Prophylactic Oohrectomy WTF?
Comments
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I have been diagnosed with BC twice; once in 1989, 2cm mass IDC, neg nodes (6 months CMF, mastectomy and ax node resection). A routine breast MRI was suspicious so they did a needle loc bx which came back DCIS with microscopic mets to the sentinal node. I had the works again, mastectomy, ax node resection and now am in the throws of Ariamycin and Taxol.
It has been recommended that I undergo a prophylactic oophrectomy and hysterectomy in August.
I do not know how I can ever feel like a woman again if I go through with this.
How will I handle being catapulted into menopause after having had bilateral mastectomies?I know that I am genetically predisposed to both ovarian and uterine cancer, but I am afraid that it would be the stick that breaks me.
I would like to hear from you ladies that have either done this as a preventtive measure or are contemplating the same and how you coped with
emotional damage.
LA
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Hi LA,
Wow, I am not only contemplating doing those I am actively bugging my drs. day and night to get that done!!! I wish they would listen, I'd so do that in a second, as I didn't have the genetics, but I had your scenario, but opposite. Only one boob and now a foob on the left instead.
Sweetie, your womanliness is not your breasts, your uterus, your ovaries. As Robin Roberts put it, it is the beautiful light that shines from within. This is just internal equipment to get babies here, and if you have not had children yet, or want them, it really makes no difference whether they grow under your heart, or in it, if you adopt.
They are yours.
The "world's most beautiful woman" aka Elizabeth Taylor got a hysterectomy and an oopharectomy. No one could call her less of a woman and the husbands to prove it.
You are a girlie girl, but you are not your baby making equipment.
None of us are. We are alot more than baby machines!!
Go get it, and kill the lurking beast so you can be your feminine, lovely self for a long time!! And nice and safe, too.
Good luck to you.
Annie
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Please check out www.facingourrisk.org where there is a message board with many women facing the exact same thing you are. You will find much support there. Good luck to you.
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Thanks girls.
Annie, you gave me goosebumps!!!!
and praise the lord I was blessed with two children 7 years after my 1st BC diagnosis. So you're right, maybe I dont need them!!!
XOXO
LA
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But Oh, what about surgical menopause????????!!!
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Hi,
I have been on chemical menaupause for the last year, I don't think that when I have surgery in june it will change much. Hot flashes and all.
Good luck
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Dear Super
You do not mention your age. I was Dx in 2005 at age 50. I am BRCA+ so had high risk of another cancer and OC. My feeling was- get them out, I never want to go thru this again!
As for surgical menopause-do you have menopausal symptoms as a result of your chemo?
My onc said they are usually the same.
I had no hot flashes on chemo and have been fine since my oopherectomy-no problems at all.
The most important part of being a woman is being there for your all loved ones . Yes, it sucks we have to go thru this, but we are here!
That is what my husband reminds me everytime I get down.
Also, OC is quiet- there is no real test, so once it is found it is usually more advanced. It is very differnt than BC.
You have fought this beast twice- now you should be able to move forward in your life, free of threatening tissue and enjoy being the wonderful woman that you are inside.
good luck
Susan
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I had a complete hysterectomy 4 months after being dx'd with highly er/pr+ bc at the age of 46...I had not even started menopause yet, but I made the right choice in pursuing that avenue as my gyn told me after surgery that both ovaries were totally covered in b-9 cyst and he was sure that I would have been facing issues further down the road in that arena.....
As for side effects??? I havent had any due to the immediate menopause......Im taking tamoxifen and have minor aches and pains and once in awhile I wake in the middle of the night a little warm....moods??? I havent noticed mood swings and no one else has mentioned them so must not have them right??
As the others have said here: YOU are NOT your breasts, uterus, ovaries....You are YOU and thats the important thing here......
Hugs
Jule
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As someone already said, we are not women just because of our reproductive/sexual organs/body. We are women in so many more important ways--in our hearts, minds, souls--that no surgery or treatment can ever change.I had a TAH/BSO (uterus, ovaries, tubes, and cervix) 3 years ago (not completely by choice--ruptured ovarian cysts). The immediate surgical menopause is no fun, but it is manageable. The SEs are more intense than regular menopause, but they do level off over time. Some women take Effexor for the hot flashes and get relief.
