FINAL UPDATE IN 55/UPDATE IN 38 An honest plea for well thought out WWYD replies

[Binkandabee]

I know over the past several weeks, I've posted on here alot. This one is likely to be a long one, so bear with me as I really need some well thought out advice here.

A bit about me, in case you are unaware. I am 36 years old and was diagnosed with breast cancer in September of 2012, when I was 35. Because of the type of cancer I had, mastectomy was my only treatment option. Because of my age and family history, I chose to do a double mastectomy. I did not require chemotherapy, radiation, or a hormone surpressing regime since my cancer was not invasive. My cancer, however, was hormone receptor positive for both estrogen and progesterone, meaning it was fueled by those hormones.

I had the breast cancer gene test done and mine came back as not having the two known mutations associated with breast cancer, but my gene isn't normal, it's what is known as a "variant". Basically that means the gene isn't normal, but there isn't enough data yet to make a positive determination that my particular variant is associated with an increased risk of breast cancer. Basically nobody knows what it means.

DH and I are finished having children and I've been trying my hardest to come up with a permanent form of birth control. I haven't taken birth control pills since my diagnosis (due to the hormones) and I am completely stressed out about getting pregnant. Not only that, it's possible (but nobody knows for sure) that I may be at an increased risk for ovarian and/or uterine cancer.

I am having a reconstruction revision surgery in September and have been trying to figure out if I want to do a permanent birth control/ovarian cancer risk reduction surgery in conjunction with it.

I spoke to my breast surgeon, consulted with my local obgyn, and consulted over the phone with my obgyn in New Orleans.

Here's what my options are according to them:

1. Tubal ligation with ablation. This is the least invasive of my options. Surgery is straightforward, recovery is minimal. My ovaries and uterus are left intact and there is no hormone disruption. Is a permanent birth control only, does nothing to reduce risk of any future cancer.

2. Partial Hysterectomy. Removal of the uterus only, leaves ovaries in tact. Reduces risk of uterine cancer, but not ovarian cancer. Is a slight possibility that ovaries would fail after this and I would be in menopause.

3. Total hysterectomy. Removal of everything, uterus, ovaries and tubes. Recovery is a few weeks. Originally I had thought it was inadvisable that I have hormone replacement therapy, but my docs seem to agree that a small dose of estrogen (something less that what my body would make on its own) is fine. ETA: Technically it isn't a total hysterectomy, but a hysterectomy (removing uterus) plus a oophorectomy (removing ovaries).

I'm going to be blunt here and the ONLY reason I hesitate about either the partial hysterectomy or the total is the potential negative effect on my sex drive. I have no issues with sex drive whatsoever and I don't want that to change.

My Docs are in agreement that any of these options are a reasonable course of treatment considering my history and genetic results.

Here's where I'm at, I think...this seems to change depending on the day. I am leaning towards doing just the tubal and ablation and putting off any type of hysterectomy. My thinking is that if it's reasonable now, it will be reasonable in 10-15 years as well. The problem with that thinking is by then it may be too late :( And if it were...I would feel AWFUL about not having done this when I had the chance.

So, if you've made it this far, any advice? What would you do if you were me? What would you tell your daughter to do?

[BabyBearsMom]

First, :hug: I'm so sorry that you are going through this.

Have your doctor's discussed how they would monitor you for uterine and ovarian cancer if you don't have the hysterectomy? Could they just test you say every 6 months and then if anything looks off just do the surgery then?

I understand not wanting to impact your sex drive. It is an important part of a marriage and your own mental well being.

If it were me, I would probably do the full hysterectomy because I am extremely risk averse and I wouldn't want to worry about it later. But, that is a very personal decision, and I wouldn't judge anyone who chose the other two options or consider them bad decisions.

[wellyes]

:hug: What a tough set of choices.


I think in your shoes, I would take option 3. Like the PP, I am risk averse. I'd rather feel a sense of control in finding ways to deal with the effects of a hysterectomy versus not be able to control what's happening in my body.

[almostmom]

So sorry you have to make this decision. It must be so hard.

Just another question - If you do the tubal ligation, what sort of monitoring will they be able to do to keep an eye on any occurrance of ovarian or uterine cancers? I don't know what the survival rate is for these if the cancer is caught early. If it is pretty good, and you can have regular monitoring, then I would go with the tubal. But my instinct is this is not the case, that these are pretty aggressive cancers. On another note, I have seen my sex drive fall (for no good reason) and it is very frustrating and challenging.

