confused about hysterectomy and my risks for OC

[yzf600]

Hi,
I'm new here and have been seeking help on other sites about hysterectomies due to ovarian cancer risks, and they have honestly scared me and I'm am very confused.  My sister was diagnosed with ovarian cancer (clear cell) at age 48, she is a 5 year survivor.  My other two sisters had had their ovaries already removed in their 50s so it is not known, of course, if they would have developed it.  My sister did test negative for the BRC? gene.  My maternal aunt had breast cancer, if that means anything.  My confusion is:  I am 44 and have only one ovary remaining.  I have a cyst on it that is being monitored closely.  I have been having the most horrible pelvic pain, blood in urine(comes and goes), painful sex, etc.. for a while now and an MRI has shown a very large fibroid (9cm) which is laying on my bladder and has twisted my uterus to the side of my only ovary and is very, very painful.  I need to get rid of this fibroid to ease the pain.  I found that I was a candidate for UFE by a radiologist, but my OBGYN says my risks are too great for ovarian cancer... have full hyterectomy.  I have researched the internet until I can't any more, I can't decipher what is real, what is extremism, and I am very confused.  I had wanted to have the UFE procedure in the next month so I could ease the pain and go on with my life and keep my uterus and ovary.  However, my OBGYN really has me scared and has information from an oncologist (I've not met him) about it as well.  I will get the hysterectomy in a heartbeat if that is what is right.  I made the mistake of going to a specific website about hysterectomies that said I should never get one, risk of cancer is NOT a reason, I would be castrated and my life would never be the same, I wouldn't be able to have sex, I would gain weight, I would be depressed and want to sleep all the time, and that any woman that says they are happy after one is "mental" and lying.  WHAT?  is this true?  Does anyone have advice?  anything that is real? I can't living like that if that is real, but I don't want ovarian cancer either.  

[mommyofmy2]

I had a TVH (no cuts at all) almost 6 weeks ago.  I also had a very large fibroid tumor, the dr told my husband after the surgery that if it had been 1 cm bigger they would have had to cut me.  My recovery time seems to be about normal (for what they told me to expect)  The tumor was sitting on my bladder so i had VERY frequent urination before and i think i'm cured of that problem.  I did keep my ovaries and will keep an eye out for anything unusual, my maternal gramma had ovca (my mom had a hysterectomy w/ovaries removed at 43), i'm 36, and my younger sister had a hysterectomy w/ovaries removed at 29.  I dont know alot of the pros & cons of vaginal vs. abdominal, my dr told me vaginal and right away so i went with it.  i was in the hospital only a lttle more than 24 hrs. The first week was rough, but i feel like i am ALMOST back to normal now.  Not sure if any of this helps.

[yzf600]

Had my appointment with my OBGYN... he wants to do a LAVH.  I got a 2nd opinion that says the fibroid is way to wide to safely do that and it should be a TAH.  Anyone have any thoughts on those procedures?  I've heard the vaginal way can cause more complications with bladder, etc...   I also have an appointment with the GYN-ONC to find out more details about my risks, etc.   One thing I did find out is that the BRC genes are for predicting epithial cancers, not clear cell which is what my sister had.  Anyone have thoughts on that too?  Thanks for all your advice and guidance.  

[marie3B]

I will be thinking about you Monday, hoping all goes well and you get the answers you need.  Marie

[yzf600]

I just wanted to give an update.  My MRI images from the radiologists (for consideration of fibroid embolization procedure) were sent to my OBGYN.  My normal appointment for him was scheduled for October 20th (ca125 and sonogram), however, he had his nurse call me in after seeing the MRI for today to do blood work (including the CA125).  That's kind of scary...don't know if he saw something or just forgot I was coming on Monday?  I won't see him today since he is still on vacation so I can't ask him those questions until Monday.  I'll post again after the appointment.  Thanks for your replies.