Anne
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Three years ago I had a bilateral w/expanders. No chemo, no rads, but my onc strongly recommended a total hysterectomy because my ILC is ER/PR+, and I was premenopausal. I didn't hesitate because I've watched my mom live with incurable ovarian cancer. There is a blood test for oc called CA-125, but it's not a regular test for women, and the symptoms of oc are subtle.
My surgery was an abdominal incision, but I thought it was a very "easy" surgery compared to my bilateral.
sally
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Hi Girls,
Thanks so much for your responses. They are helping me to crystallize in my mind (and soul) some of my earlier more positive thoughts on the subject.
Susan, I am 48 and have two awesome kids ages 9 and 11. No plans for more anyway, this is true. Like you, I am blessed to have a wonderfully supportive husband who happens to be a surgeon (not mine), so his understanding of the need for this is deeper than mine.
When I came home after having my second mastectomy and ax node dissection, I looked and him and said " I'm taking my ovaries out!" He was relieved because he had been wanting to approach the subject with me but did not know how.
I had come to this revelation because I never expected another BC diagnosis after almost 20 years out from the first. AND with all of my every six month surveillance I already had micromets to the sentinal node. How could this happen???
I was devastated. I am BRCA Neg but have a strong family hx of BC and sarcomas.
I guess I've made my own case for having it done, but I am going to need alot of support as I cannot help but see it as another attack on whats left of my femininity.
I know that you guys are right and I may be reaching out again. I hope you dont mind.
God bless you all,
LA
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LA,
Its ok, reach out as much and as often as you like......thats what we are all here for
Hugs
Jule
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LA,
I think your feelings are totally normal. While of course, losing are female organs in no way makes us less of a women, my 1st thought when considering this was: "It's just plain sad to lose all things female."
I've lost all female parts too except the uterus, with a bilateral mast in 06 and an ooph Feb. of this year. I've had hot flashes for almost 2yrs (some improved) with chemical menopause for most of that time and then the ooph.
Other vanity issues I thought about with menopause: Would I suddenly become a dried up old prune?
-Would my skin become wrinkled and dried out and dead looking?
-Would my hair thin and become dull with no shine?
-Would I gain alot of menopot weight?
-Would I become tired, achy with no energy?
None of these things happened. - Well I DO have to work hard to keep my weight relatively stable.
But my skin is still in decent shape, more on the oily side as it always was. My hair is still thick and has a decent amount of shine for a 50yr old. And I don't have too many aches and a good amount of energy and am able to take walks or do other activity most days.So I guess I'm just saying that there will be adjustments and very real feelings of loss and sadness, but some things won't change as much as you might fear. You will still be the beautiful women you have always been. Good luck with your decision and keep us posted.
Julie
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Hi sister, I never took hormones and truly have not noticed anything negative about menopause except dry vagina, that can be an issue.
But aside from that (and everyone doesn't have this side effect) I wish to goodness I had the ability to have my little suckers out. People with breast cancer have 4 times the chance of ovarian cancer which is so much harder to diagnose, but we are in an HMO and we can't just ask and get something, we have to have reasons.
Gentle hugs, Shirlann
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Hi Super,
I am 43 soon to be 44 and have been chemically menopausal for 1 1/2 years, not fun but necessary as I am highly er/pr+ and had a 4 cm tumour with 3 positive nodes. My s/e's have been hot flashes, insomnia and mood swings which seem to have evened out latelly. I do not have any children by choice.
<>My onocologist is recommending the removal of my ovaries and I have no problems with getting them out either, I;m already chemically menopausal so no difference. I cant wait to get those estrogen making demons out!All the best in your decision.
Your bc sister
Michele
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Thanks ladies,
Julie, they want my uterus too!!
I have all of the concerns that you listed. Nice to know that they are doable. I already have vaginal dryness so what the heck! Thats treatable I guess. I hope I dont grow old before my husband. And I hope that my father's cardiac history doesnt start to haunt me after my hormonal heart protection is gone (he died at 63 of heart disease).
With alot of prayer and support I know that I will be able to do this.
I want more than anything to raise my children and I am keenly aware of the risk of ovarian cancer taking that from me (and worse taking me from them).
God is good and I treasure your support.
Good nite,
LA
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Hi LA:
Your head seems in a really good place!!
You will still be you, your husband and kids have no feelings for your ovaries/uterus/breasts...that isn't what makes you a good wife, good mom, wonderful lady....
