atypical complex hyperplasia

Anyone with this diagonsis? What did you do? Hysterectomy? Confused about this diagonois.

I had that diagnosis as the result of an endometrial biopsy. I had a hysterectomy (I also had a sizable tumor on my right ovary along with an elevated CA125). Turned out in my case that I had ovarian cancer and uterine cancer.

If the possibility of cancer is suspected, please go see a gyn oncologist surgeon. They are the specialists.

Of course, my story is not your story. Good luck and let us know how you're doing.

m1021,

Hello...

This was also my diagnosis. I was told that when a hysterectomy is performed due to this diagnosis, often a 'foci' of cancer is found. In my case, this was true. I ended up with grade 1 stage 1b endometrial cancer. This does not mean that cancer is always found. But, it is a possibility. And, if cancer is found ....it is often at a very early stage with an excellent prognosis.

Do you have other symptoms..such as a discharge and/or spotting? I had those as well. Have you had other tests?

There are sometimes other avenues if you are very young and want to perserve your fertility. But, other treatments would have to be monitered closely.

As Maureenie said...if cancer is suspected it would be very wise to see an ONC/GYN to check out all your options and to get an EXPERT's opinion.

Good luck to you...keep us posted

Hugs, Diane

Did see oconoligst. Suggestion --- hysterectomy and ovaries removed. I am not wanting ovaries removed and they said OK but we need to counsel you on risk. I'm telling them to leave ovaries unless clearly diseased. Symptoms --- heavy bleeding to the point of anemia. I have not went through menopause and that was fairly typical for me. Had D&C and ablation and that's when atypical on polyp found.

m1020

Well hello again,

I did not want to have my ovaries removed either at first. However, I came to realize this type of cancer is often 'estrogen' driven. Removing them will lessen the the chance they could possibly fuel any cancer cells remaining after surgery.
Also, breast cancer is often estrogen driven as well and personally, I thought it best to remove my ovaries from that standpoint. Some sisters have had to go back and have a second surgery down the road because of future 'problems' with their ovaries. I am sure others have been glad about their decision to keep them??

We all start out not fully understanding the dynamics of cancer. Important to educate yourself as much as possible. For me....after having/experiencing cancer I am so glad I had everything removed. Just be fully informed so you can make the best choice for you. It is good you are dealing with an ONC/GYN. They are the experts and can help with your decision making.

Other sisters, have other opinions I am sure. Hopefully, they will come along soon and express more of their views/experiences.

Please let us know how it goes for you. Are you scheduled for surgery soon?

Hugs, Diane

Hi, I had the same dx you do but with the words "can't rule out cancer" attached. I believe this dx often is used to refer to pre-cancer but since the doctors cannot be 100 percent certain if there is cancer until the removal of organs, a hysterectomy usually is recommended. There are treatments that may reverse/slow down complex hyperplasia and some gyn/onc will use these with patients who want to retain their fertility; per my gyn/onc these treatments in general should be used only for a very limited time and the condition need to be carefully monitored as the odds are great that the hyperplasia will return which then of course can lead to cancer. He also noted that women under 40 have the best chance of a reversal with such drugs and those between 40-45 the second best chance but the odds for these treatments working decreases sharply for women over circa 45.
Re ovaries, being post-menopausal and knowing endometrial cancer as well as breast cancer can be estrogen driven and given that both my gyn and two gyn/onc said remove ovaries, I had them removed. Since I had not experience menopause (no doubt due to the abundance of estrogen at that time) I actually experienced menopause symptoms after the surgery. I am not sorry re this decision as I consider it a way to possible prevent a recurrence and/or breast cancer.
Perhaps it may help for you to know that in general if endometrial cancer is found at an early stage, the surgery alone often is the cure. Please keep us posted.
s, peggiesue

Hello

I was diagnosed with the same thing after a biopsy & polypectomy but then a D&C confirmed Endometrial Cancer, Basically, Atypia complex hyperplasia is considered to be the closest diagnosis before turning to cancer. I was refered to on oncologist and since I do not have children (and was trying for one when all this came to light) I opted for the treatment to reverse the cancer cells with Megace (a progesterone) I have been on it 9 months and have had 3 biopsies along the way. After the 5 months the biopsy showed no sign of cancer or pre cancer,The last biopsy showed the same.

The treatment I have gone through is not always a long term cure and down the road (hopefully after having a healthy baby) I will most likely have to have a hyst and after reading all the womens experiences on this site I would have to say I would probably remove the ovaries as well.
I would do this for preventative reasons even if my ovaries are found to be in A.OK shape. It is a tough decision.


I wish you all the best on your decision.
Please keep us posted
Tricia

i have been diagnosed with the same condition. the gyn couldnt 100% tell me it was or wasnt cancer. i talked the options and risks over with him and decided that i wanted the hysterectomy. i didnt want to go on meds for 4 months and then have a d n c and be told it had gotten worse. im also having my ovaries removed. doctor said that was advisable cause the ovaries produce estrogen and could cause cancer to reappear. im scared silly about surgery but more scared about the word CANCER

Hi m1021

My diagnosis after D & C, hysteroscopy and biopsy was severe atypical hyperplasia. My gyn recommended a hyst plus removal of cervix and ovaries (this seems to be the norm with this diagnosis due to the estrogen).

I don't know how old you are but if you're not wishing to preserve fertility, then a hysterectomy is definitely the safest option as quite often, with this diagnosis, cancer is found.

The final decision is yours but in my opinion, if a gyn onc is recommending the removal of your ovaries, then I would seriously consider having this done.

I hope that you can come to a decision that you feel comfortable with. Please let us know what you decide.

Geraldine

I, too, have the same diagnosis. I'm 33 and haven't had children yet so I'm trying the progesterone route for now while I'm under the care of a gynecological oncologist. I'm hoping to reverse the hyperplasia for fertility reasons but as a previous post mentions, I won't hesitate to have a hysterectomy, after attempting (hopefully) to have children. I just don't want to take any risks. Best wishes to you!
Shelley