Bottle o Tamoxifen
Comments
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florbo - I am fattered that you like my handle.
Leggy - Yes, I had AC x 4 dose dense then 12 weekly T. I don't know the proper shorthand for that yet. Anyway, the hip pain started before I started Tamox so I would think that has nothing to do with it, except that so many on the Tamox board seem to have it. ??? The pain and stiffness seem to be decraesing. I started taking Glutamine about a week ago and my neuropathy is much better. I still have it all the time but not as intensely and without the difficult pain I was having at night.
The result are back on the BRCA1/BRCA2 test. No mutations were found. I am so glad! That means my family members don't have to worry as much about carrying a cancer gene. It also means there's no call for a hysterectomy. I really would rather stop with the surgeries already!
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YOTH-
YAY! Congratulations on your good BRCA test results! I got that, too!!
Helena,
No, I don't HAVE to switch to an AI... It's just MY onc's plan for me... He said I was to take Tamoxifen for TWO years, and then switch to an AI for... (I think) 5 years. But, to be honest, if I could, I'd try to stick it out for 5 years on Tamoxifen, even though it's been a rocky road for me, since I had to have a D & C last summer, due to uterine polyps, which were caused by the Tamoxifen. I'd do 5 years on Tamoxifen, and then switch to an AI, for 5 more years... that way, I'd feel like I have the protection of the anti hormonal drugs for a longer period of time.
Although, my onc said that we can take the AI's indefinitely... but when I pinned him against the wall, he admitted that he doesn't know if it's safe to take AI's forever...
I hear you on the libido thing... it's getting better, and I'm over two years from my bc dx now. I also think that the reconstruction helped me to feel more like a woman.
This stiffness... it does get a little better over the course of the day. It's gotten to the point where for me, I almost don't want to go to bed, because I know I'll feel like a 90 year old woman when I wake up, all stiff... My dh makes fun of the way I walk, but just the other day, I explained to him how I feel in the morning... he'll probably still make fun of me... ....sigh MEN!
Hope everyone is doing great.
My dh and I are going to Key West for a week. We are leaving on Friday, and I can't wait.
Take care.
Hugs
Harley
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My test reults are in, BRCA1 ok/ BRCA2 had mutations. I see a surgeon fri the 17th to dicuss having my ovaries removed. I was expecting a positive result since my mom was so young when she died from Ovarian Cancer.
The Genetic counselor said the s/e's are a good sign that the tamoxifen is working.
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Harley- love the image of you pinning your ONC to the wall...
YOTH- am i the only one who doesn't understand what your handle is about?
and i wonder too what happens after 5 years... i read soemwhere along the line that hormone positive breast cancers are more likely to be ones that recur in 20 years... so like uh... Well I guess I will get into that with my ONC as we progress...
I keep thinking how much they have learned in the last 5 years. 5 years ago I would have been doing chemo because they didn't have the OncotypeDX test. Here's hoping that 5 years from now they will have something more for us...
Mary- your test results stinkomatic. On the other hand, there's maybe some closure for what happened to your mom, and I am sure she is smiling up in heaven with relief knowing that her little girl has better options than she did. Sort of the same thing, I don't know how long they have made BRCA testing available, but its one more thing we have that is new to fight cancer.
Hugs hugs and see you soon {{{{}}}}}
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Yeah Nancy - fantastic news - tick that one off the list.
Oh and Mary, what a bummer but this is knowledge - you can now do your best to kick its butt. I'm still waiting on my results (take up to 6 months over here in Australia - its all that desert!!!) and I will certainly look at having my ovaries removed if positive. (((hugs)))
And yes Rachel I too think that in 5 years (well 4 years and 8 months to be precise) more will be known about hormone therapy and dosage - I am confident that by the time my two girls (aged 10 and 7) are young women there will be amazing new developments in diagnosing and treating this bl*#dy crappy disease.
soft hugs everyone and Harley have a great holiday.
Helena
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Mary, sorry to hear about your results, but glad it wasn't a shock to you. Hope that it's not necessary to get the ovaries out and that it can just be monitored closely.
Harley, I'm with you on the tamoxifen vs. AI thing although for different reasons. I don't like the idea of depriving the whole body of estrogen vs. just blocking it from the breast cancer cells. I'm curious, you mentioned your libido is getting better. Was it the tamox that affected it? And have you done anything that caused it to improve? Hope you enjoy Key West!