I think if it was me, I might do the tubal right now, and think about the other surgery for awhile. Maybe you don't wait 5 or 10 or 15 years. But maybe in a year you'll feel like it is too scary to now know and you want to make sure you minimize your risk. Or maybe you feel calmer without the risk of pregnancy in your life, and you feel comfortable with the monitoring that your doc is doing. Or more studies come out about your gene that say the risk for those cancers is not as high.

Obviously I can't tell you what to do. But that is the way I might think about it.

Good luck--

[TwinFoxes]

What a tough decision. I also am curious how would they monitor you if you choose just the tubal ligation. That would play a big part in my decision.

I have to say, I would be concerned about sex too. It's actually one of my first thoughts reading your post. Have the doctors told you what you can expect in terms of negative effects on your sex drive?

I don't know if I could have a hysterectomy if there was just a chance I was at higher risk for ovarian/uterine. If I definitely was at higher risk, that's a different case.

[mommylamb]

First, :hug: I'm so sorry that you are going through this.

Have your doctor's discussed how they would monitor you for uterine and ovarian cancer if you don't have the hysterectomy? Could they just test you say every 6 months and then if anything looks off just do the surgery then?

I understand not wanting to impact your sex drive. It is an important part of a marriage and your own mental well being.

If it were me, I would probably do the full hysterectomy because I am extremely risk averse and I wouldn't want to worry about it later. But, that is a very personal decision, and I wouldn't judge anyone who chose the other two options or consider them bad decisions.
:yeahthat: to all of it. OP, I am so sorry you have to deal with this. These are not choices anyone wants to make.

If you decide that you want birth control, but not the hysterectomy, what about having your DH get a V so that you don't have to go through surgery again?

[Snow mom]

:yeahthat: to all of it. OP, I am so sorry you have to deal with this. These are not choices anyone wants to make.

If you decide that you want birth control, but not the hysterectomy, what about having your DH get a V so that you don't have to go through surgery again?

:yeahthat: Is there a reason a V is off the table? It seems like you've been through a lot and your DH could take care of the pregnancy worry here while you determine more about the cancer risk and monitoring. I'd expect my DH to have a V over me doing a tubal in your circumstances.

[lizzywednesday]

IIRC from other threads about this, the OP's DH has had complications with even simple procedures in the past and that makes it more stressful for them to consider anything for him at this time.

OP, I agree with BabyBearsMom about wanting to know how your docs will monitor your ovarian/uterine cancer risk/status if they do not do the hysterectomy.

Also, due to your type of cancer being hormone-receptive, I would be fairly wary of leaving organs that do produce hormones (i.e. - ovaries) for fear that their presence would exacerbate an already delicate balance in my recovering body, much like the "of course they're fake; the real ones tried to kill me!" tees that some tongue-in-cheek Survivors wear at many of the breast cancer charity events I've participated in.

If it were me, I'd have more questions for my doctors, especially those relating to hormone receptive tumors and why they feel it's OK for me to keep my ovaries.

One of my Survivor friends even avoids phytoestrogens, like the ones found in soy, because her cancer was also hormone-receptive, so I don't think it's necessarily something that should be gone into lightly, especially if it means I'm still maintaining some element of risk.

I also would like to know if there were support networks in the Young Survivors Coalition (or other groups - Y Me is another, I think) that deal with this decision - and how to handle the conjugal aspect of a hysterectomy if you ultimately decide that's your best option.

[Binkandabee]

DH is a medical disaster. He's never had anything done that hasn't had complications. I would benefit in other ways as well because my periods are long and I have several days where they are extremely heavy, almost unbearably heavy. So, I'd likely be doing an ablation at the very least anyway.

I am going to call my Dr. with some additional questions and one will be the monitoring for ovarian and uterine cancer. From what I understand now, at least for ovarian cancer, it is hard to detect as it presents itself with very common symptoms (bloating, frequent urination, etc.) I'm honestly not sure what the routine monitoring would be, but I will definitely ask about that. I also need to ask what the long term side effects of menopause at such a young age is. I believe there are bone density issues that could crop up later on in life.

About the sex drive...some additional info. I have zero feeling in my breasts any longer. They are 100% numb all over, which is completely normal for mastectomy patients. I really hate to take the risk that our sex life will be further impacted, but then again, I would hate to die of ovarian cancer. I could really use a crystal ball about now!

