..... so that she could have kept them as long as healthily possible.....

Just as i fought the doctors who wanted to burn away my daughter's "extra tissue" with caustic cream.....

the bastard's cut me, and left me with a lifetime of physical pain because being a prader 2 was unacceptable to them....

TOUGH

It's MY body. How dare you cut me, my daughter, my friends....

when men use a glass bottle... its called "child rape"

when women use a pottery shard... its called "female circumcision"

but an educated greedy misogynist with a scalpel?

spacegirl

11-13-09, 03:50 PM

fraulein Maria,
You seem to be yet another person who disagrees with my summary of the research abstract I posted a link to, apparently without even reading it. I was hesitant to quote directly, because the laws concerning intellectual property are strange, but here goes ...

http://www.ncbi.nlm.nih.gov/pubmed/1769135

RESULTS: Following a 48-hour preincubation with testosterone or dihydrotestosterone, there was a five to six-fold stimulation of aromatase activity in normal fibroblasts. Mibolerone, a synthetic androgen, produced similar results. The stimulatory effect was blocked by anti-androgens. Seven patients with partial androgen insensitivity, of whom four were either receptor deficient or showed a qualitative defect in androgen binding, had reduced mibolerone induced stimulation of aromatase activity. All ten patients with receptor negative complete androgen insensitivity had an absent response. There was no aromatase induction in a further three patients with complete androgen insensitivity who were receptor positive. Two siblings in the latter group had an exon deletion encoding for part of the DNA binding domain of the androgen receptor.

CONCLUSIONS: Androgens stimulate aromatase activity in genital skin fibroblasts from normals. The response is mediated via the androgen receptor and can be decreased or absent in patients with the androgen insensitivity syndrome. This may be a useful in-vitro marker of androgen responsiveness in such patients.

You equate skin and fatty tissue androgen response yourself, which combined with the actual research I linked to means that cais women don't aromatize at all.

>>> because fatty tissues (like the brain) do not need receptors to be affected by steroid hormones... which are complex lipids (fats). the testo-gel or an estrogen patch, the hormone GOES RIGHT THROUGH THE SKIN... because it too, is fatty tissue. <<<

But aromatization is not the only way for a pre-orchiectomy cais woman to get estrogen. All testes, even normal ones, produce an amount of estrogen. They must, because sperm require it in order to survive, and they do beyond what's necessary because nothing in nature is perfectly tuned. If you multiply that amount of estrogen by a huge factor of testicular overstimulation present in a cais woman's body, then that might just account for any estrogen levels seen?

Also, I summarized that they were proposing that lack of aromatization could be a test for cais, not that it was the standard test. Those are two different things.

Aseras

11-13-09, 05:26 PM

Sertoli only syndrome is similar. It has been proven though that CAIS get their estrogen through the aromitization of the higher levels of testosterone.

The key word in that artilce is induction. It means that aromatase isn't upwardly expressed. Aromaitization is how ALL estrogen in the body is created. It is the only process. They are aromatizeing, just not normally, as would be expected. Normally aromatase is expressed and when activated it is then upregulated ( increased output and functionality ).

There's a lot more things invloved in how the cells work. FSH greatly increases aromitization expression, and thus most AIS'ers have MUCH higher FSH and LH levels than normal since their body is "blind" to the majority of their sex hormones, the androgens. They merely keep producing testosterone until the secondary estradiol prodcution via aromatizations is high enough to satisfy the feedback loop, or until the testes in essense overdrive themselves and go cancerous from running all out trying to meet the bodies demands.

There's a study here on aromatase activity and the fsh and androgen induction http://endo.endojournals.org/cgi/content/abstract/109/4/1303
I don't know if you can see the whole article outside of the university.

fraulein_Maria

11-13-09, 07:00 PM

[QUOTE=spacegirl;21487]fraulein Maria,
You seem to be yet another person who disagrees with my summary of the research abstract I posted a link to, apparently without even reading it.

>>> as a matter of fact i did, i simply disagree with the conclusions. I've been studying AIS for some time now and have found that most studies on them to be quite flawed.... some of them glaringly so. for instance, there are 4 major studies on AIS'ers and testicular cancer.....