[marie3B]

Keep us posted on what you decide.  We will be here to help you through the hot flashes. Ozbron is right.  I know my cancer was genetic even though it is not a brca defect.  She is also right that clear cell is a very aggressive type of ovca.  I hope we were able to help you some.  Yours was a good question that many women are faced with .  Good luck.  Marie

[yzf600]

No, fertility is not a concern.  My concerns in all of this soley comes from fear... the fact that I went to the wrong website for help first and now honestly, my fear is dibilitating.  I know what my decision needs to be, I'm just trying to reassure myself that the things I was told on that other site is not necessarily the way it will be.  I was told I was stupid to consider it, I would be butchered and that cancer risk was NOT a reason to get a hyst. just really played on my insecurities of not knowing what to expect.   I know cancer makes the decision for people, it did for my sister, but knowing it doesn't make me less fearful of the unknown...especially when I believed from that other site the horrible things that I would become.  I had to realize when I saw a poster on that other site post that they were getting a hyst. due to OvCa...and the reply was that their OBGYN was lying to them and that was not a reason to get a hyst. because you can cure it naturally.... I knew, I had to not listen to these women anymore.  I saw what my sister went through and if she hadn't gotten a hsyterectomy, she would have died.  I found this site, and today was the first time I had posted and it has been a gift... I've prayed for God to ease my fears.. and there are many responses on this site that have.  Thank you

[OzBron]

The BRCA test being negative does not mean that there is no genetic link. At the moment 90% of OVCA is idiopathic - no known cause. It is likely that we just haven't found the genes that link OVCA that is not linked to Breast cancer yet.
You mention wanting to keep your ovaries and uterus but you are 44. Is infertility a concern? I had  no choice but surgical menapuse due to Stage 3 OVCA at 31yrs due to double oopherectomy. My biggest issue was and is the sterility at my age. Yes I had hot flushes for a bit, but decided as my cancer was not really eostrogen receptive to use HRT so I only get hot flushes now if I am unwell and my hormones go out of whack. I love not having periods - heavenly. Hormones didn't depress me - cancer did!
Try not to get yourself wound up about it. Who knows at 44 you may only have been a few years away from natural menapuse anyway. If menapause was so bad we would have no sane women over 50!
I don't mean to be flippant, but living in pain is not a solution and clear cell OVCA is not worth risking in my mind unless you are trying to maintain fertility.

[Flicka0459]

Don't be afraid. I had a total hysterectomy when I was 45.  I had cyst and didn't even know it.  No one bothered to tell me until it was almost too late.  Every year since I was 35 I had transvaginal ultrasounds, because of my family history and still no one told me I had cyst.  I screamed at my doctor and she showed me the yearly reports.  No one from the ultrasound place ever reported it. I was really mad. I did the CA-125 test and it wasn't good.  I'm now 49 headed for 50.  My mother and grandmother died from ovarian cancer.  My sister has it now.  I went through early menopause and it's no big deal. Positive attitude keeps a positive transition. I use the femring and I couldn't be happier.  Forget all those people and their horror stories.  My doctor was terrific. I know this sounds a little too "Mary Sunshine", but I believe if you have a good doctor, they will guide you to make the right decision for you.  Not that I tell this to many people, but the sex is OMG... Great and it was really good before the hysterectomy.

I wish you all the luck and I'll say a pray for you.

Lisa

[Treebee]