Kfinnigan, age 48 here and so happy you understand what I'm going through. I think if I hear or read one more thing about using lubes to help the libido I'm going to scream. Lubes help the dryness and atrophy, but not the sensation and desire. And for me it stinks, because I had a little taste of supplements that helped the problem, then weeks after starting them, found out about my BC, so had to quit them.
For all of you discussing the aches, mine always feels better once I start moving around.
YOTH, that is great news, you get to keep your ovaries, maybe they will eventually come back to life. What kind of supplements are you taking?
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I look at it this way( I hope I do not offend anyone w/ my beliefs) I believe in guardian angels and I believe that God really does work in mysterious ways. Back in Sept 2008 I had irregualr bleeding, due to my mom's history I immediately called for an appt. Dr office was like well we can see you in Nov, I said no tomorrow, I have an IUD and should not have heavy bleeding. They got me in. Dr saw I had not had a mammo, so he sent me for a mamm and w/ a vaginal ultrasound. I missed a call that cancelled my vaginal ultrasound so I showed up for Mammo and ultra sound they saw me. Ultra sound was ok, but mammo was bad, needed second. I was then told we could wait 6 months for another or I could have a biopsy, Well I chose the biopsy and the rest is history. If I would have waited until Nove I would have cancelled that gyno appt until summer, since I an off in the summer( why waste a sick if I do not have to) My mother, father(my dad died Aug 2008) or guardian angel were looking out for me. Now I have options. Better to know since there is no real test for ovca until it is too late. God did His work and I an grateful. Again I hope I do not offend anyone,I understand that religion is a very personal matter. I just wanted to share my story.
Hopefully having my ovaries out will not decrease my sex life( or what it left of it) Of course I will no longer have to worry about pregnancy. Got some tonight!
About aches and pains, i am not sure I can blame mine on tamox( I have osteoarthritis in both knees, due to 18 yrs working retail, I also have chronic lower back pain from an injury while working retail) However, if the pain gets too unbearable ask your dr about physical therapy. Along w/oa I tore my meniscus in my left knee, no surgery only pt and it worked wonders. I still do the exercises. Also try yoga or belly dancing. When my hubby was in Iraq, I went to a few belly dancing classes and they also work on stretches and relaxation techniques. It was through a Women's Wellness centerand my instructor worked w/ bc survivors. i have been using some of the techniques to help with shoulder pain. Heating pads, Aleve or Ibuprofen also work wonders. Also maybe ask your doctor about Lycria(not sure if I spelled it right) it is for fibromyalsia pain, it might work if other pain meds are not working.
Well now that I have bored you all to tears, I will sign off for now.
Good night and Good luck with everything.
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Hi
Can anyone help me is the Tamoxifen going to put me through menopause? I'm 43 years old I finished chemo a few months ago and I just started my period again. I'm just a little confused why I'm taking this for 5 years and my doctor just confuses me more at first he said it would put me through menopause and now he is saying it won't that's why I'm so confused. Will the Tamoxifen make me stop my periods again? Could someone please shed some light on this for me.
Thank you Lynn
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Lynn, hmmm I looked it up on this site, here is the response:
http://www.breastcancer.org/tips/menopausal/ask_expert/2002_03/question_10.jsp
Harley, have a blast in Key West girl!
Mary, glad you got some last night
!Ok, we all need to get some tonight! LOL!
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Lynn, from what I've read, it varies greatly among women, who will still have periods, and who will permanently stop having them. Also, some women stop them while on tamoxifen, but then they resume again once finished. Same thing for chemo. I think the closer to natural menopause someone is, the less likely that the periods will come back after tamoxifen and/or chemo.
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Ladies, I need some help, Please!! I remember a post by a lady who had an ooph and was out gardening the next day, not sure if it is here or the rads thread. I had a couple questions for her.
1. why ooph and not hyst
2. did you have a regular gyno do it or someone who specializes in reproductive surgeries?
Lyn glad you came over, I hope you can find the answers you need.
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patmom~
Hi, yes thank you for your concern, my oncologists have already done an ultrasound on the calf, no clots! Yes, Tamoxifen can cause blood clots, and anytime you have pains in the calves, one must get that checked out...but we're finding it's just muscle pain...best not to walk when it gets that bad, on and off, it's not bad at all.