3 of them are garbage because they included several people in the study (who weren't controls) who did not have C-AIS or even PAIS, but other completely unrelated IS conditions. apparently the researchers thought that anyone with a "Y" chromosome and a feminizing IS condition would do...

Garbage In: Garbage Out

The 4th study had only completes in it and discovered that AIS'ers had no greater TC risk than there brothers.... @<hidden>%

Sadly, until recently, that study had little attention paid to it. Too many doctors were making too much money scaring AIS'ers into being chopped up when it was not necessary for anything but a doctors bank acount.

Until recently... because a bunch of other IS people and ME began objectly loudly on-line to the practice of slicing and dicing us.

We aren't buying the doctor's BS anymore. We have been lied to far too often to take ANYTHING they say at face value. <<<

and I was hesitant to quote directly, because the laws concerning intellectual property are strange, but here goes ...

http://www.ncbi.nlm.nih.gov/pubmed/1769135

You equate skin and fatty tissue androgen response yourself, which combined with the actual research I linked to means that cais women don't aromatize at all.

>>> :umno: aromatization does not occur ONLY in the liver.... it also occurs in fatty tissue. this salient fact appears to be missing from the study....

garbage in: garbage out <<<

But aromatization is not the only way for a pre-orchiectomy cais woman to get estrogen. All testes, even normal ones, produce an amount of estrogen

>>> but not enough to account for a spontaneous puberty. Just as ovaries normally produce an amount of testosterone.... but not enough to spontaneously cause more than andrenarche... certainly not enough to masculinize a XX body... something far out of the ordinary... like CAH :) <<<

They must, because sperm require it in order to survive

>>> can you verify this? <<<

If you multiply that amount of estrogen by a huge factor of testicular overstimulation present in a cais woman's body, then that might just account for any estrogen levels seen?

>>> first, what's being over stimulated is far smaller than a man's testis... they are compensating for there small size. they produce much higher testosterone levels during puberty, but not other times. they do not produce more estrogen as you assume.

we as CAH's produce more of the other adrenal hormones and as a result experience adrenal hyperplasia: AIS'ers do not experience an increase in testicular size. Apples and Oranges. Us CAH's and AIS'ers are OPPOSITES in almost every way imaginable except 2 that i know of....

We are both smarter than the average bear ;)

We are both women in every way that matters :)

Kailana

11-13-09, 08:27 PM

HEy Jos just wanted to say thanks for sharing all you did in this thread. I worry abit over the repeated ct scans, i have had 3 within the last 2 years and I worry over those as too many ct scans can cause issues. I am wondering if your doctors have ever thought of adding in a MRI looking at the same areas just incase, as an MRI sometimes will show things that a CT might miss? MRI is also a but safer. Was just wondering if you would get a little better understanding of what is inside.

I am also curious if you have requested copies of all your ct scans? The whole issue you have with wondering if you have a prostate or even just a remnant left should be easily seen with either ct or MRI. ultrasound should work as well but well technicians can skip things if there is a remnant too small too see with ultrasound.

for fraulien_maria, I am real curious about the 2% TC risk of CAIS women, I dont recall seeing any newer studies with a reported findings that low? Usually what they say is for CAIS women TC cancer risk is anywhere from 25%-35% and the 2% usually reported for XY/XO Mosaics <---that does not include those with Disgenetic gonads, ie streak gonads are always removed but those with normal appearing testes the % of TC found in removed testes is only 2%. <---that is one of the lower risk categories for TC to my knowledge stated about the many different intersex conditions. So if you can share a link I would deffinately appreciate any newer information, or validation that the older 25%-35% is an overestimate that is being used to get parents to approve of gonadadectomy.

thanks.

fraulein_Maria

11-14-09, 12:18 AM

[QUOTE=Kailana;21493]

for fraulien_maria, I am real curious about the 2% TC risk of CAIS women, I dont recall seeing any newer studies with a reported findings that low?

