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Very Thick Lining, 23mm Very Thick Lining, 23mm

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Unread 03-26-2010, 07:34 AM
Very Thick Lining, 23mm

I'll try to keep this brief.

In October and November of 2009 I didn't have a period. I didn't really worry about it as I'm 48 and from everything I'd read, missing periods at my age was normal.

Then in December I had the worst period of my life. Lasted 15 days with very heavy bleeding, lots of big clots and soiled clothes. At the time I figured it was just my body once again cleaning out from the two previous months of no period. But then just two weeks later it started again, and this time it lasted 21 days! That was when I finally went to my family doctor who referred to me to an OB/GYN. They did a biopsy and ultrasound, also tested my thyroid and did a pap smear. Everything came back normal except the biopsy, which showed Endometrial Hyperlasia without Atypia, which of course is not cancer yet but increases your risk. That alone scared me to death! But I think what has the most concerned is that my endometrial lining is measuring 23 mm, which she said was a little more than an inch thick, and 10x the normal measurement. Ultrasound also showed a cyst on my left ovary, which I've had off and on all of my life. I already had my right ovary removed years ago because of recurrent cysts. At that point she recommened a total hysterectomy, which was originally scheduled for this past Wednesday (24). I was a wreck because I had gone from thinking I was just going through normal pre-menopausal symptoms to being told I had a pre-cancerous condition, anemia and a very abnormal endometrial lining and needed to have a hysterectomy all within about three weeks time!

In addition to this everything was rushed because the OB/GYN they referred me to was about to go on medical leave. I had noticed that when I talked to her that she looked tired, walked slow and appeared not to feel good, etc. I didn't fell comfortable asking personal questions about her condition, and everyone assured me that if she didn't feel she could do the surgery safely she wouldn't, but I was still not sure. In the end she ended up backing out of surgery this past Monday, which honestly was a complete relief to me! I don't even want to have to have surgery, but if I do, I certainly want to have confidence in my surgeon. So now I have an appointment with another OB/GYN that I think I will feel much better about this coming Thursday (April 1).

I am really worried though, especially about the thickness of the lining of my uterus. I'm worried that because it's so thick that the cells they biopsied, which I'm guessing were on the surface, probably aren't providing an accurate diagnosis and that there might be more going on in. I wasn't worried too much about the cyst on my ovary because I've had them all of my life, but my first OB/GYN said they would have to monitor it? I thought these things just came and went with your cycle, mine always have? I also have not stopped bleeding for weeks now! It's not as heavy as it was, but enough that I have to wear a pad all of the time.

I'm hoping to hear from others who perhaps had an endometrial lining as thick as mine. Did you end up having cancer or not? I'm scared, but I'd rather know potentially what to expect. Of course, I'll have lots of questions for my new OB/GYN this week. Thanks a bunch!
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Unread 03-26-2010, 07:48 AM
Re: Very Thick Lining, 23mm

My endometrial stripe was 2 cm in an ultrasound, which was described in the report as "the upper limits of normal." I was 48 and perimenopausal. The biopsy showed complex hyperplasia with atypia; my cancer was not diagnosed until the D&C, and then surgery revealed it to be significantly more advanced than they thought it would be.

I hesitate to tell this story, because I don't want to worry you unnecessariy. You don't have "atypia," and I did. Many doctors will tell you that endometrial biopsies are very accurate, but in my case, it was not.

I'm glad that you have another appointment soon. Try not to worry too much in the meantime, but don't hesitate to post here with questions! There's a lot of support and knowledge on this board.
Unread 03-26-2010, 08:01 AM
Re: Very Thick Lining, 23mm

Since it sounds like a lot of the issue is possible pe cancer or cancer, I'd try for a 2nd opinion from a GYN oncologist. I was told 10 cm was top of normal for pre menopausal, and guess I'd be concerned too about sufficient biopsy sample. And it sounds like you had reservations. So I'd really go for a GYN onc plus the OB GYN, I think you'd get better info seeing them both. Gets pricey I know but it's your body and serious issues. Good luck.
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Unread 03-26-2010, 07:36 PM
Re: Very Thick Lining, 23mm

I agree with what's already been said here. I am almost in the same situation as rgk - biopsy showed complex hyperplasia w/atypia, D&C a week later showed cancer. I am lucky that it was stage 1A - I was pre-menopausal (I'm 34) and I had chalked it up to getting older (my periods have always been heavy and irregular). My lining was also extremely thick - it's what prompted the biopsy.

You definitely want to talk to a gyn/onc. We knew it was cancer going into my surgery, but my gyn performed the LAVH/BSO, then my gyn/onc took over and did the staging. I think I would have worried myself to distraction if I'd had the LAVH and then had to have a second surgery for staging.
Unread 03-26-2010, 08:05 PM
Re: Very Thick Lining, 23mm

I am 48 y.o. also. I started bleeding HEAVY in October 2009. I too thought this was probably peri-menopause but went for a check-up anyway. I had an ultrasound in Nov. that showed a 30 mm endometrial lining. I had an endometrial biopsy the next week that was normal. My GYN said all it showed was that I had recently ovulated. The bleeding became heavy again in Jan. so I was scheduled for a D&C & hysteroscopy in mid February. A week before the D&C, I developed such severe bleeding & clotting that I ended up in the hospital for 3 transfusions. The D&C did show cancer - grade 2 and I am scheduled for surgery & staging in a month by a GYN Onc. KAlexaLott, I'm glad you are listening to your body and taking this seriously. I will keep you in my prayers and hope all goes well for you.
Unread 03-31-2010, 10:39 AM
Re: Very Thick Lining, 23mm

I just had an u/s and it showed 18 mm lining. Waiting on my labs before proceeding. I am anemic and very tired of the bleeding/clotting. And now having to add additional worrying regarding cancer. I have no insurance so I talked through options with my doctor. But I think I would rather go ahead with the hysterectomy rather than spending a few thousand for an ablation and having to still go through with a hysterectomy shortly.
Pardon my ignorance but what is staging. In the event that this is something else I may have to have later.
I have had dysplasia in the past with cryrosurgery. So the doctor did say that she would recomend removal of the cervix given the history. I also have cysts on my ovaries and she would recommend removal given family history of breast cancer and cysts being present.
Thank you for the information I just want to make sure I ask the right questions to make sure we try to address as much as possible.
Unread 03-31-2010, 10:52 AM
Re: Very Thick Lining, 23mm

Staging is seeing how far the cancer has spread----cervix, how far into uterine wall, ovaries, maybe lymph nodes----if you have cancer. It is something to assess need for treatments. If they already know you have ca they plan it, but sounds like they're taking all that anyway, and they'll check it out for ca. That's just a laymans explanation, your Dr can explain more how it applies to you. Good luck.

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