Questioning removal of ovary

[fcar]

I am 40 yrs old had a previous myoectomy in 1996.  Latest test results show enlarging firbroids, multiple ranging in size from 2 cm to 13cm.  I lalso have hemoragic cysts on both ovaries.  The right ovary shows suspcious looking layers in the epithteal layer of the ovary.  I have been told that i need both ovaries and the uterus out.  I am nervous, and unsure as to what to do.  As all my research shows the risk of removing ovaries is or sometimes can be worse.  My doctor is leaning 99% towards that the right ovary they are calling suspicious is nothing more than endo verses she said a very small chance of cancer.  What other options can I look at.  To say my pain is miniumium  is non-distruptive and only bothers me close to my period the day or two before.  If endo is more or less suspected than cancer can the ovaries stay in.  I do know that my dr. said the ovaries are sitting underneath the uterus and looks like they are attached to each other and to I believe attached to the cul de sac.  Please can you give more some more clarity I do not want ovaries removed if they are not bothersome, and most of all if it is just endo.  I also have hemanginomas on my liver, very small ones, and I know this can be a problem when looking at hormone replacment.  thank you

[fcar]

Got an appt with sloan kettering as soon as next week which is good, the sooner the better!

[fcar]

Hopefully Sloan Kettering can get to see me, I am faxing my paperwork of reports to them today.  They wont give you an appt. till they see the reports.  I finally got to read the whole report it says that arising from the cysts in the right ovary neoplasm disease can not be ruled out, but the other diagnosis is endo.  If this is the case why would the ovaries have to be removed, this is why I am hoping Sloan can give me my second opionion. And you are correct  I do not have any family history of either breast or ovarian cancer.  My family members on both my mothers and fathers side have lived well into their 80's and 90's.  My dad has 8 sisters and none of them ever had breast cancer either.  Nor does grandparents or anyone on my mom's side including herself, I look at that is pretty positive.  Fran

[Plonanon]

If you can get an appointment at Sloan Kettering, that would be excellent.

You really want to avoid removing your ovaries unless it is essential.

(I am assuming you don't have a family history of ovarian or breast cancer and have not tested positive for a BRCA mutation.)

Good luck.

[fcar]

I am looking into gyn onc from Memorial sloan kettering, hopefully I can get an appt before my surgery date of nov 17th.  As the days go by I am questioning this more and more why a biopsy can't be done.  Especially since my dr. feels strongly towards that the suspicion is more endo.  I know there is always the chance of the cancer but if it is endo and I do such drastic measures I dont think I can live with the decision. If it is more serious than I fully understand what is in my best interest I question why so many hysterectomys are done a year.  All my research shows about 600,000 a year are performed and over a large percentange turn out to be removing ovaries for no cause.  So this makes me question things more.    Thanks for listening.

[Plonanon]

Can you speak to another doctor, preferably a gyn onc, BEFORE you go for surgery? I think it might help you get a clearer picture of what your situation is and what your options are, and it might give you an idea of additional things to discuss with your surgeon before he (or she) does your surgery.

As for HRT, I think there are two issues:
1. How you feel in the period after surgery if they do remove your ovaries--meaning, what menopausal symptoms do you have, and how are they affecting your life?
2. How the loss of ovaries at a young age will affect your health in the future.

In general, women who have their ovaries removed at a young age for non-cancer conditions and who do not have estrogen replacement therapy are at risk for a variety of health problems. Something to look into, and something to think about.

Best of luck.

[fcar]

Hi, thanks for your response.  I do have surgery date set-up in November and my dr. informed me a gyn/oncgolgist will be there as they have they most experieince in not only cancer but doing the surgery especially if there is much scar tissue from my previous surgery.  I did ask my Dr. to leave what she can but  I am afraid that it just might be a total removal because of how the ovaries are fused together.  I do not have any family history of either breast/or ovarian cancer myself, so I am trying to be confident that it is more endo than a small chance it can be cancercous.  Which if it is I should consder myself lucky but I cant help but think of removing everythng based on a what if suspicion.  It scares the heck out of me.  Do you know if it were a choice the people you know did not choose hrt. I know hrt is the choice when it is surgical menopause at this age. Thanks for listening

[melissam8484]

It's hard to have such an unclear situation!  I had a mass removed from my left ovary -- before surgery I gave them permission to remove everything/anything they needed to if they found cancer - but I made it clear that I would prefer to leave in as much as possible (I also have some fibroids, but they aren't big and aren't causing problems).  The mass was benign and other than taking biopsies from both ovaries they left everything in.

I would definitely be sure you had a gynecologic oncologist present for the surgery if there is *any* chance of cancer.  I had a very small chance of cancer (I'm 38, blood tests normal, no family history of cancer) but had a gyn/onc doing the surgery anyways, just in case.  

I would try to get a second opinion from the best/most experienced doctor you can find.  Doctors are very knowledgeable, but they are also only human and have different perspectives.  It can be really helpful to talk with more than one doctor - especially when you have choices about your treatment.  

During the surgery they can take a bit of the ovary and do a "frozen section" test which is 90-something percent accurate for if it's cancerous.  Depending on what that test finds they will decide what to do.  They also send off for a more accurate test, but that takes a week to come back.  I talked with my doctor a lot ahead of time about "if this then what?" sort of decisions, and ultimately I really trusted the gyn/onc so I said if there was any cancer at all then the gyn/onc should decide what is best.  I would much rather lose my ovaries than have cancer!  

You probably know a lot more about fibroids than I do, but this website looks helpful: http://www.myomectomy.net/index.htm

The doctor also said that each time you do surgery it gets a little harder (scar tissue and adhesions get in the way).  I may need to have surgery again someday for my fibroids, and so he pushed me on if I wanted to just remove everything the first time.  We ended up leaving the fibroids in, so hopefully they won't cause problems anytime soon!

I also know from researching myself that while there are definitely risks with removing ovaries, plenty of folks do just fine (with or without HRT).  There was a very good chance that I would have one of my ovaries removed, and I ended up talking to a number of people with only one ovary.  None of them were on HRT and none of them seemed to have any problems - so I wasn't worried at all about losing one ovary.  I felt the same as you - that I didn't want to remove them unless it was really needed, but I did end up feeling like I would be fine either way.  I'm sure you will be too!  

Best wishes to you - let us know how things turn out!

Melissa