I fail to see how this is so great...re preventative ovarian cancer surgery

[SparklyUnicorn]

http://www.cnn.com/2016/06/27/health/ovarian-cancer-prevention-extends-life/index.html

 

Then factor in recovery time for such surgery.  Factor in side affects from hormone replacement therapy.  Factor in increased risk of other conditions from said surgery.  This in my mind negates the benefit. 

[SparklyUnicorn]

To add, this is a consideration of mostly quantity and not quality.  So you can live an extra few months, but what is your life like?  I'd say with my mother after the treatments there was very few quality days.  It's not good enough in my mind to just be alive.

 

 

[ktgrok]

dumb for people at low risk. But, for those at high risk, like Angeline Jolie, they said it was hugely helpful...reducing her risk 75-95 percent or something, right? That would be worth it. 

[SparklyUnicorn]

dumb for people at low risk. But, for those at high risk, like Angeline Jolie, they said it was hugely helpful...reducing her risk 75-95 percent or something, right? That would be worth it. 

 

I don't know.  I am at high risk.

 

I guess I'm thrown by the prospect of living a few more days after having to go through that 

[bettyandbob]

To add, this is a consideration of mostly quantity and not quality.  So you can live an extra few months, but what is your life like?  I'd say with my mother after the treatments there was very few quality days.  It's not good enough in my mind to just be alive.

 

I read this in the middle of the night in a fit of insomnia. I may not have absorbed it all. The way I read it was the researchers averaged extending life by months, but they believed it could work out much longer. 

 

The research is really early on this. I do think for the preliminary evaluation it looks positive, but they need more long term studies. 

[SparklyUnicorn]

I read this in the middle of the night in a fit of insomnia. I may not have absorbed it all. The way I read it was the researchers averaged extending life by months, but they believed it could work out much longer. 

 

The research is really early on this. I do think for the preliminary evaluation it looks positive, but they need more long term studies. 

 

Yeah I suppose this is SOMETHING.

[bettyandbob]

Yeah I suppose this is SOMETHING.

 

It;s a start for those at high risk. I'm not in that category.

 

The health news I ran across that bothered me today was (and I apologize for not having the link) the calling for induction at 39 weeks rather than waiting until 41 or 42 weeks. I'm not convinced the outcomes improve for babies and the outcomes have to be worse for mothers. 

[sarasue7272]

I don't think removing body parts because they "might" get cancer later is a good option. And the article said they did not take into account mortality from other cancers, and risk of heart disease goes up after the surgery. 289k women die from heart disease in the us every year. It is the leading cause of death for women. 14.5k women die from ovarian cancer.

[Bluegoat]

It;s a start for those at high risk. I'm not in that category.

 

The health news I ran across that bothered me today was (and I apologize for not having the link) the calling for induction at 39 weeks rather than waiting until 41 or 42 weeks. I'm not convinced the outcomes improve for babies and the outcomes have to be worse for mothers. 

 

They seem to me to come from similar ways of thinking though.  Looking at statistical information in isolation, for example.  A lot of assumptions about things they simply don't know.

 

With the 39 weeks thing - are they considering the increase in infants admitted to the NICU because they are early, because of our interventions?  There seems to be an assumption that being a few weeks early is not a problem, but we know it can actually have consequences.  We know that despite what they seem to believe, ultrasounds are not infallible at dating pregnancies.  Do they really think that removing babies at 39 weeks will prevent the issues that can cause problems?

 

A lot seems to stem from an idea that the body doesn't work well, that we know enough to do better, to build a better man, yk?

[trulycrabby]

I am high risk and had the surgery, but I had been having pelvic pain and ascites for two years, so the docs strongly felt there was a medical reason to remove fallopian tubes and ovaries. Hormone therapy has been fine with bioidenticals. Without the extreme discomfort I had been experiencing, I would not have opted for the sugery and would instead have yearly CT's and ultrasounds. I feel 100% better.

 

Not trying to convince anyone to rethink their decision; the folks here are intelligent and very capable of managing their own lives.

 

I also think it is kind of a false sense of security to get prophylactic surgery, because in high risk individuals, the cancer can show up anywhere in the peritoneum, not just the ovaries and tubes. The risk is reduced, not eliminated.

