Pre-op decisions: we'll just take out those ovaries so you won't have to worry about cancer

If you are planning your hysterectomy, or even just investigating what it would mean for you, and your doctor offers you this "recommendation," you may want to ask him to step back and explain himself in a lot more detail.

It used to be the practice that when women were facing a hyst, a surgeon would suggest that because her ovaries "aren't needed" any more, she should have them removed now so as to remove the risk of later getting ovarian cancer. In many cases, this would include the suggestion that "most" women who retain ovaries only end up needing another surgery later to remove them anyway.

Today we know that this kind of a sales pitch is not only medically inaccurate but is in fact a strategy that holds greater odds of shortening a woman's life than the alternative. And, slowly, doctors who keep up with the news in this field are revising their recommendations to a more accurate representation of the various risks.

Much of this turnaround can be credited to this study, published in the May, 2009 issue of the journal Obstetrics & Gynecology: "Ovarian Conservation at the Time of Hysterectomy and Long-Term Health Outcomes in the Nurses’ Health Study." For something that may be a little less intimidating to read, you might try this article at webmd: "Hysterectomy: Spare Ovaries, Boost Health?." Yet another good resource is the anonymous but probably related to the study website OvaryResearch, which focuses on the study and discussion it's stimulated as well as an earlier version of it that appeared in 2005.

Okay, enough with the citations: what's this about?

The study, which involved a very large pool of women (that's good, because it means the results are more likely to really reflect us all), found that rather than lowering deaths from cancer, prophylactic oophorectomy (that's the fancy way of saying taking out ovaries for the sake of prevention) in fact had a higher risk of death from all causes but mostly heart disease and lung cancer. That's right: removing our healthy ovaries at any age does not lengthen our lives or improve our health.

Further, although breast and ovarian cancer rates were lower in women who had their ovaries removed, the risk of death from all types of cancer was higher in these women. So, yes, the very thing we feared and chose this option in hopes of preventing is actually more likely to happen to us than if we'd left well enough alone.

And the rates of death are highest for women who never supplemented their hormones after the surgery. All those women who valiently toughed out menopausal symptoms because they thought it was the right and "natural" thing to do were in fact working with their doctors to shorten their own lives.

Tragic, right? And we're talking a big tragedy here: about 300,000 women a year choose to have this surgery under the impression that it will help them live longer, healthier lives. According to the main study author, that's "50% of women who have a hysterectomy between ages 40-44...and 78% of women between ages 45-64," even though it's well demonstrated that post-menopausal ovaries continue to contribute to our hormonal support, a support that's lost when we take those ovaries out.

But wait! What about women at real risk for cancer?

Yes, of course there are women for whom the risks boil down to high expectation of death by breast or ovarian cancer vs later death by these risks of lost hormones. That's a special situation and no one is suggesting that preventative removal of ovaries might not be the right choice for them.

But it needs to be an informed choice. That means not just making the assumption that because there's "a lot of cancer" in one's family that we are, personally, at risk for these specific cancers. It requires genetic testing and evaluation by an oncological specialist, not an assurance of a gyn surgeon who heard the word "cancer" and got spooked into a slash-and-burn mentality.

Can't I just take something to make up for that risk?

For many of us, the idea of cancer is so terrifying that it shorts out our brains. Especially if we're younger women and few of our peers have died of things we attribute to aging, we may not feel that the risk of heart attack or stroke is all that vivid or personal.

One of the objections to the recommendations of this study, that more women keep healthy ovaries, is that this risk can be treated medically with statins, drugs that lower cholesterol and lipids that are believed to be a major cause of heart disease, and bisphosphonates, drugs that preserve bone density. As the study author replies, however, these drugs have notorious dropout rates, just as HRTs do. Taking out a healthy body part and replacing it with drugs that must be taken for the rest of our lives and may have significant side effects of their own: if we look at it that way, how much sense does that make?

