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I've booked to have my ovaries and tubes removed in the first week of March.

It's been a long, hard decision: there's nothing wrong with them, but I have a strong family history of breast and ovarian cancer (there is no effective screening for the latter, and you don't know you've got it til you're a handful of years away from death, usually) and uncertainty re genetic basis.

I am meant to be having 6 mthly screening (the ovarian bit of which is pointless, as they're now discovering) and mammog + breast MRI but doc finally said 'enough, you're done with kids, just do it'. Ob/Gyn of same mind. And I've just been waiting for someone to help me make the final decision.

I just didn't expect to feel so SAD. And low. And scared.

I don't know of, or about, what. I am done with having kids. It's not that.

I think I am scared of the surgery - and what if I cark it? And what if it wasn't necessary after all, and still I cark it?

I'm scared of the hormonal roller coaster. I'm only 40. Have low estrogen anyway, but chemical meno is BRUTAL. Will do HRT, but still...frightened it will unhinge me.

Am just SAD. And SCARED. And can't really talk to anybody. It's such an odd and controversial thing. Everyone's got an opinion or a judgement, and iI hadn't expected people to get quite so wound up about it (to me it was logical and rational: they're my ovaries, they're a liability, I'm pretty much finished with them). But people get quite...worked up.

And it's all hard right now, anyway. H quitting his job and lots of uncertainty. On the upside, he can run my business while I am away. But...it's a hard time to be stepping out.

But..I can't leave it any longer, either. I can't sit with making a decision lks this and wait months to get the surgery. It's so hard as it is. I just want it over with and done. I especially want it over with and done before my mother's ovarian or breast cancer comes back. One or the other will, and it will claim her, and it won't be a lot of years. I can't stand it every time she gets sick, the thought that I coudl be a ticking time bomb, too.

If anyone feels like talking about this, I'd be grateful. Not about the wisdom or not of whipping out perfectly good reproductive parts - I've been up and down and round and round on that one for a couple of years now, and the decision is made. But about this sadness and scaredness and soberness that's just nagging at me.

Thanks

((((Susanna))))

I had a total hysterectomy about 4-5 years ago. I had fibroid tumors and they kept coming back. I had had my tubes tied in 1981 so I wasn't using the parts anyway. I had already gone through menopause so I didn't have any qualms about having the surgery.

I don't recall feeling sad. In fact, I was quite happy. I was tired of bleeding and having pain and being incontinent. I wanted to get it over with so I could feel better.

The surgery was pretty "cut-and-dry" with no more than the expected pain. It was a 6-week recovery period.

Yes, there were people, mostly women, who told me that there were ways to deal with fibroids that did not involved surgery. I smiled, thanked them, and went along with my plans. I WANTED the surgery. I did what I felt was best for me at the time under the circumstances. You need to do what you feel is best for you. It's one thing to listen to other people and here other points of view; it's another to feel bullied by others. Basically you need to go with your gut feeling (no pun intended) and weigh all the pros and cons of having the surgery. And also to have a doctor who you trust and can weigh in what he/she has to say.

I don't know what "cark" means. Can you tell me? I did fine with the surgery. I stayed in the hospital 3 days. While I was there I had a private room (all patients do at this hospital), ate food ordered from a menu, and was given a back massage! I came home and spent 6 weeks recuperating. I think all in all, having toe surgery was more difficult than the hysterectomy was!

I wish you the best and hope you can keep the courage of your convictions. You do what you believe is best for Susanna! :thumbsup

Susanna,
I think you are doing the right thing. My H's cousins had the same thing, strong family history of ovarian and breast cancer--their mom died of ovarian CA. So the two daughters had the prophylactic surgery. They also had mastectomies with reconstruction. One already had a lump in her armpit that was cancer and the other one had some beginning cancer starting in her ovaries or breast, I can't remember which. But it saved them to do this.

Also I have a friend who had breast cancer six years ago and she had a total hysterectomy to remove most of the estrogen since that was part of the problem and she went into early menopause in her late 30's and really, besides some night sweating and a little mood problem, she was just fine. No HRT. The little mood problem for her was just a little irritability, but if you didn't know you wouldnt think it was menopause. Everyone is different and I understand your fears, but they can treat it if they have to.

