BRCA2 and ooph
I am 32 and BRCA 2 positive. I had a bilat mx in january of this year to treat a large area of DCIS in my right breast, and I elected to have the left one removed prophylactically. I have two kids, and don't have plans for any more. My doctors are pushing hard for me to have my ovaries removed in the next year or so, and I am balking at the idea. I want to wait 10-15 years until I am a little closer to natural menopause. In the meantime, I would be vigilant about screenings. No one in my family has had ovarian cancer, just breast cancer. Am I crazy to wait?
Comments
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No you are not crazy! I am having my ovaries removed at the end of this month and I am having a hard time about doing so. I'm older than you too and it still bothers me. But, I had ER+ DCIS, grade 3 and can't take tamox so I have to get those ovaries in check. I had thought I was in the clear because of getting through menopause, but found out last week to my surprise, those little ovaries are still working. UGH. I know that I'd kick myself from here to kingdom come if I didn't do anything to get the ER+ stuff handled so it's good bye ovaries. No history of ovarian cancer in my family either although BC runs rampant. If you can take tamoxifin that should handle the ovaries....of course that brings in another whole line of issues.
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Yeah, I've gotten mixed recommendations from different doctors on Tamoxifen. Breast surgeon says take it, high risk clinic doc says no, have the ooph....I don't really want to do any of that. I am a fan of a healthy, whole food diet, lots of exercise, and never, ever missing a screening. I mean, I already had a bilat mx..can't that just be enough for now?
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Wobyon, I like your way of thinking.
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Thank you. I really appreciate you posting replies. It has given me the little boost of confidence I need to face my screening appointment next Monday. I know they are going to put the pressure on me to schedule surgery, and I strongly feel I need to have the strength to say no. Thank you again.
As for you, I'm sorry to hear you are having yours removed. You said you are older than me, but it's a loss at any age. Best wishes to you.
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I am BRCA2 positive and just had a BPM and bilateral salpingo oophorectomy. I work in the health care field and have daily contact with oncologists and surgeons...I chose to have oophorectomy because there are no signs and symptoms of ovarian cancer. Once its there, its very aggressive.
You can have ultrasounds to monitor growth or masses, but since it is such a fast growing cancer why wait! I'd rather have my ovaries out and avoid ovarian cancer than worry about menopause.
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Wobyon, there are studies showing that an ooph at too early an age can lead to other serious health problems; the first of these is heart problems. Some studies showed that women who had an ooph before ages 35-40 died on average 10 years earlier than women who didn't.
You might want to talk to cardiologist about these issues before you make a decision.
All the best.
Leah
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I concede that they need to come out, my dilemma is deciding just when. I want to balance protecting my heart and bones with appropriate risk reduction. I mean, it is a 20% risk - which translates to an 80% chance nothing will happen, and ovarian cancer often doesn't strike BRCA2 women until a later age. Menopause and it's symptoms, while bothersome, don't really scare me...it's heart problems and osteoporosis that worry me. It's so hard to choose. These are the times when I wish I had a crystal ball.
Leah_S, thanks for the suggestion on seeing a cardiologist. I hadn't thought of that, but I'll make an appointment.
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Wobyon, I'm pretty sure that most cases of ovarian cancer occur later in life, usually after menopause. 32 is awfully young to lose your ovaries. I don't think you are crazy at all. You could also ask a genetic counselor about the actual risks of getting the disease at your current age vs. 10 and even 15 years from now. Good luck!
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Wobyon:
Ultimately it is your decision but I agree with your doctors. Please check out the FORCE website, which is dedicated to people with the BRCA mutations. It is loaded with information, guidelines, and clinical research.
I would also suggest that you speak with a genetic counselor - you can find one through Myriad Lab (who did your BRCA testing) or through FORCE. The genetic counselors are very good at explaining all of your options, the pros and cons of each, and only present the information. They do not sway you one way or the other - they just help to make sure you have as much knowledge as possible so that in the end you can make an informed decision that will be the RIGHT decision for you.
What I do know is that although ovarian cancer is more prevalent with BRCA-1 people, BRCA-2 women are also at high risk. The recommendation is that you have your ovaries removed around the age of 35 (or after childbearing). There is a double-benefit of having your ovaries removed. 1) You eliminate your ovarian cancer risk and 2) Having your ovaries removed at 35 and before menopause also significantly lowers your breast cancer risk as BRCA 2 cancers tend to be ER+ - not all, but most.)