And then there are the women who want to do it "all naturally." What do they do? Exercise and healthy eating are important lifestyle strategies for minimizing cardiovascular and osteoporosis risks, but alone they probably aren't enough for most women, not to mention that they too are something that sounds better in concept than they are actually adhered to for every remaining day of our lives. Menopausal nutraceuticals, the raw plant estrogenic compounds that are sold to reduce hot flashes in natural menopause, are relatively ineffective in coping with the level of symptoms seen with the larger drop in hormone levels due to ovarian removal. And they entirely fail to address many of the more serious effects of hormone deficiency...such as the ones that lead to the risks cited in the study. In fact, this is not a natural situation and there is no natural solution that makes up for it.

But my ovaries are diseased: what should I do?

No one is suggesting that women should not treat existing ovarian disease with surgery. But this study does suggest that we should balance our treatment options against the risks, and those risks are more sizable than our previous understanding led us to believe.

Some ovarian disorders don't require removing the whole ovary to treat, and these are poorly paid back by the increased risks.

But some disorders do require removal for definitive treatment. Sometimes, other diseases are best treated by removing our ovaries. In these cases, however, we still need to understand the costs of that treatment and we need to understand how to mitigate those costs, whether that's drugs or HRT or simply accepting that we have chosen that direction for our lives rather than the one that would have resulted from our ovarian disease.

We need to know that not having ovaries means more than not having ovarian disease.

You have to make up your own mind

This is a complex issue. Many things that can go wrong with our ovaries still don't require that we give up our ovaries. Nothing going wrong with our ovaries really doesn't seem to require their loss. The things at the other side of that equation, heart and lung disease chief among them, kill many, many more women every year.

Just as we don't necessarily believe the car salesman that the extras he's recommending will do anything more than provide him with higher profits, so we shouldn't necessarily believe the person we'll be paying to do our surgery that the extras he's recommending are more valuable to us than him. This is where second opinions are so important, getting an opinion from a doctor who doesn't profit from that advice. And where we're worried about cancer risks, we should talk with an oncologist to make sure we're evaluating our own risk accurately and not just spooked by the word itself.

This study did nothing to simplify our decision with respect to a hyst except for one thing: we simply shouldn't accept "as long as you're having a hyst" as a good reason to give up our ovaries. Because when you hear that phrase, you now know enough to hear the unspoken rest of it: "as long as you're having a hyst, why not let me give you a higher chance of an early death by heart disease or cancer?" And we simply don't need that.

[Note: This essay was revised in June 2009 to include the results of the May 2009 study.]

Will I be in menopause?

Women making plans for a hysterectomy often ask whether having a hyst will mean that they will go through menopause and what that will mean for them if they do. I can tell you right away that if you have your ovaries removed, you will, irrespective of your age, be in menopause when you wake up from anesthesia. If you retain your ovaries, you stand a good chance of postponing menopause for some undefined time, but as we've previously looked at here, there's no guarantee just how long that time will be.

This might be a good place to define just what menopause really is. Menopause is nothing more than your levels of ovarian hormones dropping below that level that supports fertility. When menopause happens naturally (that is, without surgical intervention), our ovaries don't just throw a switch and never produce another hormone again. Instead, a long slow decline begins a decade or more before actual menopause and continues for many years, if not decades after that. Menopause is simply one point on that long slope of hormone output, even if it happens to be one we can clearly see because we stop having periods. Because a woman in natural menopause continues to produce lower levels of hormones that continue to support her remaining, non-fertile hormone needs, she may not have very many or very disruptive symptoms.

But in surgical menopause, when our ovaries are removed, we go from ovarian function (either fertile or naturally menopaused, depending where we are preoperatively) to no ovarian output at all. That doesn't mean we have no hormones at all, however. In menopause, our belly fat contains special cells that can produce a weak estrogen called estrone. Our adrenal glands can also make estrogen from other hormone precursors, although the amount we can produce that way is somewhat dependent upon what other competing tasks the adrenal glands are facing at any particular moment. Whether or not that is enough remaining capacity to meet our non-fertile hormone needs or not, it is definitely enough of a drop that we should be considered menopausal.