[Percycat]

I have zero feeling in my breasts any longer. They are 100% numb all over, which is completely normal for mastectomy patients.

Thank you for sharing your very personal story. I have never thought about this aspect of breast cancer. Cancer robs so much -- even from survivors.

Saturday, I am running in my first 5K - the Komen Race for a Cure. I am running partly in honor of a few family and friends who have fought cancer. I will remember you too.

I'm glad to hear that you are cancer free. I hope you get good advice from your doctors and are able to live a happy and healthy life.

[Binkandabee]

That is very thoughtful of you Percycat!

I wanted to mention the total loss of feeling because its essentially a given for women who have mastectomies, and it's not something I ever gave a thought to before I had breast cancer.

[AnnieW625]

Hugs. If it were me I'd probably do the least invasive surgery and let everything else run it's course plumbing wise. I have no BTDT experience with breast cancer although I know many survivors. :hug:

[ChristinaLucia]

I personally have to choose between 2 & 3 for myself. The side effects from three seem to be a pretty big drawback, but they call it the "silent killer." Good luck with your decision! It's not easy.

[gatorsmom]

:hug: What a tough set of choices.


I think in your shoes, I would take option 3. Like the PP, I am risk averse. I'd rather feel a sense of control in finding ways to deal with the effects of a hysterectomy versus not be able to control what's happening in my body.
:yeahthat: I'd choose option 3.

[Philly Mom]

:hug: What a tough set of choices.


I think in your shoes, I would take option 3. Like the PP, I am risk averse. I'd rather feel a sense of control in finding ways to deal with the effects of a hysterectomy versus not be able to control what's happening in my body.

I agree. Hugs to you.

[Globetrotter]

I think this partly depends on how you deal with things. Would it take over your life, causing you to imagine symptoms and constantly worry about testing for ovarian and uterine cancer and imaginary symptoms? Or can you take things in stride?

I am the former and, for ME, I think option #3 would be the answer because it would eliminate a lot of worry. However, I would want to be pretty darn sure that I had a strong risk before resorting to such a serious intervention. I'm sure you've done genetic counseling, no?

[Binkandabee]

Globetrotter....no, I have not had genetic counseling other than the BRCA gene test which showed a variant. That's my issue is because from what I've been told, at this point in time, nobody really knows what my real risk is or if I even have an elevated risk compared to the average woman. My Dr. says it's likely that one day these variants are going to be determined to mean something. It's just logical...my grandmother had breast cancer very young (45), my great aunt had breast cancer, and now I have. There HAS to be a genetic component going on there. But whether there is a link between my particular variant and an increase in ovarian and/or uterine cancer is anybody's guess.

Another factor I've got to consider is that I know nothing about my Dad's family. My grandmother, grandfather, and my aunt all died young from accidents. My grandmother had a hysterectomy around 50, but nobody knows why and nobody knows whether she kept her ovaries or not, although she never had ovarian cancer.

I'm definitely giving some thought as to how I would live going forward if I opt for just the tubal and ablation. I am a worrier and anxious by nature, and I'm already worrying about the guilt I would feel if I make the wrong choice here...either way.

[lizzywednesday]

... My grandmother had a hysterectomy around 50, but nobody knows why and nobody knows whether she kept her ovaries or not, although she never had ovarian cancer.

...

Honestly, I think hysterectomy at 50 was par for the course in a lot of women's medical care in the past - my own paternal grandmother had one herself for no medically necessary reason other than the fact that her docs told her to have it. It would have been a total hysterectomy/oopherectomy, because she had no menopausal symptoms whatsoever.

It was thought to be "easier" not to go through menopause naturally or something like that. We know differently now.

[Binkandabee]

Honestly, I think hysterectomy at 50 was par for the course in a lot of women's medical care in the past - my own paternal grandmother had one herself for no medically necessary reason other than the fact that her docs told her to have it. It would have been a total hysterectomy/oopherectomy, because she had no menopausal symptoms whatsoever.

It was thought to be "easier" not to go through menopause naturally or something like that. We know differently now.

That was my maternal grandmother (wasn't clear in my post)...and what you state is exactly what my aunt has said. She said my grandmother likely had a hysterectomy because her Dr. told her to.