Edited June 28, 2016 by trulycrabby

[Penguin]

I had that surgery ten years ago, and hormone replacement therapy is not an option due to a history of breast cancer. I worry about osteoporosis more than heart disease. Other than the surgery, I have no other special risk factors for heart disease. My numbers are good.

 

No regrets, but I can certainly see both sides of the argument. I am glad I had the option.

[purpleowl]

A friend of mine, who had a family history of early deaths due to ovarian cancer, found out she was BRCA 1+ and had preemptive surgery to remove her ovaries. In doing the surgery they discovered that she already had cancer. Had she waited, the cancer would not have been found in time. That surgery saved her life.

 

I realize that not everyone has the same family history and that it may not be the right choice for some. But it can certainly be right for others.

[SparklyUnicorn]

They seem to me to come from similar ways of thinking though.  Looking at statistical information in isolation, for example.  A lot of assumptions about things they simply don't know.

 

With the 39 weeks thing - are they considering the increase in infants admitted to the NICU because they are early, because of our interventions?  There seems to be an assumption that being a few weeks early is not a problem, but we know it can actually have consequences.  We know that despite what they seem to believe, ultrasounds are not infallible at dating pregnancies.  Do they really think that removing babies at 39 weeks will prevent the issues that can cause problems?

 

A lot seems to stem from an idea that the body doesn't work well, that we know enough to do better, to build a better man, yk?

 

It feels to me like hey let's keep a person alive at all costs because that's the most important thing.  No it isn't.  Not to me.  If I'm ill or miserable or recovering from surgery, this is not nothing.  This isn't awesome because "hey I'm alive".  It's like my mother, after awhile she just didn't want to get treatment anymore.  It was offered, but I don't blame her.  She had been through hell and back and her quality of life wasn't that good anymore. 

[ErinE]

It;s a start for those at high risk. I'm not in that category.

 

The health news I ran across that bothered me today was (and I apologize for not having the link) the calling for induction at 39 weeks rather than waiting until 41 or 42 weeks. I'm not convinced the outcomes improve for babies and the outcomes have to be worse for mothers. 

 

The risk of stillborn is significantly greater past 40 weeks. This is one survey: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3719843/

Edited June 28, 2016 by ErinE

[EKS]

To add, this is a consideration of mostly quantity and not quality.  So you can live an extra few months, but what is your life like?  I'd say with my mother after the treatments there was very few quality days.  It's not good enough in my mind to just be alive.

 

The reality is that most women--the ones who would not have gotten ovarian cancer--will not live a few extra months.  It's the ones who would have gotten ovarian cancer would would live many extra *years*.  Those years are averaged across all of the women in the study.

[SparklyUnicorn]

The reality is that most women--the ones who would not have gotten ovarian cancer--will not live a few extra months.  It's the ones who would have gotten ovarian cancer would would live many extra *years*.  Those years are averaged across all of the women in the study.

 

Yeah that sounds better.  And now I get it.

 

Still not sure I think it's worthwhile for me.  It was offered, but I feel like it was offered without actually considering all the factors.  Like what's the big deal if you just cut your ovaries off.  My last OB was kind of a jerk.

[SparklyUnicorn]

Another thing I do know about is that the types of ovarian cancer vary.  I'm not sure which type my mother had, but with some types it basically makes no difference if you have ovaries or not.  You can still get cancer in that area.

I wonder if I could get that information somehow.  I wouldn't know how to go about doing that.

 

 

[SparklyUnicorn]

Hm...apparently this may be impossible (for me to get those records).

 

 

[J-rap]

It's kind of weird how the article first presents the benefits, but as you read further and it says, "carriers of BRCA mutations who undergo pre-emptive surgery have a 71% to 96% reduction in the risk of subsequent ovarian cancer," then it makes more sense.  Peace of mind alone can count for sooo much.  

[SparklyUnicorn]

It's kind of weird how the article first presents the benefits, but as you read further and it says, "carriers of BRCA mutations who undergo pre-emptive surgery have a 71% to 96% reduction in the risk of subsequent ovarian cancer," then it makes more sense.  Peace of mind alone can count for sooo much.  

 

It does, but I'm confused as to why they didn't lead with that.  Maybe they didn't want to make it sound better than it is?  I don't know.

