Total hysterectomy or salpingo-ooph? Can’t decide…help!

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BRCA1
BRCA1 Member Posts: 78
edited June 2014 in Genetic Testing

Hi , I am scheduled for app with Dr regarding my prophylactic ooph and  I can't decide if I should remove uterus and cervix or should I leave it. How did you decide? What was the major point to convince you to ether keep it or remove it?

 Also, do you think at 35 it's not too early to do it? I am so confused...my mom had ovarian cancer at 47, but it was stage 3 already and it killed her. Dr recommend to wait until I am 40, but I think I am playing with the fire...what do you think?Undecided

Comments

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited September 2010

    I had my visit about a week ago.  When she asked about my desires for removing the uterus I told her that I didn't want to do it unless there was medical reasoning for it.  With BRCA2 there is no concern about the uterus or cervix.  And since I went through chemopause I'll won't be taking taxmoxifen.  There are issues with taxmoxifen causing uterine problems but that was off the table for me.  So last week I had a trans-uterine ultrasound.  If that comes back clear then we're just taking the ovaries and fallopian tubes.

    BTW - my aunt died of cervical cancer when she was in her mid-fifties.  But getting a pap smear is no big deal and I don't see any problem staying on top of anything that might develop.

    I understand your desire to do this sooner rather than later.  But I know they have concerns with taking away the estrogen too soon because it has other benefits including heart health.  Did the doc go over those with you?  Are there any options for high risk scans until you're forty?

  • BRCA1
    BRCA1 Member Posts: 78
    edited September 2010

    Yes I am doing my blood work and also ultrasound, but so did my mom and when it showed up on ultrasound tumor was already 12 cm. Very scary and it is true that ovarian cancer is silent killer. It is such a hard decision...I know I want my ovaries with tubs out ASAP, but not sure what to do with the rest or how to decide. Dr explained to me all possible complications and told me it is up to me.

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited September 2010

    Hi, I had the whole enchilada out.  I had had 5 years of tamoxifen also, but when they took the uterus, they said it was fine.

    Since you are BRAC, if it were me, I'd do the whole thing.  It's also a bit easier to do both at once.  Would you continue to worry re: uterine cancer?  If so, it makes this decision a bit easier.

    I have never regretted it once and it was a very easy surgery and recovery, altho a bit boring.

    If your mom had it, and you are BRAC+, well I'd go for it, but in the end, it is what you are feeling.

    As it was explained to me, they generally take everything at once, as it is easier that way and can be done laparoscopically. Itty bitty incisions, no scars. I did, however, keep the cervix (ask re: a "supra cervical" ooph and hyst.) as that is sort of the plug that holds it all intact.  Haven't had any issues, some sexual stuff (dryness, easily fixed).

    I reccomend a site "hyster sisters" to you that was a wonderful source of info and support to me on all of these issues.  Try to go there and they will help!

    Good luck and PM me if I can help you further.  I saw it as a  pre emptive strike in this war, not only that, but hey, I never met my ovaries, they were trying to knock me off (ER+++) and I regarded my uterus as a holiday inn that my daughter stayed in for awhile, and that's all.

    It's sure nice to be done with the periods, too :):).  And no, I didn't suddenly age, like the horror stories you hear.  I look the same as I did pre surgery, two years ago.

    Good luck in your decision making.  This surgery is not hard, it was a walk in the park compared to mastectomy.  I only ever took extra strength tylenol.

    xoxo

    annie

  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited September 2010

    My $.02 worth?  Take it all out in one surgery--your uterus does not produce estrogren, and since your are not planning any babies in the future, what do you need your uterus or cerivix for except possible problems down the line and additional surgery?

    Just my opinion.

    But I am always one of those safe not sorry people.

    Make a list of the pros and cons, go over it with your doctor, and make your own decision as to what is going to make you most comfortable.

    Warm hugs! 

    Edited to say I had uterus and cervix out figuring for me, I did not want to worry about either one giving me problems down the line--never caused any problems sexually--only Arimidex has done that!  Killed the mood so to speak.

    and I regarded my uterus as a holiday inn that my daughter stayed in for awhile, and that's all.

    Annie that has me rolling on the floor laughing!!! 

    Jane - Dance as if no one is watching!!
    Diagnosis: 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-

  • BRCA1
    BRCA1 Member Posts: 78
    edited September 2010

    Thank you for responds...I have a very stupid question, so I apologize...if cervix is gone, what does support our vagina? Is in it create issues during the sex? I did some research today regarding uterus cancer and HRT, Tamoxifen, also influence of early menstruation (mine started at 12) and I am more then happy to say good buy to my uterus.