In addition, please know that although the recommendation is to have ovaries and tubes removed, if you also combine it with a hysterectomy (uterus removed) you can then take estrogen only HRT that will resolve the issues you mentioned are concerns (bones, heart, etc.)
You can watch a webcast from last year's FORCE conference that discusses this exact issue: the strong advantages of having ovaries removed on bothh b/c risk and ovarian cancer risk, and the use of estrogen only HRT. I can't seem to post the link here but if you are interested send me a PM and I will get it to you. Two of my doctors watched this webcast and are in agreement.
Like you, I am BRCA-2 positive. To my knowledge I only have breast cancer in my family but no one knows for sure. I spoke with my genetic counselor in tears a number of times explaining this. The answer is simple: Unfortunately MANY women find themselves in the same situation - BRCA2, no family history of ovarian cancer but end up being the one with the ovarian cancer. s. Because there is no real screening for ovarian cancer it is too risky, in my opinion, to keep the ovaries. Tamoxifen can shut down the ovaries but it cannot prevent ovarian cancer.
I am 46 and am scheduled to have my ooph/hysterectomy next week. Although I am premenopausal, I have the same concerns as you. I only wish I had known about my BRCA2 mutation years earlier as I would have scheduled this when I was 35 or 40.
I know these are hard decisions - I am in exactly the same place. And they are all very individual and personal decisions. Just please make sure you have all of the correct recommendations and speak with a genetic counselor. I wish you the best of luck!
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Thank you, everyone! All of this is excellent information.
I have spoken to a genetic counselor at my treating hospital, but I think I am going to contact Myriad labs for a second consultation. I really need the objective approach so I can effectively make my own decision. I also have heard the same about Tamoxifen not being a good preventative measure for ovarian cancer.
Wow, I'm so glad I found this board. Thank you again, everyone. I'm sorry we all have to be in this dumb club.
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Wobyon,
I am 34 years old and am also Brca2. Since I do not have any children and I would like to possibly still have one... I am on a monthly zoladex shot. It shuts down your ovaries so they do not produce estrogen. I am kind of in chemical menopause. It is not bad and supposedly it keeps your ovaries from getting destroyed during chemo. That might be an option for you if you dont want to get your ovaries removed now. I hope this helps. Take care. Julie
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I, too, was BRCA 2 positive. I'm 46, BMX 4/15, ER+, on Tamoxifen. I found 2 lumps, both cancer, 2 months after a clear mammogram. Do I trust screenings very much? Not any more. So, after meeting with my Onco, and a Genetics counselor, it was a no brainer to get the ooph. OV cancer is so much harder to detect, and like I said, I found my own cancer 2 months after a mammogram.
Granted, I am older than you, so it made the decision easier. I have NO history of breast or ovarian cancer in my family although I happen to carry this inherited gene. The cancer diagnosis is hard enough, and I will do what it takes to make sure I don't hear it again. It's such a personal decision, so I can only tell you how it feels for me.
I had my ooph yesterday, lapro, and was told it would be a cake walk. Well, I am a girl who went didn't even spend the night for my BMX, or Recon, so I'd say I'm a pretty tough cookie. It's not a cake walk, quite painful from the actual surgery, and the gas that they fill you up with leaves you with the worst gas pain you can ever imagine. It's not in your stomach, so you can't burp/fart it out, it just has to dissipate on its own. Be prepared for feeling pretty awful for a day or so. Get help around the house. You'll be able to walk around, you just won't feel like it. Also, I've been crying for 3 days, and I'm not sure it's because I'm 'done' or still anxious over the pathology results of the ovaries, or instant menopause, or both. I hope this passes, right along with the gas!
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If I have any more surgery soon, I'll have to get help around the house...I have two small children that need care. That's another reason why I want to wait...I've already had to have family move in to help for a total of 9 weeks this year. I feel like I'm not competent to parent solo when I'm on a lift restriction that prevents me from being able to pick up my kids (they are 2 and 4).
Sullivan, you are a tough cookie. I'm impressed! I hope you feel better soon.