[SparklyUnicorn]

My husband is being rather dense.  He thinks going to the OB is "checking" for it.  No it is not.  They have no way to check for it!

 

Yeah...but you know they can check for it.  NO they cannot CHECK for it. 

 

Wow...

 

 

[J-rap]

It does, but I'm confused as to why they didn't lead with that.  Maybe they didn't want to make it sound better than it is?  I don't know.

 

I am too!  It seems really odd that they didn't start with that information!

[SparklyUnicorn]

I am too!  It seems really odd that they didn't start with that information!

 

Who knows. I take these articles posted on general new's sites with a grain of salt because who knows what they've exaggerated or not. 

[regentrude]

 

In fact, according to the Society of Gynecologic Oncologists (PDF), three studies demonstrated that carriers of BRCA mutations who undergo pre-emptive surgery have a 71% to 96% reduction in the risk of subsequent ovarian cancer.

 

For somebody with the mutation, that is a very strong argument in favor of preemptive surgery. I would not hesitate to have it done if there were a history of ovarian cancer in my family. 

[regentrude]

I don't know.  I am at high risk.

 

I guess I'm thrown by the prospect of living a few more days after having to go through that 

 

but that's not what it says. The average increased life expectancy is not meaningful to draw conclusions about the increased life expectancy of a high risk woman. The number is obtained by averaging people who would never have gotten ovarian cancer (and who thus won't get any increased life expectancy from the surgery) with  people who likely would get it, and for those high risk woman, this will often make the different between cancer or no cancer.

Edited June 28, 2016 by regentrude

[SparklyUnicorn]

 

 

 

For somebody with the mutation, that is a very strong argument in favor of preemptive surgery. I would not hesitate to have it done if there were a history of ovarian cancer in my family. 

 

Yeah the thing that I do not know is whether or not I have that mutation.

 

I suppose I could get that test and then that would be one more factor if positive.  I still think there is a good chance the risk factor for me is not extremely high based on the fact no other person in my family has ever had breast cancer or ovarian cancer.  No matter how far back you go on either side. 

 

Of course the genetic testing costs thousands of dollars.  *sigh* 

[SparklyUnicorn]

but that's not what it says. The average increased life expectancy is not meaningful to draw conclusions about the increased life expectancy of a high risk woman. the number is obtained by averaging people who would never have gotten ovarian cancer in the first place with  people who likely would get it. 

For the high risk woman, this will often make the different between cancer or no cancer.

 

 

Yes I get that now.  They led with the oh look people lived a month longer and I thought SO WHAT.

 

But yes, now I understand the details better.

 

 

[ErinE]

Yeah the thing that I do not know is whether or not I have that mutation.

 

I suppose I could get that test and then that would be one more factor if positive.  I still think there is a good chance the risk factor for me is not extremely high based on the fact no other person in my family has ever had breast cancer or ovarian cancer.  No matter how far back you go on either side. 

 

Of course the genetic testing costs thousands of dollars.  *sigh* 

 

Have you looked into 23andMe? It's pricey, but not thousands. A family member had it done, and it told him if he was at risk of certain cancers.

[SparklyUnicorn]

Have you looked into 23andMe? It's pricey, but not thousands. A family member had it done, and it told him if he was at risk of certain cancers.

 

Well, anything reputable I've read says these sorts of things aren't any good. 

[SparklyUnicorn]

Have you looked into 23andMe? It's pricey, but not thousands. A family member had it done, and it told him if he was at risk of certain cancers.

 

I don't see anywhere that this tests for those specific things.

 

Looks like something fun to do, but not sure how useful it is.

[Um_2_4]

I had the genetic testing done because my mom died of ovarian cancer, my mat gma of lymphoma, my mat ggma of cervical cancer, my mat gpa of colon cancer, my dad of esphogial cancer, etc. etc. Basically my whole family died of cancer for a couple generations. Thankfully I do not have the mutation. But my insurance offered the test to me when they saw my family history. I didn't even have to ask for it, so maybe find a good primary doc and go over your family history and see if insurance would cover it. As a bonus, my dna is now being "watched" and if they discover any new mutations I'll be notified.

[ktgrok]

I don't know.  I am at high risk.