    I would love to get rid of cervix as well, but very nervous about complications connected to the sex life (very important part for me and my husbandCool )...????

  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited September 2010

    Cervix does not support our vagina! 

    Vagina: The muscular canal extending from the cervix to the outside of the body. It is usually six to seven inches in length, and its walls are lined with mucus membrane. It includes two vaultlike structures, the anterior (front) vaginal fornix and the posterior (rear) vaginal fornix. The cervix protrudes slightly into the vagina, and it is through a tiny hole in the cervix (the os) that sperm make their way toward the internal reproductive organs. The vagina also includes numerous tiny glands that make vaginal secretions.

    The word "vagina" is a Latin word meaning "a sheath or scabbard", a scabbard into which one might slide and sheath a sword. The "sword" in the case of the anatomic vagina was the penis. Love and war, it would seem, have been connected in the minds of people for millennia.

    from http://www.medterms.com/script/main/art.asp?articlekey=5951

  • BRCA1
    BRCA1 Member Posts: 78
    edited September 2010

    Thanks ! That is very educational Wink

    There is some info i found on internet I am worried about:

    "There has been a recent trend to leave the cervix in place as more support for the vaginal vault and for improved, post hysterectomy sexual response. Some women note that orgasm, while it still takes place after hysterectomy, is slightly altered in its nature. Leaving the cervix is thought by some to preserve the original nature of the orgasmic response."

    "There is less risk of vaginal vault prolapse with subtotal hysterectomy (the vagina falling out). It is argued that the supports of the vagina are damaged by removal of the cervix."

    Very hard decision (((

  • Mountains1day
    Mountains1day Member Posts: 102
    edited September 2010

    If I had a chance to do it over again, knowing what I know now.....I would not have had my cervix removed.  Nobody told me about the possibility of "vaginal vault prolapse" and the effects of sexual response.  I valued my orgasmic responses up until having a hysterectomy.  If sexual function is important, this must be weighed in when making these decisions.

  • happymom8285
    happymom8285 Member Posts: 205
    edited September 2010

    I had the whole kit and kaboodle taken in 2000.  Not because of cancer, but early menopause and continuing abnormal paps.  I have not had any problems. No problems with prolapse or orgasms.

    If you just take the ovaries, and end up on tamoxifen, it has side effects of possible tumors of the uterus.  I would take it all.  If the cervix is gone, too, talk to your dr. about prolapse and what will be done to prevent it. But with continued and proactive gyn visits, cervical cancer would be easier to detect.

    The equipment might be gone, but the playground is still there!

    Will be praying for your decision.  Knowledge is power.

  • BRCA1
    BRCA1 Member Posts: 78
    edited September 2010

    Thank you very much for answering. After research and reading other woman experience I've decided to leave cervix. Waiting for Dr app to book the surgery now...waiting is the hardest I think.

  • westiemom
    westiemom Member Posts: 174
    edited September 2010

    BRCA1, I had salpingo-ooph yesterday. Here's the weird thing..I almost want to whisper this in writing (ha!) but i've not had a hot flash since Monday. Surgery was Tuesday and today nothing! Wonder if the surgery has anything to do with it. My luck they'll start right up again after I finish typing thisYell

    I've been on tamoxifen for about a month, so my gyn recommended a vaginal ultrasound to be sure there were no unexpected uterine issues. It turned out all was fine so I was able to keep uterus/cervix. I know this is a hard decision. I'm also Brca1 positive, we have limited choices. Go with what you feel is right for you and get "double routine" checked. Our ovaries have to go, no choice there, but I would delay removing the cervix and uterus if it doesn't feel right, now unless the ultrasound uncovers issues otherwise, then that will point you in the direction you have to take. Take care of yourself!

  • cassou1
    cassou1 Member Posts: 31
    edited September 2010

    i,too had everything pulled out of as well, also brca1+ on tamoxifinfor a year, hoping when i see my breast doctor in Nov. i'm going to tell her that i've decided to go ahead with pbm in jan. and hoping i can be pulled off the tamox.-hate the hot flashes, especially when the temp is over 100 degrees.