Julie, thanks for the info on Zoladex. I'll look into it.
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Lisa65inNY -
Great post! Brings together all the information that I've gathered into one read!
I have a question, though. Are they saying that estrogen-based HRT is OK even if you've been dx'ed with ER+ DCIS or invasive after you've had a hyester? I listened to a talk a while ago by Dr. Gralow and she mentioned that she believed it was actually the HRT that included progesterone which raised the cancer risk (and other issues).
Sullivan -
I'm sorry the after affects of your lapro are so painfull. I had my BSO last October and did not have any of the gas issues that you mentioned. My only pain was from the actual incisions and where the ovaries used to be. Lifting was not an option. After a week I felt much, much better. Since this was after 14 months of chemo, surgery, rads and a lilttle more chemo I was pretty beat down.
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I have that exact same question. I've read that HRT is a no-no if you've had ER+ bc of any kind, yet the high-risk clinic docs that want my ovaries removed told me that HRT is an option, and they like it because they can control the amount of estrogen as opposed to leaving me intact and letting my ovaries do whatever they want. Sigh. It's so confusing.
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Interesting discussion. I am not BRCA2 positive exactly....I have a "mutation of unknown signifigance" and at my follow up appt with my onc this month, he suggested that I think about removing my ovaries within the next few years. Even though he is having me do transvaginal ultrasounds every 6 months. Because (as others have pointed out) .. there is no trustworthy method of detection for ovarian cancer.
So although my onc says there is probably only a 5% chance of my "unknown mutation" being related to cancer ~ I should think about "playing it safe" and have them removed. I was kind of surprised since he hadn't mentioned ovary removal before - I thought that's why we were doing the ultrasounds every 6 months? Makes me wonder if he just had someone like me diagnosed with ovarian cancer?
I've been researching and did see that ovarian cancer is significantly lower for BRCA2 women than BRCA1 women. There was also mention that ovarian cancer wasn't much of a risk until after age 50 in BRCA2 cases.
Since I'm 44 and just started tamoxifen in Feb...I'm thinking maybe I'll wait 'till I'm at least 50? ...that way I can "multi-task" and get rid of them for ovarian cancer risk AND reduce the estrogen production since I'll be just getting off Tamoxifen by then and my cancer was highly ER+.
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My onc says that BRCA2 women are HIGHER risk for ovarian, and he was more insistent on the ooph than the preventive MX I eventually had. Very adamant that the screening is inadequate and most ovarian cancers are not found until quite advanced.
I had the ooph last October - laparoscopic, 2 small scar slits, and it's been relatively easy. No hot flashes, just some joint pain (likely Arimidex) and my metabolism has slooowwwed, but it's better than cancer.
good luck with the decision making. it can be overwhelming.
j
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elmcity69...your onc said BRCA2 women are HIGHER risk than BRCA1 women??
Everything I've found said it was significantly lower..like this link --> BRCA1 had a 39% lifetime risk vs. BRCA2 had a 11% lifetime risk.
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Elm, did you get the doc's reasoning right? Of course there are huge problems because of ineffective screening, but BRCA2 is consistently showing lower risk, especially at younger ages, in one study after another...
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Mutd ~ that's what I've been noticing in the recent research as well. This one, in particular, I have copied and will be presenting/discussing with my onc at my next visit. (bolded items by me) My main point being that I'm thinking there is no reason to "panic" and that you have to outweigh the risks of premature ovary removal vs. maybe waiting until you are over 50 for removal?
BRCA2 - Female Breast and Ovarian Cancer Risks
In the 22 population-based studies of Antoniou et al [2003], the BRCA2- related risk estimates to age 70 years for both breast and ovarian cancer were 45% (95% CI = 33% to 54%) and 11% (95% CI = 4% to 18%) respectively.
In another population-based study, BRCA2-related breast and ovarian cancer risk estimates to age 80 years were 41% and 8.4% respectively [Risch et al 2006], the lowest ovarian cancer penetrance estimate yet reported.
When corrected for ascertainment, the cumulative cancer risks to age 70 years for breast and ovarian cancer in BRCA2 heterozygotes were reported as 49% and 18% respectively [Chen & Parmigiani 2007].
