Is Anyone Considering Oophorectomy instead of Tamox?
Comments
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Leklov= I just found out I am a poor metabolizer of tamo. have been taking it for past 4 months without any problems. and now facing the need to have a oophorectomy. or chemically placed into menopause I am only 39. I have appt with my onco Monday as she is having me do a bone density test this afternoon. With this oophorect comes bone loss-osteoporosis and there is a increase in cardiovascular risk. You fix one thing then get another. I have no opposition to having them out. I want to do everything I can and thought tamo was right for me. The ooph can be done laproscopically or if problems will need to be an open procedure- which usually includes longer recovery. Will be interested in your course of care. Will know more monday. Lisa
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Lisa - Thanks for your quick response! As you can see, I'm still on too. Seems like I spend a lot of time on BCO. I have so many questions. Sorry you couldn't take the tamox. I don't want to take it but I certainly understand why others choose to. I have heard of the bone loss and cardiovascular risks. It is so true about fixing one problem and causing another. Makes it so hard to make a decision about anything. I will ask my OBG next week for a bone density test. I too have no problem losing my remaining ovary/tubes. I know it will throw me into menopause but so will taking tamox, at least the symptoms. Might as well go thru it once, right? Let me know how Monday works out for you. Best of Luck!
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Hi. I am 50 :''Elizabeth here I am going thru my 2nd reocc of DCIS last 5 yrs ago with lump and 33 rads.This new occur of DCIS was met in the same breast with alittle invasive inside DCIS. I chose to have a simple skin mastectomy with reconstruction. I did not take Tamox 5 yrs ago at my first DCIS, I met with my oncol I can take Tamox or have the OOPH. I will then go on Arimadex which my oncol said has better outcomes than Tamoxifen. I have an appy with the
OBGYN at UCSF 0831 to discuss this. Interested in your feedback. I am scared of taking Tamox.
Elizabeth
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becasue of my genetics i chose to have the oop. yes the surgery was simple but there are things to consider. You will have absolutly NO estrogen. tht has caused my eyes to be so severly dry it is interfering with my vision and ability to work. Even with plugs, restasis, and eyedrops, my eyes hurt continually. My skin is also unbearably dry.
After BC life is all about choices. I am not sure I made the right one.
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I just finished reconstruction and now am deciding what to do about this. My BS said since I had DCIS, and a BMX, I did not need to take Tamoxifen but other BS's seem to disagree. So now am wondering if I should take it to be safe (she said she would prescribe it if I wanted her to) or take out my ovaries. (I am also 50.) Neither option seems particularly appealing with all the SE's mentioned. I just wish the BS's could get together and have a consensus on something! Seems like there are so many different opinions.
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leklovessrk: I was faced with the same skepticism and fears of taking Tamoxifen. I am 43 and just wasn't ready to me in full blown menopause. I spoke very frankly with my onc about my concerns and what I've read and SEs etc. He sat with me for over an hour going over the Tamoxifen study and chances of being affected by serious SEs which my onc said is EXTREMELY rare like 2%. It definitely made me feel a lot better about taking the drug. My surgical oncologist wanted me to shut down my ovaries chemically only if I chose not to do T but recommended T over ooph. I think either way you're gonna have side effects you don't like. There is a thread Bottle O' Tamoxifen on this site where women on T talk about how they're feeling; their SEs etc. Plus there is a member CS777 who is very knowledgeable about the drug and can explain the risks in terms that are easy to understand. Also, a lot of women on this thread talk about some of the side effects they had and how most SE's went away in a couple of months. They also have suggestions for dealing with the SEs. I started taking my T this week and nothing so far.
Good luck to you, I hope you find peace in whatever you choose.
Diane
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Leklov, have you been tested for the BRCA genetic mutation? I ask because there is a study finding that if you are positive for one of these mutations, removing your ovaries increases your life expectancy. However, if you don't have the mutation, an ooph actually lowers your life expectancy. I recently went through the process of deciding whether or not to have an ooph (I finished my five years of tamoxifen and had to go into menopause for an AI) and i really agonized about this. My onc didn't think much of this study i referred to but what it told me is that our ovaries do more than just provide estrogen, they do other things that aren't well understood but seem to serve health and well-being. I concluded that removing my ovaries was a greater unknown than shutting them down with zoladex, so I decided to go with the zoladex instead. It seems to me that removing your ovaries is a far greater unknown than taking tamoxifen. Remember you can try tamoxifen and go off of it if there are major problems, but an ooph is irreversible.