 

I guess I'm thrown by the prospect of living a few more days after having to go through that 

 

The living a few more days was, from my understanding, for people at low risk of cancer. If they had a 4% risk of cancer the surgery extended life by 41 days. I agree, totally not worth it. 

 

But for those with certain risk factors their risk of cancer is as high as 39%, so the extra longevity would be significantly higher than for someone with a 4% risk. 

[SparklyUnicorn]

I had the genetic testing done because my mom died of ovarian cancer, my mat gma of lymphoma, my mat ggma of cervical cancer, my mat gpa of colon cancer, my dad of esphogial cancer, etc. etc. Basically my whole family died of cancer for a couple generations. Thankfully I do not have the mutation. But my insurance offered the test to me when they saw my family history. I didn't even have to ask for it, so maybe find a good primary doc and go over your family history and see if insurance would cover it. As a bonus, my dna is now being "watched" and if they discover any new mutations I'll be notified.

 

Oh I have no doubt they will cover it, but my portion would be quite high so they might as well not cover it.  KWIM?

 

Although looking at the benefit thing here it is hard to say for sure because they are purposefully vague.

 

 

Edited June 28, 2016 by SparklyUnicorn

[Penguin]

I have not had the genetic testing done either.

 

I had the surgery done because my breast cancer was estrogen positive and I was willing to take off any and every body part that would improve my chances of survival. YMMV :)

 

 

[Liz CA]

Just a word to the side effects. I managed a lot by a healthier diet (I changed everything afterwards in regards to food, quality of food, etc.), supplements, a knowledgeable physician / naturopath and one's attitude. I did a ton of research on my own, sought out experts and other women who had gone before me down this path and took what I wanted to try out, what I could afford and what made sense to me. I listened / watched how I was feeling, was more mindful.

I feel so much better because there were problems that had started to interfere with everyday life and I cannot say I miss my ovaries. I went into surgical menopause at 44, perhaps earlier than I would have naturally but I viewed it as an advantage. I knew it was coming - I knew the exact day and I was able to prepare, mentally and physically.

There are women who have a difficult time (psychologically) giving up their reproductive organ(s) but I considered it rationally and since I am a more analytic person by nature, it did not cause me undue concern. This is obviously a highly personal decision and I did not have a choice in the matter but I can understand women like Jolie who opt for the preemptive strike.

Edited June 28, 2016 by Liz CA

[Liz CA]

Yeah the thing that I do not know is whether or not I have that mutation.

 

I suppose I could get that test and then that would be one more factor if positive.  I still think there is a good chance the risk factor for me is not extremely high based on the fact no other person in my family has ever had breast cancer or ovarian cancer.  No matter how far back you go on either side. 

 

Of course the genetic testing costs thousands of dollars.  *sigh* 

 

It's not thousands but perhaps in the $300-500 range. You seem worried about it and a test may give you some definite answers which you could use to make other decisions. I recall another, similar thread about this topic. If you are concerned because your mother was diagnosed around the age where you are now, it may be worth to look into genetic testing just to have some facts and based on those you can evaluate your options.

 

[SparklyUnicorn]

Just a word to the side effects. I managed a lot by a healthier diet (I changed everything afterwards in regards to food, quality of food, etc.), supplements, a knowledgeable physician / naturopath and one's attitude. I did a ton of research on my own, sought out experts and other women who had gone before me down this path and took what I wanted to try out, what I could afford and what made sense to me. I listened / watched how I was feeling, was more mindful.

I feel so much better because there were problems that had started to interfere with everyday life and I cannot say I miss my ovaries. I went into surgical menopause at 44, perhaps earlier than I would have naturally but I viewed it as an advantage. I knew it was coming - I knew the exact day and I was able to prepare, mentally and physically.

There are women who have a difficult time (psychologically) giving up their reproductive organ(s) but I considered it rationally and since I am a more analytic person by nature, it did not cause me undue concern. This is obviously a highly personal decision and I did not have a choice in the matter but I can understand women like Jolie who opt for the preemptive strike.

 

I don't have issues psychologically with having my wares yanked out, but I am concerned about having to recover from that (among other things).  That really freaks me out. I have had no luck finding a doctor who didn't just brush this off like it's not a big deal.  I had a doc who essentially said oh big deal yank them out.  A doc once told my mother when prescribing hormones so what if she gets breast cancer we can cut your breasts off.  I mean really, I have no patience for that kind of stupid attitude.