[Rainbows&Roses]

Going through breast cancer treatment right now and thinking about having my ovaries out. Uterine cancer does not scare me, but ovarian cancer scares me quite a bit since it is so sneaky and there is no good way to monitor it. If you think you are at genetic risk, I would seriously consider getting them out.

And I would get a few more opinions on the hormone replacement thing before taking it if you go that route. My surgeon said ER+ positive women can do bio-identicals, but since everyone is freaking out about me eating soy as a vegetarian, I don't really know if she is correct.

But yes, it will likely affect your sex drive. Taking your ovaries out is usually a simple procedure so you don't necessarily need to do it while doing other surgery. Maybe you can get your insurance to pay for more genetic testing as there are a few other options out there now I have heard.

eta: or start taking tamoxifen if they will write you a scrip for it. It definitely has its list of side effects, but is less drastic though it does not solve the birth control issue.

[Globetrotter]

I like Rainbows&Roses suggestion to just remove your ovaries, since ovarian cancer is so hard to detect.
It's a tough one since you don't know for SURE that you have a risk.

[Binkandabee]

I like Rainbows&Roses suggestion to just remove your ovaries, since ovarian cancer is so hard to detect.
It's a tough one since you don't know for SURE that you have a risk.

That's the dilemma, exactly. If I knew I had an increased risk, this would be an easy decision for me. I just hate to take what could be normal, healthy organs out for no real reason. I've left a message for my Dr. to call me back, hopefully he does soon. This decision is really wearing on me.

[Binkandabee]

I wanted to add this source of information to see if it changes anyone's mind. It's an article on whether to take HRT or not, but it does a good job of explaining the risks of surgical menopause at a young age.

http://women.webmd.com/surgical-menopause-estrogen-after-hysterectomy

I really feel like I'm damned if I do and damned if I don't. If I don't...could die of ovarian cancer. If I do...could raise my risk of dying from everything else, and I could increase my chances of heart disease, stroke, and loss of memory function.

[Globetrotter]

yikes. What are the risks from only removing the ovaries? Is that an option for you?

[swissair81]

If you go for the hysterectomy perhaps you should check into the robotic version of the surgery. My OB is the assistant head of the da Vinci robotic surgery program at my local hospital and the recovery is supposed to be much easier than the traditional open one.

[Binkandabee]

I don't "think" I can do just the ovaries because then I would have to take both estrogen and progesterone. With the take all approach, I'd be left needing only estrogen. That's on my list of questions, though. I HATE that I have to make this decision. Really hate it.

[Binkandabee]

I talked to one of my Dr.s today and he said at this time, with the information that we have, and considering my age, it is perfectly reasonable to do the ligation and ablation only and monitor me for ovarian cancer as if my gene mutation puts me at an increased risk for cancer. That means, transvaginal ultrasound and a blood test every 6 months. I asked if this is the recommendation he'd give his own daughter and he said yes :) I've got one last call to make, but I really think this is what I'm going to do.

[TwinFoxes]

That actually sounds like very good monitoring, without it being too much of a burden. I think you're making an informed decision, which is really the best any of us can do! I hope your future surgery goes well.

[Philly Mom]

Sounds like a great plan to me too!!

[sntm]

I talked to one of my Dr.s today and he said at this time, with the information that we have, and considering my age, it is perfectly reasonable to do the ligation and ablation only and monitor me for ovarian cancer as if my gene mutation puts me at an increased risk for cancer. That means, transvaginal ultrasound and a blood test every 6 months. I asked if this is the recommendation he'd give his own daughter and he said yes :) I've got one last call to make, but I really think this is what I'm going to do.

I didn't want to influence too much, but I'm a breast surgeon and while all your choices are TOTALLY REASONABLE this would be my personal choice. You should do what feels right for you

[elektra]

I had read your original post OP, and is such a big decision- I was not even sure what I would recommend!
I do think you made the best decision possible at this point though. I really think it's the best way to go, all things considered. Good luck with everything!

[Globetrotter]

That sounds like a good plan, vigilant without taking extreme measures.

[Still-in-Shock]

My gut says to put off the hysterectomy, since a few years down the road, they may find a way to deal with uterine and ovarian cancers that are much less painful than is done today. It would also give you one less thing to think about in the short term. I am glad that you were able to find out as much info as you did about your breast cancer, even though there isn't enough info these days.

[lizzywednesday]

What a relief! So glad you got an answer that includes a plan for future action, Binkandbee!