A gynecologic oncologist is absolutely whom you should see but a word of warning there. I went to one and he poo-poohed the possible side effects of an ooph and I realized that he sees so many women with ovarian cancer, or at risk for ovarian cancer, that he is biased against, well, ovaries. I have healthy ovaries and I don't have the BRCA mutation, which I think is not his typical patient.
The most important thing with your family history is to determine if you have the mutation.
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I would never, never, never NEVER consider oophorectomy with only DCIS. It's being discovered more and more just how important the ovaries are not just for ovulation but for many other aspects of health. As Lisa said, removing both ovaries causes other problems, but I don't think we even know the half of all the problems it can cause.
I went to one and he poo-poohed the possible side effects of an ooph and I realized that he sees so many women with ovarian cancer, or at risk for ovarian cancer, that he is biased against, well, ovaries.
As a man, he's at risk for testicular cancer, so maybe he should have his testicles removed. Sorry, but I get really TICKED OFF at the bias toward taking organs out right and left. Yes, I realize that it's sometimes necessary, but do proactively remove ovaries just because you "might" get ovarian cancer someday is akin to amputating both legs because you "might" break one someday.
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I would try the tamoxifen first before having an ooph. Like Member said - you can stop taking the tamoxifen but can't reverse the ooph. I was on tamoxifen for almost a year and didn't really have any side effects to speak of. I am now on Arimidex. Some people do have side effects and some don't. You won't know that unless you take it and maybe you'll be one of the lucky ones that do not get any side effects. Good luck in whatever you decide.
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I am going to have either my ovaries shut down or an oophorectomy. The reasons I am too scared to take Tamoxifen are related to my family history. SE: blood clots - my mother has been diagnosed wtih thrombophlebitis 30 years ago (she is still alive and doing well). SE: uterine cancer - my maternal grandmother and great-grandmother (her mother) both died of metastasized uterine cancer - the kind that took over in two months. SE: colon cancer - my great-aunt had colon cancer - she did not die from it, actually lived a good 35 years after getting her colon removed, but lived all her life with a colostomy bag. As an interesting fact, my BS mentioned that in general women who had breast cancer are more prone to get colon cancer as well. He said he is still studying the why's and how's of this, but right now it's on the back burner as he is very involved in a study using microwave tumor ablation to save the breast (you can read here http://newsok.com/breast-cancer-treatment-shows-promise-in-trials/article/3432595.). He totally agrees with my decision, there is still for me to decide which of them I will do.
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A good alternative might be to have Lupron injections to shut down the ovary without completely removing it. It is a temproary approach without the life long side effects. If the side effects are too much to bear, you can always go off of it. If you have the ovary removed, you can never get it back. I had horrible SEs with Tamoxifen. It made my life unbearable. I am now discussing this option with my onco. Let me know, others, too! I'd like feedback from ohters who have done something other than Tamox. Thanks for the help here!
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My grandfather died from colon cancer and I've looked into the link with breast cancer. What I was told was that having had breast cancer increases your risk of colon cancer, but only very slightly. had a colonoscopy at age 43 for this reason, but that was probably not necessary.
I didn't focus on the fact that OP had DCIS, I agree, an ooph is overkill. Except if you have the BRCA mutation. In that case, the risk of ovarian cancer is substantial, and that is not a cancer you want to mess with.
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Yes, if I only had DCIS, I would definitely not consider that. And especially with a DCIS grade 2 and that small - and 0 nodes.Those are too big guns for this doagnosis, in my book. Unfortunately, my diagnostic was different. I still dont' want to use too big guns, just in case. But of course, that is my opinion.
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Thank you all for your responses. I mean no disrespect to those of you who refer to me as "only having DCIS" but cancer is cancer and I sure feel like I have cancer as I am going thru the same procedures as those of you with LCIS, IDC, etc. Part of my motivation for having an Oops is my mother died from ovarian cancer and also had breast cancer (30 years ago). I am scared of following in her footsteps. I will look into the BRCA test. Tamox has so many SE but I realize that so does having the Oops. I have not heard that having a Oops shortens your life. I will have to do some research on this. But, I am sure that taking Tamox for 5 years doesn't extend ones life either. No one knows what the long term effects of taking Tamox are since it has only been used for about 30 years. How does anyone know what will shorten your life? Never heard of the colon cancer thing either. Man, so much to think about. I wonder if all this research funding would be better spent on actually trying to find a cure for BC? I guess in the end, it is a personal choice that you have to be comfortable with. I am still interested in hearing from the ladies that are seriously discussing the OOps option with their doctors. Let's keep in touch. Have a great weekend!