You are doing the smart thing. Maybe just try to remember that and let it pick you up emotionally.

I can't tell you much about menopause - outside of the realm of my experience...
Can you filter down what it might be about the surgery that scares you so much? It can be a pretty broad topic, and sometimes it helps me to address the individual fears. At least it makes them seem a little smaller, not so overwhelming.

Whenever I've had surgery, I've been in two minds about it. I don't get surgery I don't need or want (one, the other or both). They've taken out several breast tumors, repaired one knee and tied my tubes. Things that I wanted to happen. So in some ways, I can almost feel excited...even though I learn with every surgery how much I hate recuperation.

Yet I also can be scared. My father's side of the family does not handle anesthesia well. It seems to be a cumulative thing - the more surgeries, the harder it is to bring them out of it until whatever the last surgery is and they just DON'T come all the way out. After my grandfather's last surgery, he just didn't remember anyone anymore. Kind of like Alzheimer's, except pretty much overnight. My father had surgery for a badly broken leg a couple of years ago, and he's lost a lot of coherence and comprehension. I've already had four surgeries and (apparently) it's getting harder for me to come to afterwards.

and then there's all the other great stuff - what if the doctor makes a mistake, what if they don't get it all, what if I have trouble healing, what if it hurts, what if, what if...

If I add all those what if's together, I can end up with a really big cloud of doom. Better sometimes if I look at some of those what if's by themselves. FUnny, each one doesn't seem quite as scary all by itself...

I wish they would have taken my "gear" out when they tied my tubes...For anyone who disagrees with your decision, there's someone else who agrees completely. Besides - it's YOUR body. they can go suck eggs...

Susanna, best to you. my T died of ovarian cancer. if you can prevent it in any way, go for it. it can* still come in the form of the lining of the abdominal cavity, so keep up with the checks, please.

but if it can prevent anything, its worth it. im sorry you have this gene and must go thru this. hang in there. i would be scared shitless also.

Thanks guys. I'm just plain freaking out, I think. Am highly, highly, highly stressed and strung out, and doing my darndest not to spin out entirely.

Had to take sleeping pills last night even to sleep. To be honest, will have a couple of glasses of wine most nights just to take the edge of things. Don't usually drink at all. Careful never to mix the drinking with the pills, though!

Hate taking stuff.

Trying so hard to keep my mind in check and not freak myself out even further.

It's not just the surgery - it's everything. H leaving his job, my own massive work pressures (which is, in a way, good - better than the pressure of NO work). Having to get enough work in to pay him, since he'll work for me for a time (and it's no small salary!) and at the same time trying to work out if now's the right time for this surgery.

On the up side, he won't be totally up to speed with his own work, so he can easily baby sit mine (and gradually build up his own). On the other hand, my body and mind are so stressed, I am not sure it can be a good thing to go INTO this, in this state. Plus I won't find it easy to take the 7-10 days off for recovery if I am freaking out that I am not making money.

On the other hand, I can shuffle some projects to give myself some breathing space. And getting it done means it's DONE - no worrying about it, freaking out about it for the next 3 months.

Plus...it's only a matter of time before my mother's cancer comes back. And when that happens, I will want my ovaries ripped out faster than you can say the words 'pass the scalpel', regardless of whether it works, fits, suits or whatever.

Maybe once I get used to the idea I'll settle down a little?

Just so much going on right now, all at once. It's hard to untangle the strands of it. Just everything feels scary and overwhelming and messy. Hard to get a grip anywhere.

It will be so worth it: could reduce b/cancer risk by 60%, ovarian by 97% (you're right, Jody - it can grow in the peritoneum eve once the ovaries are gone, but only a 3% risk, as opposed to 80% for b/ca and 60-something % for Ovarian, if I'm BRCA, which we can't be sure I am, but because of family hx they say treat it as-if).

Keep trying to think 'what's the lesson in all this?' every time I freak out, and to use my anxiety as a reminder to go back to my breath and practice mindfulness.

