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Complex hyperplasia Complex hyperplasia

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Unread 04-04-2011, 02:42 AM
Re: Complex hyperplasia

I went to the ob/gyn for severe bleeding. A phys assistant treated my situation as the most severe it could be: cancer. I thank God she did that. She took a pap smear, uterine biopsy, and measured my uterus. Also gave me the depo-provera shot which is progesterone. It stopped bleeding for almost 3 months, but resumed again after it wore off. Immediately she saw a polyp, it was very vascular so it had to be removed by the ob/gyn. She scheduled blood tests and an ultrasound. At the polyp removal procedure ob/gyn suggested novasure mesh to remove the lining. My pap smear and uterine biopsy was negative. I returned a few weeks later for consultation. Polyp was complex hyperplasia with atypia, pre-cancer. No novasure, he was referring me to a gyn/onc for total hysterectomy by da vinci robotic. I was upset because at that point I knew something could be brewing and the polyp was something else. I went to the gyn/onc. I guess he reviewed the test results and ultrasound. His diagnosis was 43% chance of cancer. My world crashed. Woke up from my hysterectomy to the recov nurse saying they removed lymph nodes. I knew I had cancer. My gyn/onc confirmed that. After endless waiting, my path results came in as endometrial cancer stage 1, 1A. He did a cancer staging by removing 28 lymph nodes and 2 para-aortic lymph nodes. The cancer was contained but I need to be screened for two years every 3 months.

I'm not trying to alarm you, but you need to ask to be referred to a gyn/onc. Both my ob/gyn and internist made light of it that it was pre-cancer. But they knew proper procedure for pre-cancer is referral to gynecologic oncologist for hysterectomy and cancer staging. You have a right to ask for a second opinion, I suggest you ask for a referral to a gyn/oncologist. Good luck.
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Unread 04-04-2011, 02:54 AM
Re: Complex hyperplasia

I would like to add. In 2003, I had non stop spotting everyday for about 2 1/2 years. At 41 years I finally went to a ob/gyn, my uterine biopsy tested pre-cancer. She choose to treat me with Levlen a progesterone type birth control pill. After 6 months, I biopsied negative. I continued to take it for 3 years. I guess she was trying to preserve my fertility. In 2007 I changed medical plans and forgot about the pre-cancerous condition. Major bleed once in 2006, twice in 2009, and off and on in 2010. My bleeding was dark and jelly like, then changed to large clots and bright red blood, the last week it was bright red and watery. I don't know your age, but perhaps they need to look into this precancerous condition. Ask for a second opinion. To at least put your mind at ease. All the best.
Unread 04-04-2011, 09:17 AM
Re: Complex hyperplasia

Mikiala, So you had this condition for years??? I did have a d&c which came back as simple hyperplasia, no cancer, and that was end of January 2010. In February started megace for 3 month and June biopsy showed no hyperplasia at all. I have read that it can regress spontaniously. I have lost 30 pounds and still am loosing weight since my last biopsy. I am so scared now after reading your posts. Are there other symptoms? I never had heavy bleed, or the watery discharge. I had occasional spotting. One spot. After all this treatment, since starting provera, 3 spots, but I was told the hormones could be doing that. I have issues with the hormones too, tender breasts, I cry often, I have a lot of anxiety. Its not fun.
May I ask how the hysterectomy went? The hospital where I will go for a second opinion does the da vinci as well. How long were you in the hospital and was there much pain? I am glad that caught your cancer at an early stage. Well, I am very scared now, but I think deep down I already know what I have to do. Its just hard doing it all alone. I have 0% support.
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Unread 04-04-2011, 12:38 PM
Re: Complex hyperplasia

I have another question to ask. Yes I will ask my gyn on Wednesday just thought someone here might know.
Okay so progesterone thickens the lining of the uterus, right, so there should be something to shed. Well, I take it 14 days on and 14 off. Those 14 days off is when I am suppose to bleed from drop in progesterone levels. I am in menopause so I am not sure how its suppose to work. I am scared so much right now. What if this progesterone is building up and building up my lining and not shedding like it should? What role does estrogen play in this? Could it be I don't have enough estrogen??? I thought, that Hyperplasia and Uterine cancer was caused from unopposed estrogen or estrogen domenance which means that I must have too much estrogen because I had hyperplasia?? Grrr I feel stupid, I do not understand this. On top of it all, the pharmacist said that the usual dose is 10mg a day yet my gyn prescribed me 20mg a day of progesterone??? Help please does anyone know how this all works??
Unread 04-04-2011, 02:06 PM
Re: Complex hyperplasia

I hope you have calmed down somewhat friend. After my D&C last sept 27th, the pathology came back complex hyperplasia with atpia. One week later I had my davinci total hysterectomy. I wont say it wasnt scary for was. More than words can explain. But, trust your oncologist and his davinci team. I did. The minute I met him at my consultation, i knew he was going to help me. And he did.
My davinci went smoothly....36 hours after the surgery I was home recovering.
My second 3 month check up is May 3rd. And I have been feeling great.
So, please try to stay positive and calm. Let your oncologist explain what he/she needs to do...and trust him or her.
Come here when you need support and help dealing with it all. Someone is always here to listen.
Good luck to you friend...and best wishes for a great outcome.
Unread 04-04-2011, 10:29 PM
Re: Complex hyperplasia

Kasianni, please do not be alarmed or overly anxious. Getting a second opinion is the best thing to do to calm your fears. My understanding of complex hyperplasia with atypia is that it is precancerous. But your D&C and progestin treatments may have reversed this condition. Progestin thins your uterine lining. I think my original precancerous condition in 2003 was reversed that way. My biopsy was positive two times, then negative third and fourth times. My problem was that I stopped going to the doctor for 5 years. Excessive bleeding and severe bleeding was my wakeup call, it was a little too late for any progestin treatments.

