Prolactinoma...the Worse Case Scenario

[Guest angie]

Today...

I was given bad news,or as my doc said,"I have bad news for you Angie,really bad news.

You are going to have to stop taking estrogen,you have a Prolactinoma in your brain." Oh Joy.

I told her that I would rather die than to quit taking my estrogen.I cannot detransition,go back

to being who I am no longer.I would rather die a woman,then have to live life as a man again.

She said she totally understands and I would have to sign a release saying she is not responsible if/when I keep taking estrogen. I will find out if I do have a tumor soon,I will set an appointment

for an imaging center by my home.

All I Can Say is Wish Me luck,

Angelique

[Guest Donna Jean]

Oh my God, Sweetheart.....

This is too much....

You MUST get a second opinion on this ....it's way too serious for just one diagnosis....

My heart is breaking, Angie...I totally understand ...I was once diagnosed with a disease and given one year...I got another opinion and it was totally different from the first....that was 25 years ago....

Please, PLEASE look into letting another doctor have a look at it.....OK?

LOVE AND HUGGGGGS AND SUPPORT!

Donna Jean

[Guest Charlene_Leona]

Omg sweetheart you have to be so scared right now, has your doctor started you on any of the meds yet to treat this and has he ordered the MRI so he can see whether this is the common form or if its macroprolatinoma. If it's the later they will have to operate. Was it the blood work that caught it or did you start lactating?

If you need anything please feel free to ask we are all behind you , you know that we are. I also understand why you won't stop your estrogen, I wouldn't either for my heart problems. but since I've had the orchi there was no other option. You have to keep yourself positive through this, we are here for you.

I will be praying for you.

Charlene Leona

[Guest Anna_Banana]

But this can't be permanent, right? Can't they intervene and do something about the tumor so that you can continue to take estrogen safely?

[Carolyn Marie]

Angelique, sweetheart, I am so very sorry to hear about this. It is terrible news.

But I agree with Dee Jay, you must get a second opinion and get all the diagnostic

work done as soon as possible so you know for certain what your options are.

You are such a strong and positive woman, so I know you will fight this with everything

you've got.

We are all behind you and praying for you. Keep you spirits up, Hon.

Love and HUGS

Carolyn Marie

[Guest viv]

Hi Angie,

You and the other women on this sight accepted me ,an Irish woman into your friendship.

Then, a few weeks ago you all made me feel better when I found out about my diabetes.

No one can make me feel better now , not with that news . I just got as far as Donna Jean"s

reply and yes go for another opinion , I read her post cos I had no clue what to say to you.

I am thinking of you hun and I wont stop, how can I ? luv, viv.

[Guest Erin Quinn]

oh god Angie, yes please see another doctor or two. I don't know what to say but i'm sitting here so worried and sending out all the hope and support I can for you. You're so smart and beautiful and strong, and we're all behind you.

so much support and love, erin

[Guest foxy]

my heart goes out for you Angie, i would definitely look at getting a 2nd opinion, heck maybe even a 3rd, they say 2 minds are better then one, but what about 3? as far as i can think hormones had nothing to do with it, just a 1 in a million chance of a cell mutating during its split to make a new cell......bet you always wanted to win the lotto...... though i doubt it was ever meant to be this type of one.

be strong, and their is nothing you cant overcome. my boyfriends grandfather was diagnosed with canser and told he had a year to live, never received treatment or anything, now 22years later hes still alive and deifying all odds just because he wants to live, so never give in!!! try not to worry too much about it also... the more you worry the harder it is for your body to heal itself, and your body's gona need its full strength to take on the tummor.

with the doctors... their first jump is going to be to try stopping what ever your doing differently, when to be honist hormones wouldn't have any effect to my knowledge of creating a tumor, they don't in biological females why would it do it to us.

i'm hopeing for the best, Angie, stay strong

p.s sorry if my twisted seance of humor is misplaced, just trying to get some smiles in a time that is so dark

[Sally]

Dearest Angie,

Do not fear or panic over this diagnosis, seek a second and a third opinion - doctors do make mistakes.

I will tell you a story about an actress - it was Fran Drescher, when she ended the series "The Nanny" she was getting a divorce and when she complained of fatigue and general nausea and weakness she was told it was merely stress and a let down from the end of the series and marriage.

She went to a number of doctors each telling her the same thing until finally one thought it was something different - instead of stopping at the first possible diagnosis (fatigue and stress) he looked into other causes and found out it was Uterine Cancer, it had progressed enough during the seven months of hunting for the cause that it had to be removed but she is still alive.

The point is, don't just accept the first diagnosis, check it thoroughly and don't stop until you are sure of the results.

I will keep you in my prayers - I wish you all of the best of luck.

Love ya,

Sally

[Guest julia_d]

I don't understand the response of the doctor.. see a specialist.

http://endocrine.niddk.nih.gov/pubs/prolact/prolact.htm

[Guest yvonne]

Angelique Michelle,

You are one tough woman and you'll survive this test.

I am so sorry you have to. I can't add anything to what your trusted friends have said, except to say you have my love, my support and my prayers--with all my heart.