I hope you do well with the upcoming surgery and this procedure.

[twowhat?]

I talked to one of my Dr.s today and he said at this time, with the information that we have, and considering my age, it is perfectly reasonable to do the ligation and ablation only and monitor me for ovarian cancer as if my gene mutation puts me at an increased risk for cancer. That means, transvaginal ultrasound and a blood test every 6 months. I asked if this is the recommendation he'd give his own daughter and he said yes :) I've got one last call to make, but I really think this is what I'm going to do.

This is what I would choose as well, given that you have a variant for which there is no conclusive data, and the folks on your side of the family who had breast cancer did not also have uterine or ovarian cancer. The monitoring sounds like a good plan. You can't predict the future...you can only weigh the pros and cons. Maybe if it helps to see a therapist who can help you come to terms with your decision to try to nip the constant worrying in the bud, then go for it.

Hugs, P & PT to you!

[ecofem]

Do you have a Gynecological Oncologist? I am not in the exact same circumstance as you are... but there are similarities. On my team of medical professionals, I have a Gynecological Oncologist at the helm at my nearest NCI center. This expert is the Chair of the Breast Center and coordinates/orchestrates care from my breast surgeon/plastic surgeon/local OBGYN/local PCP/and Genetic Counselor. I am in the process of considering prophylactic surgery for my "female parts" and my GYN Oncologist is the guy advising me on both surgery and monitoring protocol. I see him every 6 months.

I really recommend FORCE as a resource. There are folks there like you, who are bc cancer survivors, and are making decisions on the rest of their plumbing, so to speak.

Good luck!

[Binkandabee]

I don't have a gynecological oncologist, no. I suppose this is what is making this so hard on me is I feel like I'm a bit in the dark. My breast surgeon is the one who ordered the gene test and is basically the one guiding me through this. Well, him and the ob/gyn in the same city (I traveled out of state for my mastectomies and reconstruction).

I have an appointment with my local ob/gyn and will get his advice on this as well as he needs to be on board with the monitoring. I just don't have anything telling me that being so aggressively proactive is the right things to do....it's all a big maybe. Now, if I were to get any indication in the future that I'm at a higher risk, then I will have no problem removing everything. My thinking is that at that point, the side effects of the removal outweigh the risk of getting uterine or ovarian cancer. I'm just not there right now. I may change my mind over the next year or two if my anxiety every six months during the monitoring starts to get to me, but for now, I "think" I'm ok with that.

[Binkandabee]

I had an appointment with my local OB/GYN today after a strange turn of events these past three weeks and it turns out that a hysterectomy is now the recommended course of treatment for me over an ablation and tubal ligation. An ablation will likely stop or reduce my periods, but it won't stop the pain that I've been having these past several weeks. So, hysterectomy it is and I am 100% confident that is the right choice. The question now becomes....take the ovaries or not?!?!?!

I had a long discussion with my Dr. (an hour) and he was confident he could get a hormone replacement regimen in place that I will be happy with. He was not confident that he'd be able to monitor for ovarian cancer successfully. Apparently there are studies that show the monitoring tools available now are not very effective at detecting it (I did not know this earlier).

I've been praying for something that shows me I'm making (or not making) the right decision. I'd decided to do the tubal ligation and ablation....and then lo and behold, I have a heavy, painful, never ending period and I read an article about Pierce Brosnan's daughter dying at 41 from ovarian cancer when (presumably) she was being monitored. I'm 99% sure I'm having the ovaries removed at this point. With these new facts, would any of you care to weigh in now? I've got a bit of time to decide, but I need to get to a place of peace with this. It's driving me crazy. This would be MUCH easier if I had anything in my history or genetics that was conclusive. Problem is every single bit of it is a big maybe.

ETA: Something that is weighing on my mind is insurance. Right now, I have phenomenal insurance and with my history everything would be covered. I'm nervous about what the future of healthcare holds and am a bit afraid that if I decide to hold off for 10 years or so until menopause, that a psuedo-elective surgery (ovary removal at this point) won't be an option at all. And then there's the possibility that I may not even have insurance in 10 years. It seems a bit unreasonable, but it's certainly crossed my mind.