Regarding the da vinci. Wow I didn't know such technology existed. My surgery took 3 hours with cancer staging. I woke up with lower back pain (I'm a side sleeper) and a little pain in the incision area and catheter. When asked pain level, I told them 3 or 4 even though I had worse. I was released the next day. I read many articles and forums on this website to prepare for the surgery and after. After the surgery, I drank a lot of water, walked when I could to release the gas they use in surgery and slept. Biggest problem was constipation (hilarious-stricken down by bm), hot flashes/night sweats, and getting my urine back on track. Reading the post op messages, those who had abdominal wounds took longer to rebound although our inner wounds are the same. We are all still healing. Remember you are not alone. All of us are with you. I went to my onc and surgery alone, but I was prepared by this wonderful website, my fellow hystersisters, and my trust in God. Good luck.
Unread 04-05-2011, 03:57 AM
Re: Complex hyperplasia

(((Kasi, )))

As understand during a biopsy in Dec 09 your dx based on a biopsy was "complex hyperplasia with atypia."although this dx changed to "complex hyperplasia" during a D&C also in Dec 09, you have had pre-cancer. FYI, although I had a D&C, that DX showed complex hyperpasia with atypia and not cancer yet during surgery they did find cancer- thankfully still at a very low stage. This can be a tricky disease as bad cells mainly are in the uterus where they are not easily obtained/seen during testing.

Since you did have a pre-cancer DX, I still recommend you get a second opinion from a gyn/onc, the real cancer experts. Your gyn should not object as you are trying to be pro-active re your health and you may get better peace of mind talking to a gyn/onc.
Unread 04-06-2011, 05:30 PM
Re: Complex hyperplasia

Well I went today for my biopsy. Took 4 Advil and an ativan.
I arrived and she went over the June results and my symptoms now and didn't even want to do a biopsy. Told me I could stop treatment and see if any bleeding occurs. If so right in for a biopsy. I asked her some questions and she read my whole report and told me this. Last December when I had my first biopsy which showed complex hyperplasia with atypia, then my D&C results which showed no cancer and just simple hyperplasia, well apparently the pathologists (there were two different ones) went over my samples again (re-evaluted) and came to the conclusion there was no atypia only simple hyperplasia. So then was treated with Megace for 3 months and had another biopsy which showed no hyperplasia at all. My gyn is rude thought. She is French and am perfectly bilingual but some medical terms in French are even hard for me to understand so I asked her once to repeat what she said and she replied "I have 16 patients to see before 10 so I am not going to keep repeating myself. I was shocked. I have every right to ask questions I think. Anyways I asked the receptionist to send my whole file to my GP and she will explain things to me as I see her tomorrow. I will call the hospital and get a second opinion from a gyn/onc to be sure but I am very relaxed today as I was not for the past few weeks. Another thing, which is really embarassing, but hey I've said so much here is that, I haven't been with a man for almost a year!!! Yikes. Today I was suppose to put some emmla cream (its numbs the area so its less painful for the biopsy.) Well I put it about 1/2 inch as I am suppose to do and it killed me and I started bleeding. OUCH. I asked her about that and she said it was because I haven't had sex for a while (giggles) and it was probably tight and I irritated it. Sorry for all the details ladies. So I went home and told my sister and she said "well I guess the say is true, if you don't use it, you loose it"!! UGH Seems to be true. Well I am so tired now, all this stress the past few days just dropped down on me. One last thing, to everyone that replied or cared enough to read my posts and reply, it means everything to me. In reality I am a stranger to most of you, yet you showed empathy and sympathy and are wonderful ladies. I know I repeat myself at times, and ask the same questions over and over and am a pain in the butt at times but I too care for others and care how people feel and well I just think you are all wonderful. So thank you.
Unread 04-07-2011, 12:57 AM
Re: Complex hyperplasia

Kasianni, that is great news. I don't understand how a pathologist could misinterpret something so important. And your gyn not saying the second time that there was an error in the first result. Being a busy doctor does not excuse stressing a patient for nothing. My surgeon is so busy or maybe a man of few words, but he didn't talk much about the surgery and pathology results. I'm debating on whether to let it go or ask for a copy of the surgery and path reports. I try not to think of human error, it scares me. We have to keep faith or question if we have to or take it to the next level--a second opinion. Remember we are all in this together. Take care.
Unread 04-07-2011, 02:29 AM
Re: Complex hyperplasia

Hi Kasi,
You need to do what you think is best for you. If you are comfortable with the reports from your current gyn as well as the overall care and watchulness she is giving you, and also accept the pathologists changed call then so be it and be content that you are clear of the beast. If not, then seek a second opinon and IMHO still from a gyn/onc who can look at the path report and other records. This is entirely your call.

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