 

Even stuff like diet.  What exactly is a healthy diet?  I don't even know what that means to you...or me...or anyone.  Only certain things scream super unhealthy to me.  For years I've eaten lower carb because of a high diabetes risk.  That so far has worked out.  So sure I believe that helped.  I'm not really willing to get more radical than that. 

 

But then I dunno I seem to be very sensitive to any kind of supplements.  It's like I have every negative side effect possible to medications.  Last time I had to take an antibiotic my face and legs swelled up!  Everything I try is like that.  So supplements aren't a super attractive thing to me.

 

I'd love to have a doctor who would actually take the time to explain these various options.  They never do.  It's like do you want me to chop out your organs or not?  That's it. 

 

So that's why I whine to you guys here.  LOL 

[Audrey]

It feels to me like hey let's keep a person alive at all costs because that's the most important thing.  No it isn't.  Not to me.  If I'm ill or miserable or recovering from surgery, this is not nothing.  This isn't awesome because "hey I'm alive".  It's like my mother, after awhile she just didn't want to get treatment anymore.  It was offered, but I don't blame her.  She had been through hell and back and her quality of life wasn't that good anymore. 

 

Yep.  I totally understand, Wendy.  I feel the same way.

[regentrude]

Just a word to the side effects. I managed a lot by a healthier diet (I changed everything afterwards in regards to food, quality of food, etc.), supplements, a knowledgeable physician / naturopath and one's attitude. 

 

Liz, slightly off topic, but would you mind sharing what kind of dietary changes helped you to manage the side effects? I assume those would be valuable for a woman going through regular menopause as well.

Thanks

[SparklyUnicorn]

It's not thousands but perhaps in the $300-500 range. You seem worried about it and a test may give you some definite answers which you could use to make other decisions. I recall another, similar thread about this topic. If you are concerned because your mother was diagnosed around the age where you are now, it may be worth to look into genetic testing just to have some facts and based on those you can evaluate your options.

 

 

Everything points to it being more in the range of $3000. 

 

Of course the price estimator for my insurance company is magically not working at the moment so I can't check there right now. 

 

Considering they charge over $200 around here to run a pap smear I doubt the cost is that low.

 

But yes I would not be willing to have the surgery without at least one more something or other pointing in that direction.

[Liz CA]

Liz, slightly off topic, but would you mind sharing what kind of dietary changes helped you to manage the side effects? I assume those would be valuable for a woman going through regular menopause as well.

Thanks

 

I followed my naturopath's advice to avoid the "Dirty Dozen" which are fruits and vegetables laden with pesticides. Gradually, I shifted to all organic or biodynamic vegetables. I sourced farm-raised eggs from hens that eat grass and worms instead of soy products or grain. I added some vegetables to my repertoire that I had up to that point neglected, i.e lots of beets, turnip, rutabaga - basically I made sure I ate a wider variety. I also paid attention how the meat we were consuming had been raised and processed. I am not a big meat eater (I lean heavy on rice and vegetables and eggs) but my dh is and we sourced some better options.

 

I definitely made use of locally grown products, especially organically grown or with as little pesticides as possible.

I made sure I had a good balance of carbs and protein (had never paid attention to this before) and chose carbs with a low glycemic index.

I also discovered fermented foods - or rather re-discovered it since my grandmother canned and preserved a lot. I never knew how easy it was to fill a couple of mason jars and let the veggies ferment. The good probiotics they contain have a positive long-term effect.

 

I basically learned how to make a lot of things from scratch and minimized processed or ready-to-eat foods. I make sourdough bread (without yeast; it is a fermented food), mayo and mustard and ice cream.

Dh once commented that I would try to make water from scratch if I could... :lol:

For other menopausal issues, naturopath advised Maca, Cod Liver Oil, Vitamin D and an immune booster coupled with bio-identical estrogen (very small dose) and a little more progesterone in cream form. This doctor is in favor of rotating some supplements around so the system gets "new" benefits as she puts it. So intermittently, I have been on lipoic acid, magnesium (very good for me) and chromium. But some of those more specific supps are due to the comprehensive blood panel she has me do annually.