[Rainbows&Roses]

I had an appointment with my local OB/GYN today after a strange turn of events these past three weeks and it turns out that a hysterectomy is now the recommended course of treatment for me over an ablation and tubal ligation. An ablation will likely stop or reduce my periods, but it won't stop the pain that I've been having these past several weeks. So, hysterectomy it is and I am 100% confident that is the right choice. The question now becomes....take the ovaries or not?!?!?!

I had a long discussion with my Dr. (an hour) and he was confident he could get a hormone replacement regimen in place that I will be happy with. He was not confident that he'd be able to monitor for ovarian cancer successfully. Apparently there are studies that show the monitoring tools available now are not very effective at detecting it (I did not know this earlier).

I've been praying for something that shows me I'm making (or not making) the right decision. I'd decided to do the tubal ligation and ablation....and then lo and behold, I have a heavy, painful, never ending period and I read an article about Pierce Brosnan's daughter dying at 41 from ovarian cancer when (presumably) she was being monitored. I'm 99% sure I'm having the ovaries removed at this point. With these new facts, would any of you care to weigh in now? I've got a bit of time to decide, but I need to get to a place of peace with this. It's driving me crazy. This would be MUCH easier if I had anything in my history or genetics that was conclusive. Problem is every single bit of it is a big maybe.

ETA: Something that is weighing on my mind is insurance. Right now, I have phenomenal insurance and with my history everything would be covered. I'm nervous about what the future of healthcare holds and am a bit afraid that if I decide to hold off for 10 years or so until menopause, that a psuedo-elective surgery (ovary removal at this point) won't be an option at all. And then there's the possibility that I may not even have insurance in 10 years. It seems a bit unreasonable, but it's certainly crossed my mind.

The monitoring tools for ovarian cancer are not very good. The blood test usually doesn't indicate cancer until it is advanced and ultrasound is hit or miss for detecting at an early stage. I would not leave your ovaries if you are taking other organs.

If you follow the kids boutique clothing world, the owner of Matilda Jane was just diagnosed in her 30s with her main symptom being bloating. She is stage IV from the sounds of it. It just seems like it is becoming way too common and every time I think I am being an alarmist about taking them out, I hear about someone else being diagnosed. I am actually in the process of getting a genetics consult and trying to get them to do the Breastnext test for me since my sister and I am came up BRCA negative. That tests for a bunch of genes and may give me further reason to take my ovaries. I appreciate PP mentioning the gyn onco as I read that somewhere else so I guess I need to try and get into one if they will see me. I would prefer to keep my uterus for structural issues and I know someone in almost my exact situation who did just have her ovaries out without needing progesterone potentially because she is on tamoxifen? I need to find out from her exactly why she is able to do that. I know if you don't have periods on tamoxifen due to the drug or being induced into chemopause, they do an ultrasound to measure your uterine lining annually.

Anyway, good luck with your decision. I really hope by the time my dds are older we have either figured out a cure or some better way of monitoring for ovarian cancer so these kind of decisions don't have to be theirs.

[wellyes]

I am glad you got your "sign" just in time, to help you feel peace with your decision. Good luck.

[kdeunc]

After the conversation with your doctor if I were in your shoes I would have the ovaries removed. Personally I would be worried all the time if I did not. Best of luck with your surgery and your decision making!

[arivecchi]

After the conversation with your doctor if I were in your shoes I would have the ovaries removed. Personally I would be worried all the time if I did not. Best of luck with your surgery and your decision making!
I agree. So glad the decision is easier for you now.

[mommylamb]

Without having the benefit of any real knowledge in this area, but based on what you've said in this thread, if it were me, I'd have the ovaries out. If I had a daughter and it were her, I would want her to have the ovaries out.

[Philly Mom]

Without having the benefit of any real knowledge in this area, but based on what you've said in this thread, if it were me, I'd have the ovaries out. If I had a daughter and it were her, I would want her to have the ovaries out.

I agree 1000%. If you were my daughter or my mother, I would encourage you to take the ovaries out. I also agree with kdeunc that I would worry all the time if I did not.

[Binkandabee]

Without having the benefit of any real knowledge in this area, but based on what you've said in this thread, if it were me, I'd have the ovaries out. If I had a daughter and it were her, I would want her to have the ovaries out.

And this is exactly what my mom has said...do it and never look back. Even the possibility of an increased risk is too much for her. She wants my risk at 0, no matter what the cost.

I've thought this over and I'd tell my daughters the same exact thing.