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Oh dear, my darling, you got us wrong. It wasn't in any way trying to make it sound like you have it easier or trying to minimize your diagnosis. Heaven only knows how hard it is to hear that DCIS diagnostic (that is what my first diagnostic was)! When we say "only DCIS" we mean it in the sense that some treatments would be overkill, and would bring more risk of other problems that would outweigh the benefit. I totally understand youin wanting to do ooph instead of Tamox, but the thing is, with ooph you would still need to take an Aromatase Inhibitor. It's not just your ovaries who make estrogen. Believe me, I learned it the hard way, as I had the same fears of Tamox and I thought that "ok, if I remove my ovaries then everything will be peachy and I don't need anymore treatment". The ooph and AI's bring in another serious side effect you need to consider: bone mass loss. The estrogen is the one who makes your bones strong, that is why at menopause women are prone to osteoporosis.
It is a hard decision. Honestly, myself I am leaning more towards the chemical shut down of ovaries (with Lupron or something similar) and AI, after all, I'm only 49 and don't want to have the risk of hip fracture above my head at all times.
I hope you don't mind anymore the "just DCIS" thing and you understand why we are saying it.
Hugs
Day
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All cancer treatments have other adverse effects on health. So they have to be worth it. They don't recommend chemo for everyone because if our cancer is caught early enough the benefits won't be worth the risks to your health. So when people say "only DCIS" they are wondering if the treatment is too much given your diagnosis. Frankly, I think the side effects of tamoxifen are overstated on these boards and the effects of an ooph are understated. I was really surprised when I was exploring this option how bad the SEs of an ooph can be and also how common. And I know from taking tamoxifen and from my friends who have taken tamoxifen how easy it is for most of us.
BUT you have a strong family history of breast and ovarian cancer. I am surprised no one has recommended the BRCA test for you before. If you do have the mutation, if could save your life to have your ovaries removed, so its a completely different story. And with your family history, even if you don't have the mutation, it may be that you have enough of a risk of ovarian cancer that you should do this.
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Just wanted to thank everyone for all the great information! I swear we will all be ready for medical school when we are all done with the BC battle. My BS suggested I have the BRCA test but she could see I was overwhelmed with getting through the BMX so suggested we address it after I was done with all that. I can see now that I was getting ahead of myself and that is where I need to start before I even think about Tamox or ooph. Thanks!
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BTW, don't forget that if you have unacceptable Tamoxifen side-effects (I did), remember that there are other Selective Estrogen Receptor Modulators (SERMs), like Evista. While many of the side-effects listed look the same, I experienced them on Tamoxifen, but not Evista.
Something else to try before considering an ooph and an AI.
HTH,
LisaAlissa
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I mean no disrespect to those of you who refer to me as "only having DCIS" but cancer is cancer and I sure feel like I have cancer as I am going thru the same procedures as those of you with LCIS, IDC, etc.
I'm the one who said that, and my diagnosis is DCIS -- mine was a lot larger than yours, so I won't apologize for referring to myself as "only having DCIS." DCIS is not life-threatening and although it's cancer and must certainly be removed from the body so that it doesn't become invasive, I was giving you my honest opinion that with my current diagnosis of DCIS, I would never, ever consider having my ovaries removed (unless I had other specific reasons to), and I stand by that opinion.
If your main concern is the side effects, when both ooph and Tamox have side effects, but one stops after five years and one is permanent and irreversible, it just doesn't make sense to me to go with the "big guns" first that is completely irreversible. Of course, as others have said, if you are positive for the BRCA gene, then that's a different consideration.
Here's the thing. There are other ways of preventing cancer than having your ovaries removed. A lot of us believe there are many diet and lifestyle changes we can make that will minimize our risk of getting a recurrence or a different type of cancer. In fact, I think even someone going the 100% medical route is crazy not to make diet/lifestyle changes too... if a person developed cancer, their body is obviously an environment that is friendly to cancer, so why rely on just radiation etc. to prevent cancer while continuing to keep that cancer-causing environment? (I know, I know, plenty of people ate healthy and exercised and still got cancer, yadda yadda yadda... I thought that about myself when I was first diagnosed... then I dug deeper and realized there were MANY ways I had set myself up for cancer, and I've reversed those now, even though my DCIS is hopefully gone now thanks to a good surgeon. Why keep eating/drinking/living the way I was and set myself up for more DCIS, or worse, to appear?)
All that is to say, I hope you're exploring every option for having an anti-cancer body that will naturally fight off cancer, in addition to whatever medical interventions you decide on. I am almost exactly in your shoes diagnosis-wise, with the exception of the possible higher ovarian cancer risk (for which I do hope you'll have the BRCA test) and that my DCIS was much larger. All I do, and all I plan to do, is surgery + diet/lifestyle to keep my estrogen in check naturally... no Tamoxifen and certainly no oophorectomy.
