Should have a Hysterectomy, Oophorectomy and another mastectomy

Options
bel
bel Member Posts: 8
edited June 2014 in High Risk for Breast Cancer
Should have a Hysterectomy, Oophorectomy and another mastectomy
· Share on FacebookShare on Twitter

Comments

  • bel
    bel Member Posts: 8
    edited February 2009

    Should I have a Hysterectomy, Oophorectomy and another Mastectomy

    I wondered if anyone else has had a Hysterectomy due to breast cancer and were pre-menopausal.

    I have to decide if I should have a hysterectomy /and/ or have my ovaries removed, /and/or another mastectomy.


    My concerns are about further health issues in the future that are not cancer as well as cancer returning.

    I may have already gone into the menopause, due to the chemotherapy, but don't know yet and if I have a hysterectomy, will go into the menopause for sure, having had breast cancer though, have been told by my doctor that I can not take HRT.
    The thing that I find hard to deal with is that the oestrogen looks after your bones and heart.
    Without it, the risks of Osteoporosis and Coronary Heart Disease are high.
    The oestrogen controls the fats in your blood, which is needed to maintain a healthy heart and without it, the process of heart disease can start and heart attacks can occur.


    I can take natural things such as black cahoosh etc, that's not a problem, but they are for symptoms like hot flushes, as I can't take HRT, I am concerned about the heart and bones and am not sure if anything else can replace HRT or real hormones. It's something I am trying to educate myself about, as I say to make informed choices.

    Any advise would be really appreciated. Thanks,

    · Share on FacebookShare on Twitter
  • Husband11
    Husband11 Member Posts: 2,264
    edited February 2009

    Excellent questions because of the need to balance the different concerns.  I know they are currently studying ovarian suppression in premenopausal women in what they call SOFT trials to see whether it confers benefits.  My wife is asking the same question as you.  How far do you go in attempting to reduce risk of recurrance, how effective is it, and what are the detrimental effects?

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    I chose to have a total hyst after beginning Tamoxifen for my ER+ diagnosis, partially due to my being a DES daughter. It was an estrogen given to pregnant women for a time to help prevent miscarriages. Didn't work, but my mom had 4 miscarriages prior to her 1st child (me!) and took it. The drug gives me a higher risk of cervical and uterine cancer. When I saw that Tamoxifen also increased that risk, I asked my onc and gyn about the risk and a total hyst. Both said, go for it. I had the total hyst and then switched to Arimidex. So, went into chemopause, then had the hyst. With ER+, I cannot take HRT. Have been ok since, however. Am now off Arimidex and the SEs of that were much greater than my SEs of being estrogen free...

    · Share on FacebookShare on Twitter
  • bel
    bel Member Posts: 8
    edited February 2009

    Hi burns,

    Can I ask how old you were when you had the hysterectomy ?

    Arimidex may have side effects, but my mum was worse on Tamoxiphen and I fought with her specialist to get her on to Arimidex instead, it was a lot better for her.

    Thank you for replying, it is good to hear what others have experienced.

    I have such big descisions to make.

    Bel

    · Share on FacebookShare on Twitter
  • louishenry
    louishenry Member Posts: 417
    edited February 2009

    Hi Bel. I hope this helps... I had a total hysterectomy this past November. So far, so good. I have had bad fibroids that plagued me for years( huge) and tamoxifen made them grow at a faster rate. I am 47 and pre-men. I knew that if I was going to continue the tamox ( I'm too much of a chicken to quit..I'm very afraid of getting invasive), I would have to get my uterus out. In the 11th hour, I opted to take the ovaries as well. Granted, it's only been 3 months, but I feel fine. I get night sweats and hot flushes during the day. It's ok . I sleep with a fan next to my bed. I live in Chicago, so it's freezing right now, but I bet the summer will be tough. I am dry vaginally but I use astroglide. I just had my annual Feb. bloodwork, and my numbers did not change. I had a baseline bone density test that was very good and will have them every two years. I will continue to eat as well as I can ( I love my wine, had to cut back) and excercise. I have always been a runner.  So... instant menopause has been ok so far. I will stay on tamox because nothing else has been approved for DCIS. Good luck, Nada

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Hi, Bel. I was 49 when diagnosed. Had mast/immed TRAM, subseqent chemo and lymph node dissection in 2004 and total hyst in 2005 at 50. I had no symptoms of entering menopause when diagnosed, but of course went into chemopause. Good luck with your decisions. Hugs and prayers to you.