Hello, I don't post often but check in from time to time as this site was very helpful to me when I was in a similar situation as you are now. My grandmother died from OVCA at 58 and my mom had breast cancer at 70, she also had a total hysterectomy with removal of her ovaries at 54 because of heavy bleeding and multiple ovarian cysts. They thought she had cancer but had endometriosis. I had bilateral complex ovarian cysts. At first my gynecologist wanted to do a cystectomy after 4 months of monitoring the cysts. At my last ultrasound I had developed a few fibroids and my gyno did a CA125 which came back elevated at 122. I was finally referred to a gyn/onc. who highly recommended taking everything. I too read the scary info out there but decided to proceed with the TAH/BSO. I did not have cancer (Thank God) but had two large endometriomas and endo else where. I think that my be genetic too. I have had my moments of regretting the surgery and wishing they had saved at least one ovary as surgical menopause has not been kind to me but when I see so many of the ladies here struggling with OVCA I know I made the right decision. I am now using a low dose estrogen patch and things are much, much better. Sex is still good and the big O still happens! Ask lots of questions of your doctor - see what is best for you. Perhaps they could take the fibroid and monitor you with frequent transvaginal ultrasounds. I wish you the very best!
Teresa

[cirella]

Hi, I think that what you read about hysterectomies applies to those who maybe just want one so they have no more periods or something?  I actually have a friend who did this.  I advised her NOT to do that!!!  I know there are many reasons, though.

You have a reason.  You have family history and a pretty big fibroid.  At the very least you want that out.  And, you may not have a choice as to the final decision.  If your doc goes in there and sees your ovary is involved then they may take it all anyway.  

I was put into surgical menopause this year.  I have to say, the hot flashes at night are the worst I have, and they aren't that bad.  I'm on a low dose estrogen patch.

I hope you get lots of answers when you see the doc.  And, I so agree with Marie that you do not get ovca.

Good luck!

[nyc lady]

My sister just had a hysterectomy, she is 51, still getting her period regulary....she developed a painful cyst...and because of my history, she was immediately referred to a GYN/Oncologist.  When a first line relative, mother, brother, sister or father, have been diagnosed with Breast, Ovarian or Colon your chances of being diagnosed is increased by 10 percent.  A small percentage but, given the progosis of this disease, a percentage that I would not want to play with.
A couple of years back, there was someone removed from this site for preaching exactly what you were reading.  Surgical menopause has not been easy for me, but, I assure you that I still have an active sex life with my boyfriend (sometimes the feeling is more emotional than physical), sleep all the time - wish that was an issue, weight gain - if you watch what you eat it won't be a problem and as for depression, not a symptom that I have to deal with.  
Talk to your sister, the 5 year survivor, she'll let you know what it is all about.  Also, talk to a GYN/Oncologist.
Best of luck to you.
Pam

[yzf600]

Thank you!!!  I'm so sorry of what you had to go through.  I have prayed so much about this and sometimes tell myself how silly I'm being...it's such a simple decision I think sometimes... and I decide to get the hysterectomy and then I become terrified again.  I wish I had never gone to that site.  I really do need to hear the other side.   Why are those ladies so angry... there was no information on what they could do to help effects after a hysterectomy...it was all Drs. lying to make money, women being butchered.  My husband deleted it from our favorites and pray for all of those women on that site.   Thank you for your advice.  My family has been telling me to get the hysterectomy for a year now.  I need to hear good news about them... cause there is a lot of negative.  Thank you again.  

[marie3B]

I read a book many, many years ago called No More Hysterectomies.  It contained info like you have found.  I wish I had never read that book.  It was something I considered when choosing not to get a hysterectomy due to strong family history.  I sought other opinions that said having the surgery was too drastic.  I did end up with ovarian cancer and it was not discovered until in was in a late stage.  I also tested negative for the brca genes.  I know that the cancer was passed on through my family.  Mom died of ovca and her mom too (even though she was much older at the time she passed).  No effects from a hysterectomy are as bad as ovarian cancer. It is a monster of the worst kind.  I have had no problems from the total hysterectomy.  Since my cancer was found in an advanced stage I also had to have a colon resection and a huge rectal tumor removed.  The only complaint I could report about the hysterectomy/oopherectomy would be some hot flashes.  They have decreased in the months since surgery.  I wish I would have listened to the doc that recommended the preventative surgery.  I don't want to scare you, but I do think you need to hear both sides of the hysterctomy option.  I pray you never get ovca and that whatever you decide you have a long and healthy life.  Marie