1. < Gynecologic Cancers

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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mariegraces | @mariegraces | Jan 10 12:06pm

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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 6 2:06pm
In reply to @mariegraces "This was literally me at the end of July. The minimal thickening is a good sign...." + (show)
@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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mariegraces | @mariegraces | Dec 27, 2023

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.

REPLY
1 reply
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 20, 2023
In reply to @virtuos1 "I just saw your post today and can't believe how similar our stories are. I am..." + (show)
@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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Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 20, 2023
In reply to @amt1105 "My next appt is on the 21st however he did say he would call me as..." + (show)
@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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amt1105 | @amt1105 | Dec 20, 2023

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

REPLY
virtuos1 | @virtuos1 | Dec 19, 2023
In reply to @amt1105 "My next appt is on the 21st however he did say he would call me as..." + (show)
@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.

Jump to this post

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>

REPLY
1 reply
amt1105 | @amt1105 | Dec 9, 2023
In reply to @naturegirl5 "@amt1105 I haven't heard specifically of what you are sharing about the tumor in the ovary..." + (show)
@naturegirl5

@amt1105 I haven't heard specifically of what you are sharing about the tumor in the ovary and endometrial cancer. At least not in our Support Group. We're a self-selected group who comes here and I hope others in group will come here and provide more information about their experiences.

I've been in your place and heard medical results (endometrial cancer) that I wasn't prepared for or expected. It's so frightening and devastating. I'm going to share the advice I give myself. What you're going through is huge and trying to minimize it or trying to block it from your mind isn't helpful. It might sound trite, but allow yourself your feelings. If there are others (your spouse, your children, your close friends) who will sit with you and listen, then allow yourself to share your feelings, especially your fears. If you are having difficulty sleeping (I did) then get up, walk around, and if possible, go outside and look at the night sky. If it's too cold where you are you can look out your windows. I find nature calming and perhaps you do too. The emotional place you are right now is even more scary because you don't have all the information yet. So, you wait for the pathologists to do their work. Waiting is really difficult.

It's very encouraging that lymph nodes were negative as was the pelvic wash. The tumor in the ovary may be benign and unrelated to the endometrial cancer. Hope. That's what I keep coming back to. This doesn't mean "I'll think positive. I'll be optimistic". There is something deeply spiritual, to me, about Hope. You are doing everything right by getting medical care, working with your doctors, and following up. You are turning toward Hope by allowing the professionals to do what they do best.

When is your next appointment with your oncologist?

Jump to this post

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.

REPLY
2 replies
amt1105 | @amt1105 | Dec 9, 2023
In reply to @naturegirl5 "@amt1105 I haven't heard specifically of what you are sharing about the tumor in the ovary..." + (show)
@naturegirl5

@amt1105 I haven't heard specifically of what you are sharing about the tumor in the ovary and endometrial cancer. At least not in our Support Group. We're a self-selected group who comes here and I hope others in group will come here and provide more information about their experiences.

I've been in your place and heard medical results (endometrial cancer) that I wasn't prepared for or expected. It's so frightening and devastating. I'm going to share the advice I give myself. What you're going through is huge and trying to minimize it or trying to block it from your mind isn't helpful. It might sound trite, but allow yourself your feelings. If there are others (your spouse, your children, your close friends) who will sit with you and listen, then allow yourself to share your feelings, especially your fears. If you are having difficulty sleeping (I did) then get up, walk around, and if possible, go outside and look at the night sky. If it's too cold where you are you can look out your windows. I find nature calming and perhaps you do too. The emotional place you are right now is even more scary because you don't have all the information yet. So, you wait for the pathologists to do their work. Waiting is really difficult.

It's very encouraging that lymph nodes were negative as was the pelvic wash. The tumor in the ovary may be benign and unrelated to the endometrial cancer. Hope. That's what I keep coming back to. This doesn't mean "I'll think positive. I'll be optimistic". There is something deeply spiritual, to me, about Hope. You are doing everything right by getting medical care, working with your doctors, and following up. You are turning toward Hope by allowing the professionals to do what they do best.

When is your next appointment with your oncologist?

Jump to this post

Thank you so much for your kind words. Last night I didn’t sleep at all it’s been so very difficult. My husband and my daughter have been my rock through all of this. I’m thought the same since they didn’t find any cancer in my lymph nodes or with the pelvic wash, maybe it’s early stage. I don’t know what to think. It’s been such a roller coaster ride. They are did gene bloodwork for the BRCA gene. We will see what comes of that. I cannot thank you enough for your kind words and support. It truly does help to talk with others who have been through this.

REPLY
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Dec 9, 2023
In reply to @amt1105 "Helen, I had my follow up today after my surgery and I’m in complete shock. Stage..." + (show)
@amt1105

Helen, I had my follow up today after my surgery and I’m in complete shock. Stage 1 endometrial cancer however they found a 3mm tumor in my ovary as well. I’m beyond devastated. I almost passed out in the Dr’s office. They did biopsy the lymph nodes they came back negative they also did a cavity wash which came back negative. Oncologist believes that these are two serrated incidences. I’m so distraught not sure what to think. Oncologist is working with pathology to see if both are related, if they are then I have to have chemo, if not then no chemo necessary. Have you ever heard of this before? I’m so so scared. Thank you

Jump to this post

@amt1105 I haven't heard specifically of what you are sharing about the tumor in the ovary and endometrial cancer. At least not in our Support Group. We're a self-selected group who comes here and I hope others in group will come here and provide more information about their experiences.

I've been in your place and heard medical results (endometrial cancer) that I wasn't prepared for or expected. It's so frightening and devastating. I'm going to share the advice I give myself. What you're going through is huge and trying to minimize it or trying to block it from your mind isn't helpful. It might sound trite, but allow yourself your feelings. If there are others (your spouse, your children, your close friends) who will sit with you and listen, then allow yourself to share your feelings, especially your fears. If you are having difficulty sleeping (I did) then get up, walk around, and if possible, go outside and look at the night sky. If it's too cold where you are you can look out your windows. I find nature calming and perhaps you do too. The emotional place you are right now is even more scary because you don't have all the information yet. So, you wait for the pathologists to do their work. Waiting is really difficult.

It's very encouraging that lymph nodes were negative as was the pelvic wash. The tumor in the ovary may be benign and unrelated to the endometrial cancer. Hope. That's what I keep coming back to. This doesn't mean "I'll think positive. I'll be optimistic". There is something deeply spiritual, to me, about Hope. You are doing everything right by getting medical care, working with your doctors, and following up. You are turning toward Hope by allowing the professionals to do what they do best.

When is your next appointment with your oncologist?

REPLY
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