I can't solve all the big issues of the entire year, all at once (H building his freelance practice, growing my own company, getting the surgery, the odds of my M getting sick...a massive, huge, scary, exhausting piece of work tomorrow afternoon). I can only fix today. Or actually, this minute and this hour. And being a weekend, this minute/hour are best spent sorting and organising and making sure I have all my ducks in a row for a manic week ahead.

I keep thinking: when will life stop feeling like a crisis? But of course, life always just throws stuff out there. And it's a matter of riding it. I'm the only one who can ratchet this DOWN and take the crisis-feeling OUT of it. It FEELS like a crisis, is all. I think it would help to try to reduce it to some bite sized practicalities.

you know, that is a very insightful thing you said. life throws stuff out there, all we can do is ride it. im gonna remember that. it does feel like that, and things all come in like 10's or something.

i cant really help, or fix it, but i can send ya the best prayers i have (well, thru God, anyways) and hope for the best outcome.

it does help to work on one thing at a time. i tend to do what your doing, which is list everything and then freak. try, if you can, to say ok, the next 10 mins are for worrying on this...and set a timer. then bing! the next 10 are for x. it really does work to lessen the overload.

i mean, no one could handle everything if it all happened on one day. it isnt, its happening over a time period. (been telling myself this very thing).

can you distract yourself with something? a book, a movie, whatever is your distraction choice? sometimes that can help and the time will pass.

((S)) your doing a good job of describing how you feel and all. if nothing else, does it help to let that out? if so, let it out! your right, it is all scary and bad. i think you have the strength to make it thru.

Susanna, I wonder if you're feeling sad because a part of you that's been with you your whole life and has contributed to defining Susanna will be removed.
I suspect your ovaries have served you well through your early adulthood, and now they are a liability to your general well-being. It's not unusual to feel something akin to grief for even parts of ourselves that we don't see, y'know? I'd say it's ok to be sad, and let yourself process the decision you and your doctors have made for your best health.

~ jr

(((Susanna)))

I think that anyone anticipating any type of major surgery is going to be anxious, scared, and even sad. It's normal to be apprehensive over something you are not in control of, and surgery is one of those experiences. Try not to worry about everything; it will all work out. I know that's easy to say, hard to do! Do you have relaxation tapes you can listen to? Breathing, meditation and mindfulness all sound good. Maybe your "sometimes T" can give you some advice?

My mother died of ovarian cancer, but my doctors tell me with 1 relative, I'm not at high risk. I see my gynecologist every 6 months, and get a pelvic ultrasound every year. I dont know if I want to know, but I'll ask anyway. Why did your dr. say those 6 month screenings aren't helpful? Did you get pelvic ultrasounds too? I am in no way comparing your situation to mine, since our histories are different. I'm more worried that if I should get the disease, my daughters would be high-risk.

I wish you an uneventful surgery and an easy recuperation. I will be thinking positive thoughts for you, and prayers if that's okay.

Oh, Wondering...it's so hard. The whole thing, so hard. I'm really sorry about your mum, and it must be so worrying for you.

Have you ever looked into the genetic testing side of things? Very often you end up no further ahead with an 'inconclusive' (there's no such thing as a negative) but some people get ++s that help them to make decisions.

One thing I would say for sure is take care who you talk to. There are a lot of medical people who will have a view on this with very, very little knowledge or understanding of either the issue or the more specific vagaries of it (eg the genetic side), most of whom seem to be friends of mine, eg the pathologist & best friend's husband at dinner last night who vehemently opposes what I am doing.

Even my own family doc had not a clue. But he must have learned something over the past year, because he suddenly and very radically changed his mind re genetic screening and the surgery thing. I had actually stopped talking to him about it and would only talk with my gynae, the genetics folk and a gynae-onc who I got a second opinion from. It's a really contentious area - more contentious than I would ever have thought.

I don't want to freak you out - and you're right, with just one relative, you probably wouldn't be considered 'high risk' - but there is NO and I mean NO effective screen for oca. Which is why I'm doing what I'm doing.