    · Share on FacebookShare on Twitter
  • kimbly
    kimbly Member Posts: 398
    edited February 2009

    I am 47 and was diagnosed at age 46.  I am now scheduled for a oophectomy march 25.  This was advised by my oncologist and the gyn too that is very knowledgeable about breast cancer.  I am on tamoxifen at the moment and my onc wants to switch me to arimidex once the ovaries are out.  I however am afraid of all the SE, i have very few with  the tamox.  I have a friend who had crippling arthritic pain in her hands and went off the arimidex and back on tamox, she had her ovaries out about 10 months ago.  I was pre-menopausal or possibly peri menopausal before chemo, the chemo put me into menopause and I have not come out yet. 

    · Share on FacebookShare on Twitter
  • Annabella58
    Annabella58 Member Posts: 2,466
    edited February 2009

    Hi  Bel:

    I hope this helps you...I had IDCIS at 44, almost 45, and a lumpectomy and radiation.  5 years tamoxifen.  Then 7 years later, a new primary cancer, a mtxmy, reconstruct, chemo and now arimidex.

    I am opting for a hysterectomy/oopharectomy as 1. 5 years exposure to tamoxifen and 2.  I feel like a ticking time bomb.  Since I am now on lupron, and arimidex (STILL not in menopause, and heavily extrogen +++,) to keep me menopausal, it's indefinite Lupron or ooph/hyst.  Since lupron and arimidex cause lack of estrogen anyway, and since after menopause, we have less estrogen, the lack of it, and the subsequent heart and bone issues, are nil for me.  It's kind of a wash.

    If you went into menopause naturally you would have these issues anyway.  Since the average age of women going into menopause is 51, I'd go for it if you onc says its a good idea.  My fake menopause isn't too bad for me.  And i was told under no circumstances to take anything, they mentioned black cohosh, etc., as major no nos, due to estrogen like effects on me.

    I have researched extensively on the bone loss and the drugs for this actually don't help much.  The bone density they give back is poor quality, leading to fractures down the road.  Much better off with calcium, magnesium, vitamin D, Omega 3s and weight bearing exercise to ward off all these ills from menopause related issues.  That and weight control, they tell me. 

    This stuff all happens anyway as we get older, but our lifestyles can help alot!  Good luck with your decisions.  Oh, I am also getting a prophylactic mastectomy ASAP, as i am so done with this cancer stuff and all related issues!!! But that is a personal choice, not dictated by necessity.

    Good luck to you!!

    · Share on FacebookShare on Twitter
  • danix5
    danix5 Member Posts: 755
    edited February 2009

    I hade total hyster oopher to avoid taken tamox.  I will be honest sleep problems with hot flashes started around 2 months out.  Did surgery May 08, then bone pain started 5 months out.  They are hard side effects some days others not so bad lack of sleep the worst.

    In the end all worth it to me to reduce risks of further cancer.  I only had DCIS but had two atypical hyperplasia tumors and 16 tumors between both breast and very very strong possibility if I waited on bilateral I would not be so lucky next time.

    I did it and am happy I did, but taken out those parts does change your life and you need to be prepared for those changes.

    PM me with further questions if you would like.

    Dani

    · Share on FacebookShare on Twitter
  • Daudine
    Daudine Member Posts: 221
    edited February 2009

    I am 38 and BRCA-1 positive. My mother died from a second breast cancer at 64, first one at 51. My aunt died at 42 of breast cancer another one at 38 from lung cancer, an uncle at 51 from colon cancer.