Does menopause mean I'm just going to become old and wrinkled and sexless overnight?

No. That depends upon your genetic makeup (how women in your family age at menopause might be a helpful clue for what you can expect) and how well your hormone needs are met in menopause. No matter how you get there, menopause is a major life change—the biggest one we experience after puberty. This signals a number of things to your body and will affect a variety of metabolic systems. You most likely will lose collagen and find that your skin gradually becomes dryer, more delicate and more prone to showing wrinkles, although how rapidly this develops may be somewhat mitigated by genetics and meeting hormone needs. It's typical that our body shape changes as we take over estrogen production with belly fat: we may thicken in the middle and find that metabolic down-setting causes us to gain weight that it is difficult to lose without dietary modification and exercise. And there are other changes that may slowly develop. While we're not plunged into elderly bodies overnight, the fertile part of our lives is over and this will signal changes.

Do I really have to take HRT for menopause? If it only lasts a few months, can't I just put up with the hot flashes and wait it out? I really hate to take drugs if I don't have to.

First of all, let's dispose of that "only a few months" myth. Somehow, doctors have convinced themselves that it only takes a few months to adjust to menopausal hormone levels and thus recommendations for the use of hrts are for just long enough to make this transition. But this is a gross oversimplification for many women, and especially so for those without ovaries. In fact, there are two aspects of menopause that determine how it affects us and how long those effects last.

In terms of overall experience of menopause, the suddenness of the transition definitely affects the number and severity of symptoms we experience. Our bodies don't really approve of hormonal fluctuations, and the sharper the fluctuation, the more dramatically our bodies will express their disapproval with symptoms. An especially rapid change prevents us from making the many small, slow accommodations to life with low estrogen levels and estrogen provided by non-ovarian means. Generally speaking, a surgical menopause is a much greater challenge to the stability our bodies want and will cause more symptoms from the transition.

The other aspect of symptoms has to do with how well our remaining hormone needs are being met. Remaining needs? Yes, our ovarian hormones do many things besides prepare our uterus to receive a fertilized egg. In fact, they are used throughout our bodies in nearly every system. I can't go into all of these details here, but you can read much more about hormones and what they do at the Survivor's Guide to Surgical Menopause. I would encourage any woman facing surgical menopause to read through this material, as this is an important topic for our ongoing health and one we typically know very little about.

The thing about hormone needs is that while they may decrease with age, they do not disappear altogether. So if you are failing to meet your hormone needs, then you can expect symptoms to persist. You don't "get over" the need for basic bodily processes, and if you never provide the support your body needs to carry them out, you'll continue to experience the symptoms of those systems malfunctioning.

But it's also very important not to confuse HRT with drugs. It's easy to do, since they both require a doctor's prescription to obtain and they both are manufactured by pharmaceutical companies. But a drug does something to interfere with a normal body process, with the intent thereby of "fixing" something that is being a problem for us. In the case of hormones, however, we're not interfering with a normal process; we're providing the raw materials to support normal function in the face of a surgically-induced shortage. Taking supplemental ovarian hormones is more akin to someone who is hypothyroid taking thyroid hormone supplements or someone who is diabetic taking insulin (another hormone). HRTs are just different forms of either our exact hormones or a near-match chemical that has similar actions in the body.

Whether or not you need to take hormones (and I include in this category prescription, non-prescription and food sources: if it can act to meet hormone needs in the body, it is an HRT) is pretty much up to you and what you define as the level of health and comfort you wish to experience during menopause. If taking hormones is more distasteful to you than hot flashes and other symptoms, there's really no reason you have to take them. There can be some pretty serious risks to health on either side of the take-or-not HRT question, so you should research hormone actions, consider them in the light of your own personal health risk profile, and decide for yourself how you want to deal with hormone needs. There are drugs that can alleviate some of the symptoms of hormone deficit and there are other health practices that can help limit some of the risks. It's all up to you how you choose to deal with these needs.