It doesn't show on scans, and by the time the blood test (ca125) is positive, it's too late to do anything about it - it doesn't show til you're pretty far gone.

There was a study last year that showed that screening is pretty much useless. I am trying to find the URL, but the site is really slow (http://www.facingourrisk.org - I think under the 'studies and research' section the message boards) Despite this, docs still recommend it. Maybe because the whole disease is so futile to try and prevent or detect.

I appreciate the thoughts and prayers, thank you.

Jody - I need to come back here with more time to talk about the 'riding the waves' approach, because it suddenly occured to me that part of what was really stressing me out was the sense that this was all out of my hands, out of my control - that I was somehow a victim of it all. In reality, I am not. This is a choice I am making. I am very 'in control' of this decision, and am making good, sounds decisions for myself in a proactive way, rather than waiting to potentially have choices taken away. Ditto for all the other changes that are freaking me out: I've been instrumental in them, and the decision to make them has been made based on a lot of thinking and working it through. I know I can't control outcomes, but I AM in charge of how I respond to this stuff.

So being SOMEWHAT in control - or feeling that way - does alleviate quite a bit of stress for me. It's a balance, though, to surrendering to the things that I have absolutely no control over.

Thanks, jr. I don't feel particularly attached to my ovaries - I know some women do. I think it'd be worse if it was a mastectomy (and people in my position do that, too). I think the sadness is more about how damned SOBERING this whole area is. And the prospect of having to think about it at all.

i was discussing something else with another member here, and realized self empowerment is about the answer to most anything. being in control. and the times we cant be, how to handle that. sorta like the serenity prayer that i read, things we can change, things we cant stuff. it is about self empowerment. learn to handle what we can and let go of what we cant.

and yes, getting overwhelmed ends up for me, feeling like a victim or swept along in some tide i cant stop. it helps me to stop, think, see what i can control and where i have that. and it helps enormously to ponder that.

sometimes we are helpless over certain things, like when my grandkid is having surgery this week. that is where my faith comes in. kinda balance we need of both, ya know?

one reason about screening tests, is you dont know who is reading it. did their phone ring at the time they looked? did they read it good? half ass? etc. always a problem with tests and one reason drs will repeat a test if it comes back odd.

you know, Susanna, its your body. what you choose to do to feel better about this is ok. only you have this right to this choice or no choice. only you. that should be respected.

it is very sobering. far more than throwing dice in vegas. its a odds thing, a karma thing, a what if or what if not thing. and you want to improve your odds. by doing this you have to face you may get a disease. very , very sobering. hugs***

my T knew her odds were not good. her sisters had it. her aunt. her mom. yet she let it go, and it was too late. i feel for her daughter, who will now have to decide what to do also. but its a life your gambling with. very serious.

if you have the surgery, and wondering does not, its all ok for you both. its your bodies, your lives, your choices. i support each of you in what you decide. its your right.

Thanks, Jody.

I was thinking today, it's a bit like that whole learned helplessness thing. I am prone to that from time to time. It drives my h nuts - there are times I just lie down and take stuff.

Yep, it's such an individual choice. And the hard part is, there just is no right answer. It's all just a big gamble.

I'm so sorry about your T. It's awful. And sounds like she had one heck of a history. My M hasn't even told anyone in the family that there might be a genetic link. She's sorta in denial about it. I feel really bad. But I know she would be so damned angry if I told people. And the letter from the genetics people is addressed to HER and HER GP, so I sort of feel like I can't really pass it on further, even though I have a copy...

Wondering, the link to the story re the research is here: http://uk.reuters.com/article/healthNew ... 8820071226. Not that you really want to know!

that is why im so big on medical history with adoptions. we have no idea what might be in my daughters genes, because her father was adopted. we know nothing but his mom died of stomach cancer, not uncommon in japan. we assume his father was white. not much to go on.

i do wish you well with this. please let me know how it comes out and how your feeling. i think its hard when there is no one right answer. i think it helps you have taken charge of your own body and made a decision about what to do. i admire that!

you know, most of life there is no right answer to most things. we do the best we can at the time and hope for the rest. ((S))

Susanna, I applaud you on taking charge and doing what you feel is best. There is never a "right" or "wrong". We can only do our best. I found that's particularly true with everything to do with my "femaleness" - whether it was breastfeeding, having a hysterctomy, having C-sections. I have to do what I feel is best for ME. Not to cave in to other women's ideas and soapbox theories. I chose to breastfeed, but also chose when to stop. In this instance, it IS all about you!