>>> actually its not "new" just newer than the other 3. i believe the link is posted in the TC thread we had last year (or was it earlier than that? i forget) anyway, its here... if you use the forum search feature. <<<

Usually what they say is for CAIS women TC cancer risk is anywhere from 25%-35%

>>> those are the old studies in which they included Klinefelter's (XXY) in the mix. never mind that in addition to having androgen receptors, they are also usually treated with WAY TOO MUCH "T" ... like enough to give an elephant cancer <<<

JOS

11-14-09, 04:36 PM

There's so much knowledge amongst us (well you lot anyway :smile: ) it's scary
I really value the points people have made and it certainly gives me a lot to ponder

just to answer a few direct questions

I didn't mean to distress you JOS. So, just out of curiousity, how does testosterone make you feel?

back to normal :smile:

without I feel kind of "running on empty"

no energy, no sex drive, tearful, sensitive (in more ways than one).

Also, I find my insomnia gets worse.... but that could be incidental??

plus I put on weight... but then again that could be because I felt more tired so exercised less and ,perhaps strangely, I felt hungry all the time?

I am also curious if you have requested copies of all your ct scans?

I kept asking my oncologist if I could see them and he said a number of times that "next time" I could come and look over his shoulder at them but there was no other way of seeing them.

When I went along for the lastest appointment (Monday just gone) I found out that I CAN GET THEM ON A DISC which was never mentioned to me, I happened to go along to the scanning place and ASKED THEM if it was possible!!!

soooooooo, paranoid me is now wondering WHY that wasn't mentioned before???

Anyway :smile: thanks again

love to all
jos

Kailana

11-15-09, 07:17 AM

more then likely the doctor doesnt feel you need to see them.

you should be able to go to the medical records department and fill out a request for your images on disk, likely take a few days, but there shouldnt be any issue's with there being a reason for you not to have any copies of them.

oh and quick reminder I do feel that ultrasounds examinations can be helpfull to show just how much has been removed. personal experience again, sorry for adding this in, but I have found that both CT and MRI scans will not show the severed vascular bundles that are viewable with ultrasound. Ie contrast dye wont go down the severed ends so you cant see them with MRI and CT scans.

spacegirl

11-17-09, 04:21 PM

Er, JOS. I might be wrong, but it sounds like you're basically using the testosterone for sexual and mood effects rather than for a major health benefit. You already said you were taking estrogen anyways.

I saw a news-ish article about some stuff called fibanserin which might take care of those effects directly, without exposing you to the dangers of testosterone. I could post a link, but given that it's being touted as a sexual med for women, my posting a link might be considered spamming.

Aseras

11-17-09, 04:46 PM

she is CAIS, testosterone is virtually inert to her. She is just used to that feeling as that is how her body is used to feeling AND had been working fine until they discovered a tumor.

All the medical rules go out the window when you are an anomaly. They don't know how you will react. If she feels fine on it, then there you go.

Kailana

11-17-09, 06:52 PM

hiya spacegirl I would think the link would be approriate for this line of chat.
Really only reason to remove links is when they don't have a reason for being included on this sight.

basically a link like that wont do any of any harm as long as we are able to learn from it.

spacegirl

11-17-09, 08:01 PM

hi Kailana.
The original article I saw seemed maybe a little too glowing, so I did a little extra research. It turns out that the antidepressant "wellbutrin" also does the same thing as fibanserin, they both do it by changing dopamine levels in the brain, which seems a little severe to me. They both may also result in loss of inhibitions and desire to gamble. So maybe I'll just say "nevermind". I wouldn't take it myself if I were in JOS's shoes.

Aseras

12-15-09, 12:25 PM

Another new report came out this week talking about how bad ct scans are

http://www.msnbc.msn.com/id/34420356/ns/health-cancer/

Aseras

12-15-09, 03:42 PM

Same article, but this one appears to be much more informative.

http://abcnews.go.com/Health/CancerPreventionAndTreatment/ct-scan-radiation-lead-29000-cancers-researchers-warn/story?id=9340190&page=1

Here's a really scary quote

For example, an estimated 1 in 270 women who undergo CT coronary angiography at age 40 will eventually develop cancer directly related to that scan, the researchers said; for men, the estimated rate was 1 in 595.

Risks were roughly doubled in 20-year-olds and halved in 60-year-olds.

A typical pelvic or abdominal scan is twice the radiation of that kind of scan. They have the highest radiation doses.