The risk for ovarian cancer, although lower than that observed in heterozygotes for a BRCA1 mutation, is still greatly increased above the general population (1.4%). Ovarian cancer in BRCA2 heterozygotes is more likely to occur after age 50 years than ovarian cancer in BRCA1 heterozygotes [Risch et al 2001].
The contralateral breast cancer risk in BRCA2 heterozygotes is 12% within five years of the initial breast cancer diagnosis [Metcalfe et al 2004].
As for BRCA1, the risk for BRCA2-related breast and ovarian cancer appears to be confined to epithelial malignancies of both organs as well.
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i remember it succinctly, because I remember thinking, "f*#(, hit another jackpot". and BRCA2+ is also linked to higher rates of melanoma, per my dermatologist. wtf?
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Most of the early population studies were in the Ashkenazi Jewish women, just because the mutations are more common among them and so it was easier to find enough participants for a study. So the physicians would argue, like, maybe this result doesn't quite apply to you ... possibly it's just about the one specific BRCA2 mutations which is found in Ashkenazi Jews ... But more recently, the results come out from all other ethnic groups, and the gist of the story remains the same. That both genes markedly increase ova ca risk in all ages, but even the increased odds are still kind of low for the younger BRCA2+ women. Like for example this NIH webcast which literally says, "if one has early ovarian cancer, or if one has a strong family history of ovarian cancer, then expect to find a BRCA1 mutation ... not a BRCA2 mutation":
http://videocast.nih.gov/summary.asp?Live=10534
Dermatologist ... of course I would heed the doc's advice, and you know why. It's just a doctor's appointment, and it's all in plain sight sort of. Nothing like the ovaries...
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While I have also heard that BRCA1 women are at greater risk for ovarian cancer than the BRCA2, those with BRCA2 are also at greater risk for melanoma and pancreatic cancers. My MO has me seeing a dermatologist at the cancer centre on a regular basis. Unfortunately, there is no screeing for pancreatic. I think there is also a greater risk for colon cancer. Does anyone else know the data?
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Hrf, I heard that there is no link to many "common" cancers, such as colon, endometrial, cervical, or thyroid. Pancreatic cancer connection is real, although even the elevated risk may still be so small, and the prevention strategy pretty much nonexistent ... why give it too much thought? (The link is still important for a very different purpose. Like if you are trying to decide if you need a test, or if you need insurance coverage ... then sometimes a case of pancreatic cancer in the family just might make a difference)
In any case nobody says that ooph is a way to cut pancreatic or skin cancer risk. It does cut the breast ca risk of course, probably because of the role of estrogen.
There is a recent study of Dutch high-risk families which also says that the ovarian cancer risk is smaller in BRCA2+ women than in BRCA1+, and the BRCA2 risk is shifted to later ages (approx 10% ovarian cancer risk before age 60, but rapidly tripling in the next decade! For comparison, BRCA1+ women in the study had over 50% risk of ovarian cancer even before age 60)
BTW the Dutch researchers also note that population studies produce smaller risk estimates, but they still cling to an unproven hypothesis that "the past high risk carries over to the future" (although usually the "past high risk" is just a random streak of bad luck which isn't going to continue in the future).There aren't any good data on the "future risk" of ovarian cancer in BRCA women, but in Canada, Steve Narod just reported the results of a prospective study of breast cancer. And just as expected, the "future risk" in Narod's high-risk patients turns out to be lower than the "past risk".
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Thanks for the additional info Mutd! I will have plenty of info to help facilitate discussion at my next oncologist appt.
And I agree about your thoughts on the pancreatic cancer connection. With the connection being so small... and nothing we can really do for "prevention" ... why waste time worrying about it.
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Hi. I've got a question for all of you who seem so knowledgable. I need some advice! Here's my story.
I tested BRCA 1&2 negative but chose to do the extended sequencing test (expensive!) as I am the seventh cousin through my maternal grandmother to be dx with breast cancer. My mother, grandmother and aunt don't have it, but we are seven (Ashkenazi Jewish) cousins all dx in about our forties. The results showed 3 BRCA mutations but none of 'known significance.' none of the other cousins have done the sequencing test so no way to know if they'd have the same mutation. I have a daughter so I wanted to know, but still don't really have a clear answer.