Boobs can be stuck on, reconstructed (and there's alot of us here who did both)
Uterus? My god, who needs or wants a period? When (if) you doubt your decision or your womanly capability look at your kids. Proof if you should need it is looking back at you.
Ovaries? Just nothing more than eggs you flush every month anyway. And if the beast is even thinking about it, well go for it.
What makes you a woman is YOU, not the equipment. Don't people cut their hair? It's not that either.
Go be safe, be happy and good luck to you dear LA.
( )
annie
Angel to watch over you ^0^
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Thanks Annie,
You're a Gem!!
I carry all of your thoughts in my heart.
God bless.
LA
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Hi girls,
I believe I am in chemopause now so maybe the adjustment will be easier when I have the oophorectomy in August. My heart is still lagging behind in acceptance even though I sheduled my surgery for August. I think that the chemopause has made my depression significantly worse, or is it the Taxol?
All I know is, this is VERY hard.....
I hope that you are all well.
LA
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Hi ladies:
Does anyone have any insight as to when they decide it is best to remove ovaries/uterus vs. chemically inducing menopause?
My onc wants to "crush" my ovaries (his words, not mine, and that is an awful way to put it even tho I don't want them!!) with Lupron. I have been on that drug and whoa it is hell to put it mildly. I'd far rather have surgery and just get the whole cancer factory out!
Why did your drs. recc'd it? Can I tell my dr. that I WANT them out?
They don't seem to have any good reason for keeping the damn things, just say they don't do it (they do, and I know they do)
Thanks!
annie
p.s. SuperMujer, I am in chemopause too, I don't notice much of anything tho. I think that it's the same as menopause...if you look at this as a natural phase of life, all you are doing is pushing it ahead a little bit
. I have heard of Taxol causing some moodies...but all this bc stuff , to be frank,can give us all the moodies. Hell, I am amazed we are not all in our closets eating our own hair. Which if mine keeps on shedding the way it's going on chemo, won't be too much of a mouthful anyway.
Bless you SM, go get 'em girl.
xoxo
annie
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p.s. SuperM;
One thing you said resonates with me...another "attack" on your femininity...I think we've all felt that with breast cancer.
But...you can become the warrior goddess we all have lurking inside us and go on the attack. Reclaim your right to your femininity!
And as a mom, well we all know the female is the deadlier of the species when her young are threatened. That is how I saw this, that my young was threatened (or my ability to raise her, she was 12) and my femininity was threatened. And I responded with"Oh really. We'll see about that."
So go use your girl power and take charge, dear SM.
xoxo
annie
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Annie,
Oh my gosh, I cannot believe how we bc sisters think alike. I had a real LOL
moment when I read your post about not having enough hair to form a mouthful. I mean my head looks like I have a bad case of leprosy. And yes, I have sat on the floor in my closet many a time crying like a baby cause I had no hair to pull out or chew on. Seems like madness in retrospect but what the heck.Your GYN needs some real manners! Geez you would think that they would have some tact after dealing with WOMEN for so many years!! My ovaries are coming out not really to reduce the risk of bc recurrence but to prevent a third cancer diagnosis which I believe is just a matter of time for me. After my second bc dx I suddenly decided to take them out (I had been encouraged to do so years ago, but refused). Like you, I need to raise my children ages 10 and 11 and this offers me my best chance to do that!!!
I think you need alot of documentaton by your docs to have the ins co. pay for a prophyllactic oophorectomy, but maybe you should talk to them about it..
I love the warrior goddess idea so I made a date with my husband for tonite
Thanks for your heartfelt support. You're a Peach!!LA
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LA,
I hope no one here gets mad at me (or more confused) over what I'm about to say. I may be the world's biggest idiot, but so far I've refused to get an oopherectomy. When I discussed it with my Oncologist, I told him that I couldn't find any data to support any additional survival benefit of an oopherectomy. In other words, there's no data out there to support that when a woman who's been through mastectomy, chemo and rads gets an oopherectomy, that it improves survival. It's only been shown to improve survival in early stage women who didn't get chemo and rads. I think about this all of the time, and with two small kids, I realize I need to make the right decisions for them. BUT, I won't do it unless I see data to support it. There can be a lot of long term negative effects from this operation. I have two BC friends who've done this. The one gal says she feels very different (not so happy, but not clinically depressed) and the other has had 10% bone loss in the last year since her surgery. In addition, unless you are BRCA positive, so far the statistics say that your risk of OC isn't higher than the general population. I go back and forth on whether or not I plan to do this, so for now I'm going to keep reading until someone convinces me with data that this is what I need to do.