And of course we've all heard of the happy, healthy elder who never took hormones and was just fine. I'm really delighted for her, but I have to point out that this cannot be achieved by force of will. We have little control over how well our body is genetically programmed to cope with supplying hormone needs. If yours isn't up to the task, you're not a failure and I would hope you don't punish yourself with guilt. Hormone needs, I repeat, represent basic physical processes, not optional comfort measures. We are not wimps when we choose health and wellbeing in our menopausal years.

I've heard that I should get my hormone levels checked before surgery, so that I can just take enough HRT afterwards to get back to where I know I was feeling good.

Sure, you can spend a few hundred dollars to be tested. But unfortunately, premenopausal hormone levels fluctuate constantly, perimenopausal hormone levels fluctuate wildly, and even postmenopausal hormone levels are only a momentary snapshot. There's no way to know to what extent any hormone level test corresponds to how you feel because of that moment-to-moment variability. Furthermore, if you were fertile, your needs once you are no longer supporting fertility will not be the same. With no uterine cycling to support, that level of hormones will be a gross excess postop.

The other flaw with that premise is that you can look at a test and know how much to put back into the system in HRT. Alas, but it's not that simple. There are so many intersecting influences here that there is just no feasible correlation between levels and supplementation needs. I'm not going into the details here since the Survivor's Guide does it much more thoroughly. What I want to leave you with is the simple statement that it just doesn't work that way. If you want more about the why of it, you'll need to follow the discussions over there.

If it's being menopausal that makes me look old and ugly, can't I just take as many hormones as I used to have so that I stay young looking?

Nope, not a good idea. One of the things we learn in menopause with HRT is that while enough is wonderful, more than enough is hellish. Hormonal excess raises our risks of negative effects and causes some quite unpleasant, if not dangerous, symptoms. And regardless of the risks, HRT just can't turn back time. Your body recognizes ovarian loss or natural menopause as a life transition and behaves accordingly. While HRTs have come a long way since they were first introduced, they remain a relatively crude tool. You can't entirely fool your body with them and they won't reset the clock. Menopause awaits all women; the only part we get to pick is how we respond to the needs it creates.

Postop: Should I call my doctor?

I see posting after posting in the online hyst forums describing all sorts of situations and asking this question. And the only possible answer is, invariably, yes.

Yes, if anything at all happens that worries you or makes you wonder whether or how your postop instructions apply, you should call your doctor.

Yes, you should call your doctor if it happens at 10 am on a weekday and yes, you should call your doctor if it happens at 1 am on Sunday. Every surgeon has a mechanism for taking calls and a relief on-call doctor who will be available if he is off. You may have to leave a message with an answering service and wait for a callback, but you can and should take your questions to a doctor. No one on a forum, no matter how well-educated or well-intentioned, has the information at hand to answer your questions safely and applicably. In fact, if your doctor or his on-call is in doubt because of the limitations of discussing things on the phone, he may ask you to come to the office or be seen in the Emergency Room just so that you can be evaluated more fully. Doctors understand the limitations of phone consultations; women on forums, however well-motivated they may be, tend not to.

"But I hate to disturb my doctor with what might be a silly question..." is an all-too-common response. Nonsense. You are paying the doctor for a service, and part of that service is postoperative supervision. Whether you have developed a complication requiring further treatment or whether your doctor failed to adequately instruct you on what to expect, the doctor is a contractor being paid for a specific service and you are entirely entitled to that full service for those big bucks.

There are things you can do to help make your call as effective as possible. First of all, before you even pick up the phone, jot down some notes. Write out as explicitly as possible what your worries or questions are. Include such background information as when you had your surgery, what surgery it was, what medications and hrt you are on (include when you last took them), what your temperature is or other pertinent information about your physical condition. Your doctor may take your call from a location where he doesn't have your chart or his notes available, and you don't want to rely upon his (crowded) memory for important details.