I've also thought over about what I'd tell DH if the situation were reversed...and it was him making the same sort of decision and I'd absolutely tell him, do whatever you can to reduce your risk of a very deadly and hard to detect cancer.

So, I'm not sure why other than my fear of the side effects that makes it so difficult for me to do what I'd tell others to do.

[twowhat?]

Yes, with the new info I think you have made the right decision for you. Ovarian cancer is no joke and so difficult to detect early. HRT has come a long way so I am sure your docs will find a plan that works well for you!! Best of luck!!!

[Still-in-Shock]

While it's sad that you will have to undergo this kind of surgery, it must be a relief to know what path to take. It's horrible to be in limbo and to not have a plan. I'm glad you now have enough info to move on.

[BabyBearsMom]

With the additional information you provided, I would definitely get rid of the ovaries. Better safe than sorry.

[Indianamom2]

I've been reading this thread and didn't know how to respond in your case, mainly because I may very well be in your shoes someday and I'm not totally sure what I would do. However, I think I lean toward removing the ovaries because monitoring isn't very effective and ovarian cancer terrifies me. The symptoms are so very vague and it is so often not caught in time. Given your history and the timing of all this, I think you have made a wise choice with the hysterectomy and if it were me....I'd probably lose the ovaries too.

I also think your point about health insurance is an extremely valid one. Best wishes that everything goes well.

[JustMe]

As far as I can tell I would elect to have my ovaries removed if I were in your position. I just would not want to take the risk of ovarian cancer.

[ecofem]

OP, see my private message. I want to put it out there that just because you have surgery, risk will never be a "0"... I hate to be the Eeyore of the group, but while the risk goes SIGNIFICANTLY down, it will not be zero.

[essnce629]

Yes, given the new info and hearing your doctor's response, I would go for the ovary removal. It will be a weight off your shoulders after it is all done. I hope the surgery goes well and that the doctor can come up with the right hormone replacement regimen for you.

[Rainbows&Roses]

OP, see my private message. I want to put it out there that just because you have surgery, risk will never be a "0"... I hate to be the Eeyore of the group, but while the risk goes SIGNIFICANTLY down, it will not be zero.

yeah, I was surprised to learn this too a few weeks ago - I don't even know how they can monitor for ovarian cancer somewhere else in your abdomen.

[Binkandabee]

My Dr. mentioned a very rare cancer that looks like ovarian cancer, acts like ovarian cancer and is treated like ovarian cancer...but isn't. Is this what you are referring to?

ETA: read and replied to your PM :)

[Binkandabee]

Final Update....I'm having the ovaries removed. I have the opportunity to reduce my risk for a deadly disease that can't reliably be monitored, I'm a VERY young breast cancer survivor, I have an "oddity" on my BRCA gene, I know nothing about my ovarian cancer risk based on family history alone, and I'm fairly young to need a hysterectomy. Something is just not right with my body it seems. When I write it all out like that, the choice seems clear to me. It's just not worth taking the risk, small as it may be, when my life could be at stake.

Thank you all for contributing to this thread. You've given me lots to think about and I appreciate it.

[scrooks]

I am glad to hear you have come to a decision. Good luck with your procedure!!!!

[megs4413]

I'm sorry I'm so late to this. FWIW, I think you clearly are making the right decision. Prayers for a successful surgery and a long, healthy, cancer-free life. HUGS!

[blisstwins]

Making a hard decision takes so much energy and strength. You have really worked at this one and I wish you peace and a quick recovery. My father died of a cancer largely because he declined a recommended part of treatment when he first got it because he feared the side effects. He rolled the dice and lost. My opinion does not matter, but I am firmly in the camp of reduce risks if you can.

[Binkandabee]

Thank you Blisstwins!

I'm sorry to hear about your father :( My Dad died of lung cancer going on 7 years ago now. It's so tough.

The fear of side effects is a HUGE concern. It's incredibly hard to make a decision like this when everything "seems" fine and being proactive runs the risk of unpleasant side effects that you don't currently have. My Dr. told me to not borrow trouble, so that's what I'm trying to do. Make the best decision with the information I have in front of me, and then deal with the side effects when and if they come. It's really a roll of the dice either way which makes it all that much harder.

[ZeeBaby]

Wishing you a successful surgery and a speedy recovery. It is a very tough decision, but I just ha a friend die of colon cancer. She left behind a 9 year old and a 2 year old. It is never easy.