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I agree with everything Crunchy and Member said, but also wanted to add that being thrown into menopause via an oophorectomy can also adversely affect your sex life. You not only lose estrogen, but testosterone as well, which is what controls libido and sensations.
And while DCIS can certainly lead to cancer, it is different from IDC. I know women who had DCIS and they were told it was their choice whether or not to even take tamoxifen. Both chose not to, and they are doing fine years later. With IDC, oncologists don't usually present it as much of a choice. It's more like, you need to take antihormonal therapy.
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Crunchpoodlemama - you don't have to appologize for anything you said. You have the right to say what you want. I don't have to read anyone response but I am sure glad I do. I just get a little annoyed when I read "you only have DCIS" and I have read it on many occassions on these discussion boards. In any case, I am interested - did you have a lumpectomy and Rads?
Day - I appreciate your response too. I am 45 years old and premenopause so my only option is Tamox or take nothing. My Onc says it would be too risky to do nothing. That is why I am considering the Ooph. I really don't know what to do. I figure I already have one ovary removed and I still got cancer. If I remove the other maybe I will have no more cancer. I just can't take the Tamox.
I am definately asking my OBG about the BRCA test. I was offered it a few years ago after my mother died but refused. I just didn't want to know - WELL now I know (I did get cancer). Won't bother me to know now if I carry the gene. I think I will be relieved to know.
Thanks again for your invaluable information!
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Thanks, leklovessrk! So far I've just had lumpectomy + reexcision, no rads, but it seems that my doctor still missed a few microcalcifications and is now recommending mastectomy. I think I may finally do that (no rads) and get it over with once and for all, if I can have my reconstruction done by Dr. Khouri (who does micro-fat grafting to reconstruct entire breasts -- so, no implant, no flap etc.).
Is the reason your onc said it would be too risky to do nothing b/c of your family history of ovarian cancer? or were you given some type of test/index to show that your personal risk of recurrence would be high without Tamox?
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I notice a great deal of women here have suggested they wouldn't ever consider the ooph for DCIS well that is EXACTLY what a cancer center here in Arizona advised for me - with only DCIS and a neg. BRCA! They (medical science) don't accept the idea that the ovaries are of any use after our child bearing years.. but I chose not to have mine removed after speaking to a well versed gyn about how important the ovaries are to a women going into menopause as well as the smaller gains after menopause.. I also refused Tamoxifen.. The reason that it was suggested by the cancer center was because of the families STRONG potential for hormone cancers, including my father who died from breast cancer. I'm learning that those suggestions are being made on a day to day basis because they truly do not know the tie ins - these recommendations are being made out of fear (medical fear - probably of litigation! IMO).. They can quote potential statistics but they are just not strong enough to alter my body any more than it already has been altered.. I probably should have taken more time before accepting the recommendation that I have both breasts removed as well.. today, with the info I know I wouldn't have had a mastectomy and I certainly wouldn't have the oop!! Good luck ladies, we are all asked to make these decision when we are so vunerable and frankly afraid.. please take the time to know your own inner voice and hear what it is saying!!! Best, Deirdre
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leklovessrk - I understand completely your fear because of your family history of BC and ovarian cancer.
I was diagnosed on Nov. 2, 09 with very small 4mm IDC in right breast. I opted for bilateral mastectomy because of fear of BC due to painful fibrocystic breast for years plus mother and sister had BC. Pathology report came back with three tumor in right and one in left...I was happy to have done BLM!
My onco sent me for pelvic exam prior to start tamox and report showed solid mass in right ovary...Again, my fear led me to go for total hyst/ooph, except that in this case I should have waited a bit longer and not lef fear control me, wait till the shock from BC diagnose had faded some...I had cysts in both ovaries and my uterus was double its normal size due to fibroid but ALL was benign.
Maybe it was good thing what I did but now the side effects make me wonder whether it was the right choice. I'm going through horrific hot flashes,serious vaginal atrophy, very painful intercourse, and total lack of libido. My onco said I don't need any meds (tamox or Als) because ooph is already a treatment. She would never recommend it as a treatment by normal ovaries, though! She did put me on Effexor (antidepressant) to work on hot flashes and Estring (vaginal estrogen ring) to help with vaginal atrophy.
I'm basically through with BC ordeal -Had breast reconstruction and they look nice, didn't need chemo, rads or meds...All is great EXCEPT for the horrible side effects of ooph!!
I wonder every day now about my bones, short life, cardiovascular disease, my sex life, etc...PLEASE make sure you get very good 2nd, 3rd opinion, ultrasound, MRI etc to help support your decision.