Doctors respond better to clear, objective information, not subjective responses. Saying in tears that "I feel totally horrible and I'm really worried!!!!" does not convey nearly as much helpful information to the doctor as "I am running a fever of 101, my head has been pounding for 6 hours despite taking [pain medication type and dose and time of last dose], and my incision looks red, puffy and is draining green pus that made a circle 1" in diameter on a dressing in the past 6 hours." The first comment will likely get a soothing response or a suggestion that you need an antidepressant; the second may see you with an office visit and an antibiotic prescription—very different results indeed.

So if you are describing your incision, you need to be prepared to report the following:

• location
• how long this has been going on/when you first noticed it
• color: red, pale, normal skin tone?
• temperature of the area: hot? same as surrounding tissues?
• presence or absence of local swelling, feeling of area: hard? soft? hard lump with distinct edges? dimensions of lump in inches/cm?
• sensation of area: hurts all the time? hurts when touched gently/pushed on? sharp pain or ache? burning pain or stabbing pain?
• smell: no particular odor? medicinal? foul or rotting meat odor?
• drainage description: clear pinkish-yellowish? bright red blood? old clotted blood? pus? green? yellow?
• drainage amount: size of stain on dressing in [whatever] amount of time, how many times you've changed what type of pad or dressing in past [whatever] amount of time?
• your temperature taken just before calling, as well as when you last took it and what it was then

If you think you are having hormonal problems, you need to be prepared to report the following:

• what you are taking for hrt
• when you take it and when you last took it
• what specific symptoms you are having that you attribute to your hormones: hot flashes? mood swings? rash? swelling? headache? nausea?
• for each symptom, further list: when it began, how many times you've had it, how long it lasts (for example: hot flashes started today, I have had 6 lasting 10-30 seconds each and each time more intense/causing heavier sweat or I have burst into tears inappropriately 4 times today and yelled at my kids when they really didn't deserve it twice)

By having this sort of information ready, you're giving your doctor the information he needs to identify and constructively deal with your problem, not your reaction to your problem. And that will make for a whole lot more satisfaction all around. And, hey, if it turns out to be something perfectly normal, then you have the reassurance and your doctor's learned a lesson about preparing you for what to expect that will benefit the next woman he treats. Everyone wins!

Questions for your pre-op appointment

This is a list of basic questions to ask your doctor at pre-op appointments. It may not cover absolutely everything that might be pertinent to your surgery, but it should help you cover the important points. A good way to use this list would be to copy the page, paste it into a word-editing document, add extra lines between the questions, and print it out. Then you can take it to your appointment and write the answers down (or take a mini-recorder and tape them) so you can review them at home, when you have time to think things over. Be sure to jot down any other questions you may think of while reading this, so you remember to ask them, too.

