Newly Diagnosed with Complex Hyperplasia with Atypia (EIN)

Posted by RKashcath @rakga, Aug 8 7:04pm

I am very scared and would love support from anyone who has gone through this. I have always had irregular periods - my cycles averaged around 40-50 days. About 22 years ago, I had a lot of bleeding and the gyn did a ultrasound and biopsy which came back fine. After that, all of my Pap smears came back normal and I have always been HPV negative. Two years ago, my general pap smear showed AGUS and atypical squamous cells, HPV negative. I had an ultrasound as well as biopsies of the endocervix , cervix and endometrium which all came back benign. Only the endometrium showed simple hyperplasia without atypia. In December, I had another pap smear which was clear of AGUS but showed atypical squamous cells of unknown significance and HPV negative. My doctor tried to do a biopsy in the office but it was too painful and we scheduled a D&C with anethesia instead. That was in late July and the results came back reading "Endometrial Polyp (Curettage): Endometriod Intraepithelial Neoplasia". My doctor called and said that they did not find cancer but that it still needs to be addressed, recommending a gyno-oncologist for a hysterectomy. I am 50 years old and have no issue with the surgery but I am terrified. I see the oncologist onthe 24th.

My husband went through BOT/throat cancer two years ago and I know that going through that is amplifying my anxiety. (He is doing great by the way!)

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Colleen Young, Connect Director | @colleenyoung | 3 days ago

@rakga, being scared in understandable. I'm tagging a few members like @meandmsjones @emmyelle @sbt19 @krisnkass, who have experience with complex hyperplasia with atypia, also known as endometrial intraepithelial neoplasia (EIN) and can connect with you.

Also see this related discussion:
- Complex endometrial hyperplasia with atypia https://connect.mayoclinic.org/discussion/complex-endometrial-hyperplasia-with-atypia/

I see your appointment with the oncologist is coming up next week. Do you have any questions as you prepare for the appointment? How are you doing?

RKashcath | @rakga | 2 days ago

In reply to @colleenyoung "@rakga, being scared in understandable. I'm tagging a few members like @meandmsjones @emmyelle @sbt19 @krisnkass, who..." + (show)

@colleenyoung I'm not doing great mentally and very anxious but want to get the appointment overwith and a plan in place. I am fine with having a hysterectomy; it's the possibility of having cancer and all that entails that terrifies me I think.

sbt19 | @sbt19 | 2 days ago

Are you in menopause? If so, did you have any vaginal discharge/bleeding? I was in menopause (age 66) and on HRT (estradiol patch + progesterone). I had a starchy discharge (no blood). Vaginal US showed a uterine polyp and endometrial thickness of 12 mm. Office biopsy was negative. Scheduled a D & C, which removed the polyp and lining. Pathology showed simple hyperplasia without atypia, which means just an overgrowth of normal cells.

My gyno recommended a hysterectomy by a gynecological oncologist, even though it was not cancer, so do not be alarmed by that referral--that is standard protocol. Since I had just had major abdominal surgery a few years prior, I elected to do a watch and see with US of the uterus every year. I still have a thicker than normal endometrial lining, but it is stable (7 mm), and I have had no bleeding or other discharge.

Since you have complex hyperplasia with atypia, you have a precancerous condition and should consider the surgery to prevent cancer. Consider it a blessing that you have forewarning and can prevent uterine cancer.

ffr | @ffr | 1 day ago

@ragka
Yes, if this diagnosis and a hysterectomy would prevent you from getting uterine cancer, it would be a blessing. I wish I had had that forewarning and opportunity. Find a great gynecological surgeon and ask if you are a good candidate for robotic surgery.

Helen, Volunteer Mentor | @naturegirl5 | 1 day ago

@rakga. I'd like to add my welcome to Mayo Clinic Connect and to this Support Group.

I see that you've already received support and descriptions of personal experiences from some of our members. I can certainly understand feeling frightened and your mind going to the worst case scenario. You just went through this with your husband so I can see how that would add to your fears.

I do hope that your doctor will answer all of your questions so that you can make an informed decision for yourself.

Here is another way to think about all of this. What if you learn it's not cancer? That's also a possibility isn it? And that going forward with a hysterectomy could allay fears that cancer might develop in the future?

emmyelle | @emmyelle | 16 hours ago

Hi @rakga

Sorry to hear of your diagnosis 😢

Please know you’re not alone. Having been through a very similar experience, I just wanted to reach out and offer a few words of support and reassurance. I felt so much anxiety around the unknown and every time I had to wait for the results of a biopsy (sometimes 2 months), I couldn’t relax at all until the results came back.

As the other ladies have mentioned, atypical hyperplasia is a pre-cancerous condition and the definitive treatment is a hysterectomy. It might not feel like it at the moment, but it is a blessing that it has been identified at this stage.

My consultant explained that having a hysterectomy is curative (provided no malignancy is found in the histology report) which is a great prognosis.

Whilst each case is unique, my hyperplasia (with atypia) resolved within 3 months of having a Mirena IUD fitted and has been clear ever since. I will likely opt for the hysterectomy post-menopause to avoid any future risk, and I still feel anxious as the hysteroscopy review date approaches and more so waiting for the results.

Sorry to hear about your husband also. That must have been very rough for you both - glad to hear he’s doing better now.

Wishing you all the best and please let us know how you get on. Sending lots of hugs 🤗

RKashcath | @rakga | 15 hours ago

Thank you everyone! I met with my gynocological oncologist this morning and he was very nice. He did a quick pelvic exam and then took my husband and me into his office to discuss plans. Since I am 50, he strongly recommends a full hysterectomy, including ovaries which I am fine with. He also recommended sentinal biopsy removal to ensure that if cancer cells are present, if and where it may have spread.

Although I really liked him, he was very "clinical" and "statistical" and kept saying that 43% of EIN will be cancer. And that he wouldn't say necessarily that if cancer was present, that it would be early stage. I guess I understand the need to be very non-committal but I think my anxiety wanted a bit more reassurance that I would be okay.

Unfortunately the first available surgical appointment is on September 30th. It will be done by Da Vinci Robot and it will be up to me if I wish to stay overnight or not.

5 weeks of waiting..... 🙁