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Complex Hyperplasia with Atypia - Keep Ovaries? Complex Hyperplasia with Atypia - Keep Ovaries?

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  #1  
Unread 07-14-2011, 07:50 PM
Complex Hyperplasia with Atypia - Keep Ovaries?

Hello - Newbie here. I am so grateful to find this forum. Feel terrified and alone.
I apologize if this was covered already, I am not very technologically adept and this is my first forum experience.
One week ago got dx of complex hyperplasia w/atypia. Gyno recommends hyst. and also removal of both ovaries. After doing some preliminary research I was prepared to fight for keeping my ovaries. I am 47 and only mildly perimenopausal so far, saw all the health benefits of keeping them. No family history of ovarian cancer.
However I am going for a 2nd opinion with a gyno/onco and his initial recommendation (as expressed to my internist when she very very kindly contacted him personally to see if he will take my case), is that there is a good likelihood there is actually endometrial or uterine cancer present already and therefore there is a good possibility of it recurring to ovarian cancer. Thus he has to take them out??
Feels like a stupid question, but if he just takes out the uterus, leaving the ovaries, but then finds cancer in the lab, will he go back in another procedure to take ovaries?
Game over or do women still keep their ovaries with this situation?
Any advice deeply appreciated.
  #2  
Unread 07-14-2011, 11:06 PM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

Well, I happily let my ovaries go. They were so done. I was, however, 63, not 47. There is so much controversy about the benefits vs. risks of estrogen as we age. Back in the day - when I was just a little younger than you - I was very worried about cardiovascular disease (because of family history and I had hypertension) and my primary care physician agree to put me on ERT (Prempro, estrogen + provera) as a preventive measure against cardiovascular disease even before menopause. It was continuous, so I was supposed to have no periods. While I absolutely do NOT believe it had anything to do with my endo cancer, I did take it for 4 years until a gynecologist asked me (while having an endometrial biopsy because I had breakthrough bleeding) what the heck I was doing on it. I knew a cardiologist at that time and discussed this with him and he told me the jury was out but it was looking like the risks vs. the benefits of ERT were leaning toward not doing hrt - at least for cardiovascular disease prevention. So I discontinued Prempro and went along my merry way, once again having periods (ugh). My ovaries finally stopped producing estrogen and I stopped menstruating at 57. I had absolutely no menopausal symptoms but recognize I was lucky. At 62 I was dxed with endometrial cancer (endo biopsy was complex atypical hyperplasia with areas suspicious of adenocarcinoma).

One of the risk factors for endo cancer is prolonged exposure to estrogen. Knowing you have complex hyperplasia and knowing menopause is just around the corner, why would you want to keep your ovaries? Yes, your uterus will be gone, hence no endo cancer risk (assuming all you have is pre cancer), but you still have breasts and one of the risks factors for breast cancer is also prolonged exposure to estrogen (ask me how I know). You're 47, not 27. The average age for menopause is 51. It's going to happen relatively soon whether it happens naturally or surgically. And this has nothing to do with ovarian cancer.

I understand that many women who do not have endo cancer, but have had hysterctomies and oophorectomies suffer from vaginal dryness and atrophy, can benefit from estrogen creme. The creme, applied locally, is not asborbed systemically, but makes life a lot more pleasant down yonder.

I'm very pleased you'll be seeing a gynecologic oncologist. Ask him/her about these issues. Don't assume that removing your ovaries will be the end of your feminity. Sometimes it is fortuitous to have that early dx of complex hyperplasia with atypica and then hysterectomy and BOS to not only save your life, but also your "life". At your age, I would also be concerned about having my ovaries removed, and I hope you will get all the information you can before making a decision.

Best of luck to you.

Suzanne
  #3  
Unread 07-15-2011, 09:35 AM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

Hi,

I was diagnosed with severe complex atypical hyperplasia at the age of 54. I was 100% sure I wanted everything taken, my reasoning being, if hyperplasia has already occurred in the uterus whose to say it won't occur in the cervix or ovaries? I certainly was done having children and I simply didn't want to tempt fate. I did have some memopausal symptoms - even at 54 - but I went on Bio-identical HRT and am doing well.

I know these decisions are hard, you'll make the right one for you! Keep us posted.