  • BRCA1
    BRCA1 Member Posts: 78
    edited September 2010
    westiemom, happy to hear you feel great after surgery. Wish you a fast recovery ! How old are you, if you don't mind me to ask?
  • westiemom
    westiemom Member Posts: 174
    edited September 2010

    BRCA1, I'm 47.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2010

    I had a TAH/BSO about 5 years ago (due to large ruptured ovarian cysts). I let him take the uterus as well as I was done having kids long ago (48).  Since they suspected ovarian cancer, I wanted the cervix gone as well. Fortunately, everything turned out benign, but I had to go thru immediate surgical menopause while recovering from major abdominal surgery--it was rough. Even with the ovaries removed, you can still get ovarian cancer due to microscopic cells left behind in the peritoneum (always make sure they do  peritoneal washings during the surgery). Some studies say the cervix gives support to the pelvic floor, others say that isn't true. Actually, my gyn said the support comes from lots of different muscles and ligaments, not the cervix (being a PT, I agree with him), so if those remain strong, (kegels exercises!!!!!) you shouldn't have problems with prolapses. (no problems here in the bedroon!)

    aNNE

  • westiemom
    westiemom Member Posts: 174
    edited September 2010

    So here's the latest and I'm totally sad about it. My gyno calls me this morning, she wants to know how I feel, then drops the bomb on me, turns out the pathology report came back and I had fallopian tube dysplasia, precancer. She explains what it means (not good) and in her 14 years of practice she's not encounter anyone with fallopian tube dysplasia or fallopian tube cancer, but being I'm brca 1+ it was a good thing I had fallopian tubes and ovaries removed but now it looks like I'll be back for a total hysterectomy. I will now meet with 2 new doc's next week. OMG, will it ever end? I'm an emotional wreck. I've cried most of today. I had a vaginal ultrasound before the surgery and obviously it didn't pick any of this up, hate to say this, but it makes me wonder where else is this SOB hiding out in my body. I just had to post because if anyone understands, it's all of you. I'm at a loss and so tired.....

  • BRCA1
    BRCA1 Member Posts: 78
    edited September 2010

    westiemom, I am so sorry to hear about your news. BRCA1 is such a monster, the more I read the more I am getting mad at myself that at age 34 I still didn't do any prophylactic surgeries, I am just crazy to play with this and hope that I will be ok just "watching" it.

    Good thing is you got your tubs out now and didn't wait for few years. Best of luck and stay strong girl!!!

  • westiemom
    westiemom Member Posts: 174
    edited September 2010

    Thanks Brca1, my results just further confirm and I guess validate for me that since I carry the gene mutation I'm glad I had the prophlactic surgery as it was on it's way to becoming fallopian/ovarian cancer. I so pray I won't have to have anymore surgeries, if I need to do the complete hysterectomy I will but would like to delay to the first of next year. I too wanted to "watch it" and my onc strongly suggested against it. You're very young, so I don't blame you for taking the approach you are taking.

    I attached a very interesting article below that I'm sharing with my oncologist this week.  

    http://www.macleans.ca/article.jsp?content=n4443052

  • muskegomom
    muskegomom Member Posts: 1
    edited September 2010

    I too am trying to make the same decisions on whether to do the total hyst or the ovaries and tubes only.  I am also trying to decide about the tamoxifen.  Does any one know the difference in side affects between the two and how have people that have taken the tamoxifen done in terms of side affects.  Thanks for any help

  • flash
    flash Member Posts: 1,685
    edited September 2010

    I did tamox for a short time, then did the total hyst, ooph cervix. so I could switch to ai's.  Side effects for the tamoxofin was not bad.  Instant menopause and recovery wasn't bad at all for the surgery.  Make sure they do an abdominal wash if they're doing the surgery.  It makes sure to "peel" off any stray cells.

    Hugs

  • Latte
    Latte Member Posts: 1,072
    edited September 2010

    my onc, plus my "2nd opinion onc", both want me to do 5 yrs tamoxifen even after I have my ooph, and only then switch to an AI. They both told me that tamox works for post-menopause as well, and the most impt thing is to have as many years as possible with either medication, and since they are both only prescribed for 5 yrs at this point, they prefer I have 10 yrs protection by using both. I am going to do the tamox metabolism enzyme test, because if I don;t have the enzyme then i'll skip tamox and go straight to an AI, but otherwise I will do both. I'm still doing neo-adj chemo, then surgery and rads, so I have approx 4-5 months to do more research on this.they only want me to start tamox after i finish rads.

  • MRDRN
    MRDRN Member Posts: 537
    edited August 2013

    This is a helpful thread.  I did the TAH due to a fibroid but would do it even without the fibroid.  I pretty much had to fight with my Doc to get it done and do the BRCA test !   Now I have a new medical team :)  I ended up having a curable cancer but they don't like to use that word ;)   I also choose not to take tamox.  It would not give me much benefit I was told since I Was getting the TAH and Bi Mx.  Thank God, because these side effects of insta pause are difficult.  Low dose effexor works great as many of my friends with natural menopause take.   Even after the surgery the BS said not to take HRT.

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