Just diagnosed with atypical complex hyperplasia after uterine biopsy

Posted by amt1105 @amt1105, Nov 14, 2023

I’m 53 and have not gone through menopause. I went to my yearly gyno visit, and I got a bad Pap test back. Gyno did a cervical biopsy which was negative and and endometrial biopsy which came back with the atypical complex hyperplasia. I had a transvaginal scan done, uterus is 5.7mm, myometrium was normal, no masses were found, only 3 fibroids which I knew were there. Normal pap last year and normal TVUS back in March of this year. I have been reading so much online and it’s so confusing. Is this cancer? I go to my specialist tomorrow to hopefully find out next steps which I hope is a complete hysterectomy. I had a partial done five years ago. I’m just looking for some help I haven’t been able to sleep or eat in weeks.

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@amt1105

My next appt is on the 21st however he did say he would call me as soon as he knew more about the pathology report.

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I just saw your post today and can't believe how similar our stories are. I am 53, had an "abnormal" pap in July, at which time my gp had also tried to remove the Mirena iud that I had in and couldn't. She referred me to a ob/gyn but after a bit of a wait, had me back into her office to try to remove it with freezing, again to no avail. The same day, I heard from the specialist and she scheduled me for a hysteroscopy and iud removal in hospital. Nov. 2nd, she removed the iud along with two polyps from my uterus. On Nov. 27th, she called to let me know that the pathology report showed again abnormal cells, especially evident in one of the polyps. I was told that it was "atypical complex hyperplasia." She let me know that she'd had an opening so booked me in for a hysterectomy on Dec. 7th just to be safe with a plan to remove my uterus, cervix and tubes. On the 6th, she contacted me to say that she had done some consultation with colleagues and decided that it would be best to remove my ovaries just in case, to which she knew I was already in agreement as I asked her a whole bunch of questions in our previous chats. Today, I had my follow up with her and the pathology report revealed in fact that I had endometrial cancer and there had been a tumour measuring 2cm x 2cm removed. She believes that she has gotten everything and I will now have follow up appointments with her every 6 months for the next two years. I'm still reeling, trying to absorb all of this information, oh, and already experiencing hot flashes 10 days post op! I'm feeling deeply grateful that it was all found at such an early stage and removed but still worrying myself silly about what else could be lurking. *sigh* Thanks for sharing your story here though. It feels good to know there are others to reach out to who walk a similar journey. I pray all will be smooth with your next steps. < hugs>

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Any time you would like to chat I’m here. Tomorrow I should know more.

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@amt1105

My next appt is on the 21st however he did say he would call me as soon as he knew more about the pathology report.

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@amt1105 It looks like your appointment with your surgeon is tomorrow. Did he call with information on the pathology report prior to your appointment? How are you feeling today? How can I help?

I read an article yesterday about Hope. I learned that Hope is defined by looking optimistically toward the future with a plan. Your plan is based upon different things depending on you and what you find meaningful in your life. I like this definition because it shows that « thinking positive » or « being optimistic » isn’t really Hope. A person can be hopeful in difficult situations like going to see the doctor after a frightening diagnosis. You aren’t avoiding the appointment or avoiding your doctor. You and doctor will discuss your plan together. This is where you find Hope.

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@virtuos1

I just saw your post today and can't believe how similar our stories are. I am 53, had an "abnormal" pap in July, at which time my gp had also tried to remove the Mirena iud that I had in and couldn't. She referred me to a ob/gyn but after a bit of a wait, had me back into her office to try to remove it with freezing, again to no avail. The same day, I heard from the specialist and she scheduled me for a hysteroscopy and iud removal in hospital. Nov. 2nd, she removed the iud along with two polyps from my uterus. On Nov. 27th, she called to let me know that the pathology report showed again abnormal cells, especially evident in one of the polyps. I was told that it was "atypical complex hyperplasia." She let me know that she'd had an opening so booked me in for a hysterectomy on Dec. 7th just to be safe with a plan to remove my uterus, cervix and tubes. On the 6th, she contacted me to say that she had done some consultation with colleagues and decided that it would be best to remove my ovaries just in case, to which she knew I was already in agreement as I asked her a whole bunch of questions in our previous chats. Today, I had my follow up with her and the pathology report revealed in fact that I had endometrial cancer and there had been a tumour measuring 2cm x 2cm removed. She believes that she has gotten everything and I will now have follow up appointments with her every 6 months for the next two years. I'm still reeling, trying to absorb all of this information, oh, and already experiencing hot flashes 10 days post op! I'm feeling deeply grateful that it was all found at such an early stage and removed but still worrying myself silly about what else could be lurking. *sigh* Thanks for sharing your story here though. It feels good to know there are others to reach out to who walk a similar journey. I pray all will be smooth with your next steps. < hugs>

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@virtuos1 Your description showed that you went through a lengthy process and I’m so glad for you that you stuck with it. I can understand why and how you are so grateful that endometrial cancer was found at an early stage. I felt that way when I was diagnosed with endometrial cancer at an early stage (I had vaginal bleeding at age 67 and immediately figured something was wrong). I felt grateful that my gynecologist stuck with me through the diagnostic process and that I was referred to an excellent gyn-oncologist at Mayo Clinic because that treatment and surgery isn’t available in the rural area where I live.

Your journey is very recent. You certainly have a lot to celebrate during the Holidays this year. May the light continue to shine on your and yours as we move through this time of the year.

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This was literally me at the end of July. The minimal thickening is a good sign. I was pretty scared too and for me, a biopsy/DNC followed and then I had a totally hysterectomy. I was diagnosed with stage 2 endometrial cancer. This is my 2nd cancer diagnosis. I was diagnosed with thyroid cancer 5 years ago. In my pap, uterine cells were found on my cervix, which is how it was discovered. It has been a bit of a rollercoaster. I can relate to what you are going through. I completed some genetic testing and learned that I also have lynch syndrome. The ability to treat cancer has come a LONG way. The uncertainty and waiting for answers is hard.

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@mariegraces

This was literally me at the end of July. The minimal thickening is a good sign. I was pretty scared too and for me, a biopsy/DNC followed and then I had a totally hysterectomy. I was diagnosed with stage 2 endometrial cancer. This is my 2nd cancer diagnosis. I was diagnosed with thyroid cancer 5 years ago. In my pap, uterine cells were found on my cervix, which is how it was discovered. It has been a bit of a rollercoaster. I can relate to what you are going through. I completed some genetic testing and learned that I also have lynch syndrome. The ability to treat cancer has come a LONG way. The uncertainty and waiting for answers is hard.

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Hi @mariegraces, will you have further treatment in addition to the hysterectomy? How are you doing?

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Yes. Because the cancer they found in me was aggressive, they recommended that I do chemo and radiation. I did 3 rounds of chemo in the fall and am in my 2nd week of radiation therapy now.

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