1. What is the full name of my surgery? (Write this down!) What exactly will you remove: uterus? ovary/ies? cervix?
2. Will you be combining this with any other procedures? Appendix removal? Bladder repair? Rectocele? Tummy tuck?
3. How will you remove the organs and where will the incision be? Abdominal (horizontal "bikini"? vertical?)? vaginal? using a laparoscope?
4. Which things you remove will be going to the lab for pathology tests and when will I get the results? If my surgery is for suspected cancer, how soon will I begin treatments and what will they be?
5. Should I donate blood before my surgery? If so, when? If not, what if I need a transfusion? If I don’t need a transfusion, is there something else I should do afterwards to build my blood back up?
6. Right now I am taking (list all of your vitamins, herbs, special dietary practices as well as prescription medications, birth control pills, hrt; if in doubt, list it!). Should I stop them before surgery? If so, when? And when can I go back to taking them after my surgery?
7. Will I have any special surgical preparation: enema? laxative? douche? Will I be shaved? If so, where and by whom? May I do it myself instead?
8. What if I have my period when I’m supposed to have my surgery?
9. I am planning to have my [whatever] pierced or get a tattoo. If I have it done before, how long must it have to heal before the surgery is scheduled? How soon may I have it done afterwards?
10. May I leave my finger- or toenail-polish and/or artificial nails on when I go to the OR? May I leave my wedding ring on?
11. What kind of anesthesia will I have? What if I prefer a different kind? Will I meet with my anesthetist before surgery?
12. How long will my surgery take? Will you report to my family afterwards, while I am still in the Recovery Room? How long will I be in Recovery before I am taken to my room?
13. How will my pain be managed and what will you be giving me? Will I receive it in the Recovery Room? Do I have to ask before I can have it, or will it be given to me? How often may I repeat it? What if that doesn’t work—will I have another option? How will I get that second option?
14. What if I become nauseated after surgery? May I have something for this? May I have it before I vomit? in the Recovery Room?
15. How long will I be on bed rest? When will I get up? How often should I get up?
16. Will I have a catheter into my bladder? Will I be awake when it is put in? When will it be taken out?
17. When can I take a shower? When will I be able to bathe? Use my hot tub?
18. Will I have vaginal bleeding after my surgery? How much and how long?
19. Will I have on special stockings or pneumatic leggings to prevent clots in my legs after surgery? How long will I have to wear them? Will I be receiving any medication for this purpose? Which one, and how long?
20. Will I be hooked up with/using any other equipment or special things after surgery? Tummy binder? Breathing exercise devices?
21. How long will I have an IV after surgery?
22. What will I be taking for post-op gas and constipation? How long will I need this? If I'm not prescribed something and develop these problems, what do you recommend I take?
23. If I am having my ovaries removed, when will I start taking hormones and which ones will I take? What is this choice based on? How can I expect them to make me feel? What if I don’t like the way I feel on the first prescription or think I am having a bad reaction?
24. If I am not having my ovaries removed, how can I tell if they are or are not working post-op? Will I have hot flashes anyway? If my ovaries don’t work right away, what will I experience? How long will I have to experience menopausal symptoms before I can take something to relieve them?
25. What things have to happen before I will be discharged from the hospital? How long should I expect to be in for?
26. When will I see you after I leave the hospital? What if something happens or I have questions about how I'm doing before then?
27. What pain medication and other medications will I go home with? If I run out of pain medication, how do I get more?
28. What kind of problems should I be watching for at home?
29. Do I need to have someone stay with me at home after I am released from the hospital? for how long? Should I arrange for another caregiver or board out my kids and/or pets?
30. What activity restrictions will I have at home? Stairs? Bathing? Driving? Housework including laundry and vacuuming? Lifting how much when? What about my kids or pets—when can I pick them up?
31. What if I do something and it makes my incision/belly really hurt? Can I hurt myself by doing too much too soon? How will I know?
32. Will I need to wear a tummy binder or light girdle at home for belly support? If so, for how long?
33. I am planning to do something special (go to my son’s wedding 2 weeks after surgery—move to a new state a month postop—return to grad school classes of 3 hours a day at about 3 weeks after surgery—take a tropical vacation 2 months after surgery—start paragliding lessons—whatever) in the first 6 months after surgery: is this going to be okay? Should I reschedule it or my surgery to accommodate this plan?
34. When can I return to my job? (Note: be sure that your doctor knows the exact nature of your work! A work-at-home web designer does not have the same physical demands as a warehouse worker toting hundred-pound sacks of cement mix working a twelve-hour shift.) If I return to work and find it too strenuous, will you authorize an extended leave or a limited return to work?
35. When may I have sexual intercourse (penetration)? May I engage in other forms of sexual activity (including orgasm) before that time? If so, when?
36. When may I resume exercising? I normally do for exercise (walk, run, swim, step aerobics, ride horseback, lift weights, bike)—is there any part of that activity I should avoid at first? When and how can I work on regaining tone in my belly? Will you refer me to physical therapy after surgery so that I can work with them on preventing internal scarring and regaining physical conditioning safely (check to be sure your insurance will cover this, but many will if your doctor orders it)? When can I do Kegels again, and should I?
37. If I have more questions after this appointment, how can I get them answered: email? fax?