Maybe I am very fortunate but I had fewer symptoms than my friend who went into menopause naturally and struggled with hot flashes a lot.

Edited June 28, 2016 by Liz CA

[Liz CA]

 

So that's why I whine to you guys here.  LOL 

 

I accidentally snipped too much off your quote. I am referring to docs asking you if you want your ovaries yanked or not without much discussion.

That is very frustrating. Can you consult a geneticist or a naturopath?

As far as recovery goes, the actual recovery from surgery was not difficult for me even though I had the "full zipper." Every day, things get a little better - but maybe I heal well. This is an individualized thing. Have you had any surgeries at all that lead you to believe you have issues with recovering?

[SparklyUnicorn]

I accidentally snipped too much off your quote. I am referring to docs asking you if you want your ovaries yanked or not without much discussion.

That is very frustrating. Can you consult a geneticist or a naturopath?

As far as recovery goes, the actual recovery from surgery was not difficult for me even though I had the "full zipper." Every day, things get a little better - but maybe I heal well. This is an individualized thing. Have you had any surgeries at all that lead you to believe you have issues with recovering?

 

Well closest thing I had to surgery was giving birth (and having a tubal).  That was a pretty hellish time, but I had some back problems, broke my tail bone, and got an infection following the surgery.  I'd say it took me a year to feel "normal" again. 

[SparklyUnicorn]

I took cod liver oil some years ago and my hair started falling out.  I don't have 100% proof it was the cod liver oil, but after stopping it the problem went away so I'm inclined to think it was possibly connected.

 

 

[prairiewindmomma]

You could always go the DIY route and do 23 and me testing, and then run the raw data through a companion website. That would be only $200.

 

As far as preventative diet goes, http://foodforbreastcancer.com/articles/breast-cancer-diet-for-brca1-and-brca2-carriers.  Note that there is info for ovarian cancer there.

 

 

[SparklyUnicorn]

You could always go the DIY route and do 23 and me testing, and then run the raw data through a companion website. That would be only $200.

 

As far as preventative diet goes, http://foodforbreastcancer.com/articles/breast-cancer-diet-for-brca1-and-brca2-carriers.  Note that there is info for ovarian cancer there.

 

Well the good news is I eat a lot of those things regularly.  I don't think I need to change my diet.

[Liz CA]

Well closest thing I had to surgery was giving birth (and having a tubal).  That was a pretty hellish time, but I had some back problems, broke my tail bone, and got an infection following the surgery.  I'd say it took me a year to feel "normal" again. 

 

This would scare me too even though you had other contributing factors but the memories of how long it took to get back to normal are still with you. I now understand how this can seem scary to you.

 

 

I took cod liver oil some years ago and my hair started falling out.  I don't have 100% proof it was the cod liver oil, but after stopping it the problem went away so I'm inclined to think it was possibly connected.

 

Wow. Did you take a good quality one like Green Pasture or something over the counter? I wonder if there was something else in it that caused a weird reaction but CLO is not the only thing that is good for you. Fortunately, there are other choices.

[SparklyUnicorn]

This would scare me too even though you had other contributing factors but the memories of how long it took to get back to normal are still with you. I now understand how this can seem scary to you.

 

 

 

Wow. Did you take a good quality one like Green Pasture or something over the counter? I wonder if there was something else in it that caused a weird reaction but CLO is not the only thing that is good for you. Fortunately, there are other choices.

 

I ordered it from Green Pasture. 

[Liz CA]

I ordered it from Green Pasture. 

 

In that case, I'd stay away as well. You may have had a detox reaction but if it was severe enough, there are other ways to go without going bald.  :)

[mom2att]

There's no predicting the future, but sometimes you take what you know and you run with it. My mom had breast cancer in 1990. She had lost a sister to it 10 years earlier. Mom made a full recovery from that episode, but not from the ovarian cancer that was found in 2007. If only we had had the knowledge of her BRCA2 mutation in 1990, she could have had the preemptive surgery and quite possibly still be around today.

 

When my sisters found that they, too carry the gene mutation, they didn't hesitate to get preemptive surgery. They were close to my mom's age at her first diagnosis, and weren't taking any chances.