    I had my ovaries removed last March and I had bilateral mastectomy with reconctruction last May though I have no cancer. My chances were too high (90% breast cancer and 65% ovarian cancer). I don't regret anything though it was a hard road to take.

    · Share on FacebookShare on Twitter
  • LMDuncan
    LMDuncan Member Posts: 715
    edited February 2009

    Hi

    I am  42 and to lower my rate of occurance I am opting to have my ovaries and uterus out to guarantee I am in menapause.  As I sit now I am 50/50 for recurance and to put my body into menopause and go onto an AI then my chances or recurrance will be less.  We all have to make choices and to be comfortable with the ones we make....it is a hard road to travel but it must be done.

    Lori

    · Share on FacebookShare on Twitter
  • suechenwenny
    suechenwenny Member Posts: 4
    edited March 2009

    Hi,

    I was dx with BC at 37.  I opted to have bilateral mastectomy for fear of having to face it again in the future.  Thank goodness I did.  The lab results showed LCIS in the right side which was removed prophylactically and this did not show on the mammo.  My onc recommended genetic testing, turns out I'm BRCA2 positive.  He then suggested total hysterectomy and oophorectomy.

    His first question was if we were finished with having children.  Although we were it was still a sad decision but one that I had NO DOUBT I had to do.  I wanted to be here for the 2 children that I already had.  I have not regretted that decision,  you always have that baby love though.

    The side effects of hot flashes and lack of sleep have disappeared. It has been 2 years since my hyster/oophr this month.  With weight bearing exercise, eating right, calcium supplements I hope the side effects of early menopause can be fought  better than I could have fought what might have happened had I let estrogen feed a new tumor.

    I hope this helps you.  No decision is easy.  You need information and then what is best for your life.  I wish you the best. 

    Wendy

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    I was pre menopausal when I had mine done.  It was done after my first breast cancer diagnosis, at 32,but before my second on.  I had a total abdominal hysterectomy done - took it all.  I had no children before hand.  I took black co hosh, and still do, to help with the hot flashes, but, I don't know why, I was able to go back to work after two weeks.  (I now think I asked to go back too soon.)  Anyway, it's a challenging decision.  I have no regrets.  I would suggest checking out the 'hyster sisters' website.

    · Share on FacebookShare on Twitter
  • bel
    bel Member Posts: 8
    edited March 2009

    Thank you so much ladies for your valuable time and insights into what I might have in store for me.

    I really do appreciate it. I am still not too sure what to do, I have a meeting with my oncologist soon.

    My genetic testing came back negitive, yet my mum had breast cancer 4 years ago, her mum died of ovarian cancer and one of my mum's cousin's died of breast cancer and another cousin has breast cancer.

    I know I am still high risk because of this.

    I will have the second part to the genetics testing called deletion screening/MLPA and see what that shows.

    A friend of mine had a similar family history and the main genetics test came back negitive too. She then had the second part and it came back positive for BRACA1 !

    This is why I will have it done too.

    I also have to have tests to see if I have a chemo-induced menopause too...........

    Talk about rolla-coaster ride, i want to get off !!!!

    · Share on FacebookShare on Twitter
  • lilith
    lilith Member Posts: 543
    edited March 2009

    We all have to make our choices.

    I was 43 at DX, have BRCA2+ and of course an ER+. So, I had the ovariectomy, and the bilat mastectomy.

    I was for one year on Tamoxifen, and after a while my hot flashes really abated. Then I had the ovariectomy - and switched to Arimidex. I tolerate it well, only issue I have is that my hot flashes are back! quite embarassing when you do business... you are tagged as "the lady going through menopause", and to say that I am still quite young for that.

    On suggestion of my gyno, I didn't have an hysterectomy, because the risks there are much lower once off Tamoxifen... and while it can be monitored easily (yearly check-ups), not taking all off protects apparently against organ descents (and preserves a normal sex-life).  

    · Share on FacebookShare on Twitter

Categories