Bobbie
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Hi,
I am 2 years out from bc dx. I have contemplated having a complete hysterectomy as a precaution. I had the brca tests done. Brca 1 is negative but Brca 2 is inconclusive. They have never seen a variant as I have. My gynetics counselor of course, couldn't say what I should do at this point. I just want to do everything I can to keep this beast away from me. When I go to my gyno for my pap and all next month I am going to see what she says. I have already gone through menopause (before I got the bc). What do you think? I have been pondering this for months now.
Hugs and prayers,
Candie
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One of my strongest arguments to get out of chemo was that I would be willing to trade my ovaries for that since some studies have shown that oopherctomy is as effective as CMF for early hormone positive bc. But once the onco convinced me that chemo was the way to go (TCx4) I'm having second thoughts about the ovaries. Thanks for your reflections Bobbie. That's where I am right now. And it's not something that I have to decide about right now like chemo was.
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Hi Bobby,
Good point and I could not agree with you more! An oophorectomy is not a benign procedure nor is there any good data out there on either the recurrence or prevention issue. This is also an extremely individualized decision which should be made very carefully.
I too was approached by my GYN regarding this issue seven years ago. Was tested for BRCA which was negative. At the time I had one breast cancer behind me with negative nodes in 1989 and flatly refused for exactly the reasons you've given.
Since then, my mom was diagnosed with a very rare peripheral nerve sheath sarcoma, and my sister was diagnosed with an more rare osteosarcoma. Because of this, my family was diagnosed with something called Li Fraumeni Syndrome. This is a very rare syndrome where families have occurences of these rare cancers and are at high risk for others, one being ovarian ca.
In January 2008, I was diagnosed with DCIS w/micromets and had to have another mastectomy and chemo again. I thought at that time that if I had had a prophylactic mastectomy this would not have happened. I was devastated. I was being closely surveilled with breast MRI alternating with mammography and the mamo missed it.
Now, I do not know what my exact risk of ovarian ca is, but this is not something that I am willing to risk any chance of given the deadly nature of it. I may be wrong, but given my situation, and family history I do not think that I have too much choice. At least in my case, which I do not advocate for others as I am not an expert, it will be worth it.
I too have children ages 10 and 11 and I'll be dammed if I'll let anything stop me from raising them.. God wiling that is.
Thanks for your input.
Good luck and God bless!
LA
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Hi ladies:
SuperM (love the name) aka: warrior goddess.....
it's so difficult to know what to do, in the end you have to go where your heart leads you in this decision.
I am a big fan of the "sudden inspiration" moment in which you decide out of nowhere a course of action.
My last mammogram showed nothing. Then, on a whim, my onc said "let's get an MRI". I was opposed, and then for no reason at all, my husband and I together, in the kitchen, changed our minds. At the same time.
We think that stuff is angelic intervention or something like that, so we did it, and they found a 1.8 cm lump! totally and completely missed by mammo!!! Also missed by U/S, palpation, etc.
So, I, hairless chihuahua that I am (well, not, but less than I had for sure) am going for it if they will do it. It's the getting them to do it that is the problem.
You do what feels right to you,sweetie, I know you'll do what your best decision is! With the rare gene, and the high risk of ovarian, I don't think this is a bad decision at all for you to go this way. It seems like a smart, pro active thing to do.
Go get em gal! Be the dangerous female protecting her young!
love
annie
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p.s. SM:
You always have a choice. And you are choosing life!
xoxo
a
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SM,
Yes, you do have some very unusual circumstances and if I were in your shoes, I would do it tomorrow. You know, there are many women out there who get the oopherectomy and say it's a piece of cake. They never skip a beat. I honestly think I'm going to have one of those defining moments anniebelle is talking about, and I'll get there too.
Go get 'em!
Bobbie
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Thanks Girls,
I think that being in chemopause first will help some
. At least I wont be catapulted into a surgical menopause which is said to be worse as there is no chance for your body to adjust. I'm almost looking forward to getting it behind be at this point. Thanks so much for all your thoughts and support. There is truly no one else that can give the kind of support that you sisters can, and I am truly grateful to have you all in my corner.
Stay tuned for updates as August appproaches!
LA
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