In the end it needs to be what works best for you and your own peace of mind. As for me, nobody could have convinced me of any other option. Best of luck to you
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Crunchypoodlemama - I had a lumpectomy and reexcision too. I chose Rads because I was told by my surgeon and Onc that it was standard treatment for DCIS. They definately pursuaded me to have a lumpectomy versus MX. They thought that the MX was overkill. I am going thru Rads right now - day 12 for me. Haven't had much trouble so far. My Onc said that "it was too risky to do nothing" because of my family history and because my cancer was ER/PR+. Guess he figures if I get a re-occurance, it will probably be the same.
Deirdre - So you are not taking Tamox either? Just curious, did you have DCIS? So sorry you think you made the wrong decision to have a DB/MAX. Guess we never know what the right decision is for us. I am comfortable with my decision to have a Lumpectomy with Rads. I am just having the worse time making my decision on Tamox, Ooph or nothing. I just want to scream!
Erika09 - thanks for sharing your story. You have been thru so much. You are the first lady that responded that actually had the Ooph. I also have a small cyst on my remaining ovary. Have had it for many years but it hasn't changed in size. So sorry that you are experiencing all those SE from your Ooph but you would probably have had some of the same if you had decided to take the Tamox as I am sure you have read on this board. I do think that some women experience many SE and some don't have any or very little. It is probably the same for woman that choose Ooph. As far as libido goes, I have had a lack since this whole cancer thing happended. Sex is practically non exsistant! Hard to focus on making someone else happy when I feel so sad sometimes. I hope you are able to get past all the thinking about what could happen down the road. Just get back to thinking about enjoying life again. That is what I am hoping for very soon. I meet with my OBG on Friday. I have so many questions for her.
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Erika09, I commisserate with how the system seems to rush us to make decisions and we're scared so we go thru with things we wouldn''t have a month later. The variety of recommendations people get is huge. I notice many people on bc.org have their surgeries first and then get on the internet.
I'm so glad you got the Estring. Is it helping with the vaginal atrophy? Or libido? Have you looked into the progesterone thread? That can help with libido. A number of us can vouch for that
Hang in there.
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Hi,
I did have an ooph instead of taking tamoxifen.Not by choice though,I developed a deep vein clot shortly after my mastectomies and was tested for blood clotting disorders. I have 2.One side effect of tamoxifen is it can cause blood clots so I was told by my ONC I would benefit the same by having my remaining ovary removed as I would taking the tamoxifen for 5 years so thats what I did. My mastectomies was Nov 6th 09 and my ooph was Dec 15 09.I am going through the hot flashes etc.that comes with menopause.I had DCIS in right breast and ILC (2 tumors) in the left breast.I would do the same again to protect myself from blood clots.
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leklovessrk: Yes I do (did?) have DCIS but still, again because of the strong family history, there was a very hot debate over whether I should be one Tamoxifen or not by all of my doc's.. When all was said and done I made the decision not to take it. The majority of risk was removed once I had the bi-lateral mastectomy anyway, but still the cancer center wanted me to move ahead with the ooph as well as start on Tamoxifen.. As you say we just never know.. but I could have done a better job with my decisions if I had included a psychologist into my portfolio of specialists <g>... someone who would help me hear my own voice when everyone elses SEEMED more important.. Good luck, make sure your own thinking is clear and that you hear that wonderful, informed voice inside YOU before making any decisions.. When it comes to removing any of our anatomy we need to step back and get a better perspective of our own loss and what this will mean for us (not some grand research that each doc is suggesting we use as our gauge but what we need and want out of life!).. Best, Deirdre
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leklovessrk - I realized you have two threads on the same topic. I didn't notice at firt and answered to both. Sorry for repeating myself!
I'm glad you've been doing a lot of learning before you make your decision. Good luck! Erika
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Erika09 - I have another thread on the same topic? Man, I must be having a Rad moment. Where is it? I would like to read your response. Did you start having the SE immediately or did it take a while? I have this huge list of questions to ask my OB tomorrow. PS. Glad they look nice! : )Deirdre - I hope to make the best decision possible for me. I do feel like I am in a race against time. All this pressure to decide what's next. I am scared that I won't make the right one - that I'm not in the right frame of mind at this moment. But, I am afraid to put it off. Decisions! Decisions! Decisions! You are right, I have to step back and really process all this information and try and make the best decision for me and my body. Ugh!DCF1994 - Gald to hear from another Ooph lady. Hope you don't mind me calling you that. Wow, you made the decision quickly to have the Ooph. Two huge surgeries in a months time. I am glad you think you made the right decision. Makes me feel better about my possible decision. Have you had really bad SE?Have a great day Everyone!
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