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Complex endometrial hyperplasia with papillary change/nuclear atypia, p53 and 16 Complex endometrial hyperplasia with papillary change/nuclear atypia, p53 and 16

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  #1  
Unread 10-22-2018, 12:10 PM
Complex endometrial hyperplasia with papillary change/nuclear atypia, p53 and 16

Ok, sorry for the long title. So post total lap assisted hysterectomy with ovaries removed, pathology report reads “complex endometrial hyperplasia with papillary changes and nuclear atypia. P53 and p16 present in sample A17”
Fine, I’m reading that that was in my uterine pathology and clearly my doctor isn’t concerned because she simply said “you’re fine now” and declined to send results to gyn oncologist because she said that 3 drs at Cleveland Clinic read it and said I’m fine. (I was under the impression they had simply read and interpreted the pathology report and follow up post hysto with that diagnosis was a totally separate entity. I also feel like my gynecologist “ghosted” me post op; no call or follow up at all).
So my question is this: what should I do to follow up? Should I be concerned, with such a large degree of endometriosis that was found, that these cells may spread and come back later as cancer someplace else? I’m kind of lost here.
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  #2  
Unread 10-22-2018, 12:31 PM
Re: Complex endometrial hyperplasia with papillary change/nuclear atypia, p53 and 16

Myself, I'd be very interested to know *which* doctors at Cleveland Clinic read the path report. I'd be reassured if one of them was a gyn oncologist. If the report hasn't been read by a gyn onc, you might want to push to make this happen, just for your own peace of mind.

I'm not reading anywhere that you had endometriosis? Endometriosis is when endometrial cells that otherwise look and behave normally start growing outside of your endometrium.

Endometrial hyperplasia is when endometrial cells in your endometrium start growing and reproducing more rapidly than normal. Hyperplasic cells may display other changes and atypical features, as yours have done. Endometrial hyperplasia is sometimes referred to as "pre-cancer" because there's a probability that the cells may eventually become cancerous. However, the difference between hyperplasic and cancerous cells is that hyperplasic cells aren't invasive. They don't try to escape the endometrial layer.

Cancerous cells:
- Grow and reproduce faster than normal, as hyperplasic cells do;
- Look weird on a cellular level, as hyperplasic cells sometimes do;
- Try to escape the endometrial layer, as endometriosis does.

You had weird-looking, fast-growing cells. However, there's nothing in that report that's suggesting to me that the cells had reached the point where they were trying to escape the endometrium - and your endometrium is now gone.

The other thing to be aware of is that even if you'd had full-blown early-stage endometrial cancer, quite often a hysterectomy is the only treatment that's needed - and you've already had one. If you like, you could speak to your doctor - or another doctor whom you're happier with - about having periodic check-ups to make sure everything's okay.
  #3  
Unread 10-22-2018, 12:48 PM
Complex endometrial hyperplasia with papillary change/nuclear atypia, p53 and 16

Hello, and thank you!
I did have quite extensive endometriosis, does that make a difference?
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  #4  
Unread 10-22-2018, 12:59 PM
Re: Complex endometrial hyperplasia with papillary change/nuclear atypia, p53 and 16

Were hyperplasic cells found in any of the endometriosis implants that were removed?
  #5  
Unread 10-22-2018, 01:05 PM
Complex endometrial hyperplasia with papillary change/nuclear atypia, p53 and 16

The pathology report makes no mention of any testing performed on that tissue. That’s my concern.
I am a hospice nurse, by the way. Which admittedly makes me paranoid.
  #6  
Unread 10-22-2018, 03:08 PM
Re: Complex endometrial hyperplasia with papillary change/nuclear atypia, p53 and 16

  Quote:
Originally Posted by Eballinger View Post
The pathology report makes no mention of any testing performed on that tissue. That’s my concern.
I am a hospice nurse, by the way. Which admittedly makes me paranoid.
Have you point blank asked your doctor whether or not testing was performed on the implants? If your doctor doesn't know, they can and should ask the pathologist who did the report. For that matter, since the report should include the pathologist's name, can you contact them directly? (You might have to kick up a fuss to do this last one.)

In particular, you want to know whether or not any of the endometriosis was "atypical endometriosis." If they wave this off and say this isn't something you have to worry about, point them to this article:

Malignant Transformation from Endometriosis to Atypical Endometriosis and Finally to Endometrioid Adenocarcinoma within 10 Years

Please note that this type of transformation is *rare*. I wouldn't say it's something you need to actively worry about, but I would also say that it *is* something the pathologist should have tested for.
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