Your baby sister,

Yvonne

[Guest NatashaJade]

Angie,

I've only been here a short time, but I have read so many of your posts and admire you so much. Stay strong and keep your spirits up. I'll keep my positive thoughts flowing your way and I hope you find that this is not what it seems.

Love,

Gin

[Guest angie]

Ladies,

Thanks for the loving support,it really means a lot to me.

Funny thing is I have had a smile on my face the whole day.

I am a positive soul and this wont get me down.If anything it will

spur me to get the rest of this journey over and done with as soon

as I can this coming year.I am having a heart to heart with Dr G the

next time I see her.All I want is to make it through to being a complete woman.

I don't think it is asking all that much at all.

Bye the way,

One of my nieces is coming to town Friday for her grandmas funeral.

Ashley told my ex,her aunt, and my daughters,that she wants to come meet me

as her new aunt.She's just not sure what to call me.Mae said to call her what you have

always,uncle D...lol(I sure don't look like an uncle anymore) My ex told me that she said

to tell me I am a very pretty woman and is looking forward to spending some time at my

place.I could have a whole house full of young women pretty soon.(yay) I was very close to

all my neices and nephews when they were little until teens,and it seems to coming back to

me with the acceptance I am receiving from all of them.

[Guest ~Brenda~]

Oh Angie

I am so sorry.

I love you hon.

I hope that this is all just a mistake.

Love

Brenda

[Guest Melisa]

Angie;

I'm very shocked and saddened to hear about that. Yes, get a second and third opion as many of the women have mentioned in their posts, I'l be praying for you.

Love

Melisa

[Guest brenda lee]

Today...

I was given bad news,or as my doc said,"I have bad news for you Angie,really bad news.

You are going to have to stop taking estrogen,you have a Prolactinoma in your brain." Oh Joy.

I told her that I would rather die than to quit taking my estrogen.I cannot detransition,go back

to being who I am no longer.I would rather die a woman,then have to live life as a man again.

She said she totally understands and I would have to sign a release saying she is not responsible if/when I keep taking estrogen. I will find out if I do have a tumor soon,I will set an appointment

for an imaging center by my home.

All I Can Say is Wish Me luck,

Angelique

Angie I hope and pray it is all a mistake on the doctors part ,that they mis read something. You are in my prayers.LOL Brenda Lee

[Guest laura renee]

I am sorry to hear that Angie. Cannot say much more than the rest of the women have already and that you will be in our prayers and thoughts.

Laura Renee

[Guest Evee18]

My heart goes out to you honey. If you ever need help with anything we are all here for you. Just remember that as long as you have the will to live nothing can stop you. But, hopefully it might have just been an error in the tests. Doctor's make mistakes too so here's hoping. Good luck and I have my fingers and toes crossed for you.

[Guest doodle]

Angie, that has to be the worst news and trans women can get. I wish you well and that the doctor is wrong. I understand your decision about not stopping Estrogen. It is nice that you are going to have a house full of women .

with love

Kelly

[Guest Joanna Phipps]

My dear Angie

Serious though it is the cause seems to be supression of dopamine(its the chemical that supresses prolactin secretion). I dont know if you are on any dopamine supressors but you entire medicine history needs to be looked at. According to the link posted by julia its the control of prolactinoma is quite straight forward. The tumor is a benign, noncanceroous one so there is little concern of it spreading and there are many options for treatment.

I know this is a blow to you but I know that you are strong and can make it through. We will be here for you no matter what happens sis.

HUGS

[Guest angie]

So all will know it is not a mistake.

When our bloodwork is done it comes back with the serum levels

clearly stated.Normal prolactin levels should be a high of 12mg/ml.

Mine is 52,so something is most definently up.

This is why I stated I hate my yearly bloodwork,something always shows up.(grrrrr)

Angie

[Sally]

Angie,

I have long been trouble by the thought of some problem causing me to have to stop hormones - no basis just my worry wart personality.

I have come to a conclusion that it took a long time to embrace and that is to continue the direction that I have set for myself and openly become the woman that I am without HRT if necessary - you have developed the characteristics that you have desired - you are beautiful lady and most of those changes will not just reverse a few will but they can be dealt with.

You are that lovely lady inside and no amount of HRT has changed anything but your body if you must stop estrogen to live then do so - it will not end your world, you will still be Angie, forever nothing can change that now.

I have only been on HRT for a little over three months but just having started has allowed me to release all of the pretense and acting - my emotions have erupted and there is no way to turn them off, the hormones are the excuse we use for becoming the emotional creatures that we have kept hidden for so long.

The decision of course is yours but I believe that you will always be a woman and I for one want to have you around for a long time - so does your wonderful accepting family - I hope there is a different treatment and you don't have to make that decision.

Love ya,

Sally

[Guest again]

Hi Angie,

Just to say, here's hoping all works out for you!! Take care

[Guest SusanKG]

Angie,

So sorry to read of this. Achieving what you have, you should not have to take on any more medical issues in your life. Well, you beat the big T attack; I'll bet you beat this, and hopefully it turns out to be along the lines of some sort of false positive. Obviously, all your friends new and not (never say old) are here for you.

Love, SusanKG