I am 50 and am currently taking zolodex shots monthly due to a SE of tamoxifen that caused my ovaries to produce too much estrogen. Problem is that you can only take the shots for two years and then if still premenopausal, I'd need the ooph anyway. A few GYNs I've seen recently urged me to remove my ovaries. I've had a hysterectomy (kept ovaries) in 2008 and that makes an ooph a bit more complex. However lately I'm just wanting it mostly because I have a feeling (hate to make such a big decision based on a hunch) that our 'gene' just hadn't been found yet. All of the cousins have either passed away or had oopherectomies so no ovarian cancer. But I don't want to wait around to be the first. You likely know more than me about the gene issues. What do you think? Incidentally, my world famous genetecist says that I'm no more likely to get OC than the general population.
I am meeting with my GYN tomw to discuss the ooph tomw. Any insights would be appreciated.
Thanks! S -
Hi. I've got a question for all of you who seem so knowledgable. I need some advice! Here's my story.
I tested BRCA 1&2 negative but chose to do the extended sequencing test (expensive!) as I am the seventh cousin through my maternal grandmother to be dx with breast cancer. My mother, grandmother and aunt don't have it, but we are seven (Ashkenazi Jewish) cousins all dx in about our forties. The results showed 3 BRCA 2 mutations but none of 'known significance.' none of the other cousins have done the sequencing test so no way to know if they'd have the same mutation. I have a daughter so I wanted to know, but still don't really have a clear answer.
I am 50 and am currently taking zolodex shots monthly due to a SE of tamoxifen that caused my ovaries to produce too much estrogen. Problem is that you can only take the shots for two years and then if still premenopausal, I'd need the ooph anyway. A few GYNs I've seen recently urged me to remove my ovaries. I've had a hysterectomy (kept ovaries) in 2008 and that makes an ooph a bit more complex. However lately I'm just wanting it mostly because I have a feeling (hate to make such a big decision based on a hunch) that our 'gene' just hadn't been found yet. All of the cousins have either passed away or had oopherectomies so no ovarian cancer. But I don't want to wait around to be the first. You likely know more than me about the gene issues. What do you think? Incidentally, my world famous genetecist says that I'm no more likely to get OC than the general population.
I am meeting with my GYN tomw to discuss the ooph tomw. Any insights would be appreciated.
Thanks! S -
S, most of us would probably agree with your geneticist that being an Ashkenazi, with no mutations in BRCA genes and no history of ovarian cancer in the family, gives no reasons to worry about ovarian cancer. Besides, if there was a strong genetic risk factor shared in your family between you and the cousins, then it must have touched your mother as well, and her mother as well, and perhaps some of the mothers of the cousins?
Did you get the complete BRCA1/2 testing in Israel or in the US? In the US testing, it would have been very unusual (but perhaps not impossible) to get a list of three "unknown significance" variants ... because after 15+ years of high volume testing, even the most rare Ashkenazi mutations aren't really "unknown" any more. And three "unknowns" sounds like far too many.
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I am positve for BRCA 1 and BRCA 2 and prophylactically had an opherectomy when I was 41. My recovery was quick and I had little side effects. I was done having children so the timing worked for me. A very personal decision that we each have to make unfortunately. About 6 mos later, I was diagnosed with BC, (IDC), went through chemo and lumpectomy, and have been clear for 8 years.
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Hi. Mutd, thanks for your response. Apologies for not thanking you sooner. I had the ooph on Thursday. Pretty bad gas pains since, but I am feeling better slowly. I guess the air that they fill you up with so they can see laparoscopically is not insignificant. Overall glad that it's done. No more shots each month. I can see how they'd make sense for someone younger, but at nearly 51 I couldnt see keeping this up for two years and then maybe still needing the surgery.
Muted, re the database they use here in Israel, I'm fairly certain that it's international database. I was told to keep checking with them but that three mutations of no significance can happen. Truthfully, none of my cousins w BC had the extended sequencing test so it's impossible to know if we've got a common mutation, but I didn't want to hang on to those ovaries while waiting to find out. Science just doesn't seem to have caught up to circumstance yet. I have no sisters and only one aunt, not alot of close female relatives. The fact that no immediate relatives have BC but seven cousins in my maternal grandmothers line do is weird enough for me. Maybe we will know more in the coming years...
Shari
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