Rare Adenoma malignum

Hello,

I am new to this forum. I just saw a GYN oncologist and they want to do a cone biopsy as they don’t know if i have adenomyosis or Adenoma malignum. Ive been reading the posts in here for a few days, which is helping, thank you!
I was wondering if anyone in here has Adenoma malignum? I have been told it is very rare, and very hard to diagnose.
Anyone that may have this, was it hard for them to diagnose you? If you dont mind me asking what was your experience through all this?
I have been healthy my whole life till just over a year ago and now lots of medical stuff going on and no one can tell me whats wrong.
Glad i found this forum as it helps to hear what others are going through.
Thoughts and best to all!

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Hello stronger
Sorry to see you in a forum like this but as u have seen it is very helpful
As adenoma malingnum is rare you might find less first hand experience
Does your doctor say they can diagnose after the procedure?

Hello Robin_hood,

Thank you for your response! He says that right now its the only option i have to find out if that is what it is. This has been a long year. I have seen many doctors and none can tell me whats wrong.

I have uncontrollable critically high blood pressure that they can not control with medication, hypothyroidism with a nodule on it, masses in both breast, and masses in my cervix/uterus and ovaries, my heart rate is elevated, i have some slight liver issues, and no one can tell me whats happening. Trying to see if anyone else has had any similar situation?
Trying to figure out what to do. Thank you for responding! It nice to see a forum with so many supportive people!
Sending positive thoughts and vibes to all!

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Wow you have soooo much going on, that must feel very stressful!
Do you you know if age is anything to do with these health issues that have suddenly ramped up or are you quite young?

Hopefully even if no one has experienced adenoma malignum before that people will be able to support an empathise with you anyway, in the various forums people are at different stages of their journey and I’m sure u will find people who are stuck waiting too. Not nice for anyone but I think a big part of this whole thing is waiting unfortunately x

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It is very stressful! I have my good days and my bad days, and try to take it one moment at a time. I am 47, so originally thought it was maybe but there is so much that came on so quickly it just doesn’t make any sense, and i have so many issues that are not tied to my age. And some symptoms are getting worse way too fast. Wish it wasn’t taking so long to find someone who can help with answers. This forum has been helpful, even if its not the same thing. I have all the same symptoms as most on here along with a lot of other things to. So reading how others are being treated, how they are doing, what they have gone through is all helpful. Thank you for taking with me and for this forum.

How are you doing through your journy in all this craziness that no one wants?

I hope and wish you well and thank you for talking with me.

I also had an adeno as well. It just mean ypur cancer cell is more glandular based. It can be a little harder to treat, but I did radiation and chemo combined and i am still here 8 years later as of April 26 this year.

Thank you for your reply! I am so glad to hear that you are still here so many years later! If you don’t mind me asking did you have a bunch of other issues also, like uncontrollable high blood pressure, or thyroid issues, heart issues, bowel issues, stomach issues, etc?
Did you have to have a hystorectomy?
Are you cancer free still?
Im glad you are still here and hope your doing well!