Honestly, the surgery isn't all that bad. You will have to baby yourself for a few weeks - hey, there's nothing wrong with that! Lay in bed a while, be pampered, get some books, watch TV. And every day you'll feel better and better. For me, I felt lighter after the surgery. No more bleeding, no more heavy feeling inside, no more leaky bladder. I feel more like the "real me" than I had in 40 years!

I'm not saying this in lightness. I know it's serious. But you are taking control, taking care of yourself, weighing the options and with G-d's help will come out a winner!!!! I support you 100%!!!! :thumbsup

Susanna, I hope it's not too late to wish you good luck with your surgery. I'm not sure which day you are having it. I hope it goes well for you and that before long you will be able to post how you are feeling.

Wondering, you must have had a sixth-sense.

I had the surgery this morning. All went swimmingly well, was home within 6 hours and am mostly comfortable (aside from a lot of shoulder pain - they fill you full of gas to lift your belly away from your internal organs and it settles in your shoulder or something. Like having a really bad pulled muscle but NOTHING helps!)

I am much more settled now it is over. Yesterday was so hard. And this morning. And on the weekend I was just so stressed I thought I was going to explode. Got through it with a ton of meditation and mindfulness. In the end decided to use it as an opportunity to practice...and decided that no matter what, no matter how stressed I got or out of control and awful things got, I would do my best NOT to melt down and go ballistic. And I didn't. Every time i got overwhelming urges of 'I can't cope' and 'leave me alone' and 'I can't take another thing' I took a deep breath and reminded myself that I had committed to staying focused on being a decent human being. And it worked! I guess there's probably some DBT name for it

Thank you for remembering, Wondering. And BG and Jody for your earlier posts. It's not an easy thing for people to understand, sometimes. So I don't really talk about it outside of the medical folk who are caring for me & the genetic counsellor etc.

My H and most of the people around me have been wonderful. But my very best friend is avoiding me altogether - her H is a doctor and doesn't agree with what I am doing. I have chosen to view it that she is doing me a kindness by staying away at this time, rather than get stuck feeling hurt and wounded b/c she's not 'supporting' me. Maybe her way of supporting me is not putting a conflicting/judgemental view in my face right now, when I can least deal with it. Who knows. Whatever. I am choosing to find something compassionate in it, until I get evidence to the contrary

Now just going to take every small step at a time. Get through the day with the shoulder. Get through the night & hope I manage to sleep despite it. Get through an antsy few days of restricted activity. Get through a week without work (now THERE'S a challenge). Get through heaven knows how long of whirly gig hormones. Get through two weeks no gym.

Another set of things, I guess, to practice all those good skills life is finally dealing to me!

i am so glad to hear your doing well. ((S))

well, he can disagree all he wants to himself, it isnt his body. lol. maybe she just is waiting till you feel up to having company.

hang in there...tend to yourself a lot. rest up,,,be lazy and let me know if i can help in any way.

whew, glad its over

Susanna, I'm glad your surgery is over! I can't believe you're already typing again! I can't believe it's outpatient, also. Take it easy and enjoy your "forced" rest. Now you can just relax let people help you all they can.

I'm so glad you're doing okay Susanna. Yes, recovery is hard after surgery but each day things hopefully will get better! You're doing great! :thumbsup

Oh I remember that "gas settling in the shoulder thing" - not nice, very uncomfortable. But, it passes pretty quickly. :thumbsup Glad the op went well and you are otherwise feeling ok. Take it easy. Make the most of being pampered and spolied for a bit.

Thanks BG, Amanda and Wondering...

Still at home, going slightly stir crazy but better every day. Will be back at work next week, which will be great.
!

Glad you're feeling better! Every day it does get better. And you get stronger too.