Diana
  #4  
Unread 07-16-2011, 09:05 PM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

Thank you ladies for your support!!
I have been reading about staging surgeries on the forum and am getting to understand a lot of information very quickly.
Double Whammy, I was really interested and appreciative to see your new thread on the ways endo. cancer spreads. My dr. apparently is going to recommend removal of ovaries because of the possibility of recurrence of cancer to the ovaries. One book I have, The Gynecologist's Second Opinion by Dr William Parker, says if you have uterine cancer you are twice as likely as the average woman to develop ovarian cancer.
Thank you again.
  #5  
Unread 07-17-2011, 08:01 PM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

Chelsealady,

I'm glad you found us. As you've been reading you may already have come across another important reason gyn/oncs often recommend removal of ovaries when endometrial cancer could be lurking - a large proportion of endometrial cancers are estrogen driven so removing a major source of estrogen offers another measure to help prevent a future recurrence whether to the ovaries or the many others body sites this type cancer can invade.

I am very glad you're seeing a gyn/onc. We usually suggest one use a gyn/onc even if the dx is pre-cancer as there are a number of extra steps taken during surgery if cancer is found. In my case I did use my gyn BUT she had a gyn/onc, one of the best in the city, ready to step in as necessary.

Pls keep us posted and good luck with your appointment with the specialist. You will make the right decision for you re the ovaries once you gather all your info and also discuss this with your doctors.

:
  #6  
Unread 07-18-2011, 03:41 AM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

I was younger than you at diagnosis but I opted to keep my ovaries - largely for reproductive reasons (we just had a child via gestational surrogacy with my eggs) but also because I am premenopausal, my family history of heart disease is pretty horrible but no gyn cancers at all.

I will re-evaluate whether to keep the ovaries after menopause when I get there.

My surgeon did a close visual inspection and 2 pelvic washes as well (one at a D&C/lap before the hysterectomy, another at the hyst) - that plus the pathology (grade/stage) reassured me that it was a reasonable choice in my case.
  #7  
Unread 09-11-2011, 02:20 AM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

I had same dx, age 50 and kept mine. Am doing very well without regrets!
  #8  
Unread 09-11-2011, 08:17 PM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

Thanks, Skingal. It is important for everybody to know there are options and they need to carefully consider what to do. My first doctor just told me to take everything out without giving any reasoning or other options. Glad I did further research.
I ended up having mine removed, because in addition to the CAH (which did end up being early stage uterine cancer, and that increases the risk of ovarian cancer -- although of course I didn't know for sure going into the surgery), I also had other 2 additional increased risk factors for ovarian cancer going into the surgery, namely that I have never been pregnant and started menstruating at age 11. On top of that I had some gray areas because both my mother's ovarian history and her mother's are unknown. Putting it all together, I decided it was too much increased risk of ovarian cancer, above that of the average woman, in my case.
I have been using the Vivelle Dot Patch estrogen replacement. According to my surgeon, it is OK to use in patients who have this dx. Since my surgery Aug 12 I have not had any hot flashes.
To be honest I have not done well emotionally before and after the surgery but I don't think that was hormonal. I think it will get better after more time passes.
Glad you have done so well and made the right decision!!
  #9  
Unread 09-12-2011, 09:12 AM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

I too was dx w/ Complex Hyperplasia w/Atypia and my gyn/onc declared even through the surgery that it was just that, not yet developed into cancer. Pathology came back Stage 1 grade 1. I am 51 yo and having terrible hot flashes but so glad to know they took ovaries too, even before he knew it was cancer. God Bless you and keep you. Hugs!
  #10  
Unread 09-12-2011, 12:18 PM
Re: Complex Hyperplasia with Atypia - Keep Ovaries?

My cancer wasn't diagnosed until after my hysterectomy - that's why I had to go back for staging surgery. Since you know going in and a gyn-onc will be doing the surgery, you'll probably get it all done at once.

Because of the way my hyster was done, we don't know for sure where it started or how big the tumors were. The first surgery revealed a small spot of cancer on one ovary and a bigger patch on the uterus. My gyn said it hadn't gone into the uterine muscle yet.

Staging surgery showed that it had gone all the way through the uterine wall into the fatty tissue behind the uterus. Gyn-onc believes it started in uterus and spread to ovary but it's possible there were two primary cancers that formed independently.

I was 49 and perimenopausal when I had my ovaries removed. A few months later, menopause hit me with a ton of bricks. I went from being fine one day to my vulva and vagina so dry it felt like sandpaper and having wild mood swings and crying jags. My doctor put me on an antidepressant which settled down the moods. The dryness resolved itself within a couple of months. I still need lube for any penetration but that's all. I had hot flashes several times a day at first. More than a year later, I have one maybe once a week.

Because of the type of cancer I had and the stage, my gyn-onc told me no hormone replacement ever. But I'm doing fine without them. Also, if my ovaries hadn't been removed with the hyster, gyn-onc would have taken them at staging. I had kept my cervix originally but he took that too, along with some lymph nodes and other tissue samples

Good luck with your appointment. Keep us posted.
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