So funny to read about the hip pain alot of you are experiencing. My bone scans/dexa scans show no bone loss, but yes, I also have one-side hip pain (same side as cancer, ironically).
All in all, I will take the s/e's of tamoxifen, then whatever the AI will throw at me. About the periods...I was totally pre-menopausal at age 46 when dx'd, the first DAY of TAXOL, *BAM*, put into instant menopause, 10/2006...no periods since then, and showing now POST-menopausal on my hormone levels. So the switcheroo to the AI is coming shortly...All my best to you all...s/e's vary...and I actually only am concerned with the main ones (blood clots)...still have the hot flashes, that came in ONE DAY with the dose-dense taxol/chemo therapy. WOWSA...:)
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Rachel,
Well, my onc and I went head to head, at first... when I 1st saw him, he was my 2nd opinion dr. and he was very nice, he even held my hand and everything. He said that he was fine with me not getting chemo, and that I needed the oncotype test... He even called his rep, and got them to do the test for FREE... since my insurance didn't cover it. Then, when my Oncotype results came in ... they were in the gray area, and I decided to do chemo anyway. My onc. wasn't too happy about that, especially when he found out how much $ he was going to get from my insurance... He wanted to give me Adriamycin and Cytoxan, but I said NO WAY!
In the end, he saw it MY WAY... I had 'only' 4 tx of Taxotere & Cytoxan...
So, yeah, I DO pin him to the wall!!!
We aren't leaving for Key West til Sunday...change in plans...
rgiuff,
Well, let's say this... I still have the dryness issue, and ... ahem.... some other problems with sex... but, I am actually finding that I'm feeling... 'in the mood' more often. I'm guessing it's because my self esteem is better, since my reconstruction... these fake boobs are actually better than my REAL ones were! lol Only there is the thing... I really don't feel the 'arousal'... from touching my breasts... I can still feel them, but that part is gone...
Anyway, I better get going... still gotta pack and all that stuff!!
Hope everyone has a great weekend!!
Hugs to all,Harley
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I came to talk about SEX! (Oooooh that's an accidental double entendre) First- a little about joint pain. Like hot flashes, joint pain has been shown to have a REDUCED RECURRENCE rate... so enjoy it ladies!
Mary- I PM's you who that was, and I PM'd her too (and of course I am not offended by your post- ROCK ON)
Lynne- hang in there, we all had those questions to start with, here's somewhere to start:
http://www.cancer.gov/clinicaltrials/digestpage/BCPT
it's why you're taking Tamoxifen
and here's some more, we love this:
http://www.mskcc.org/mskcc/html/92358.cfm
more later, but I'm in a rush ... for the gals who have been losing libido...
I had a sort of revelation last week or so. Short form: I ended up feeling "pretty". Feeling "pretty" or as EWB said on another thread "put together" has a REALLY big impact on how I feel in general. OK OK, I had no idea I was this vain, but it goes with the territory. I had really forgotten the whole vanity thing between the cancer and the baby over the last several years. Again, as EWB said, there really IS something about "Look Good Feel Better". So my question or theory or whatever is this... for the gals who are feeling OK on Tamoxifen but finding themselves disinterested in sex, even with lovely partners/SO/spouses, have you been feeling "pretty"? Attractive? Put together? When did you last have a facial, manicure etc? Could that be something helpful?
As one who has no partner, and also haven't started my Tamoxifen yet, there's no way I could know myself if this has any real effect, but like Helena Queen of the Desert- clearly you are a pretty woman. You have been dealing with a "muffin top" over your jeans, and that's a tough one on the ego, especially if it hasn't been your lot before. Are ya feelin attractive? A lot of your pictures show really pretty pics... and this cancer expletive expletive fill in the blank with your own favorite expletive is just about the ugliest ugly there is. Is there any chance that if you gave yourself a good pampering, primping etc (for me it was losing some weight, getting a little tan, doing all my facial masques and body scrubs) you'd be feeling frisky again?
What would it take to get you to sing that song from West Side Story again... I feel pretty, oh so pretty, I feel pretty and witty and wiiiiiiiise... and I pity any girl who isn't me tonight......
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Can I just say, I've had a really draining day on a personal level? I mean, the suction is almost audible. I hope I will have less to deal with tomorrow so I can be present for the things that nurture me, like these baords. I am fine and there are no surprises, just life's age old imperfections, but OMG what a day!
Rachel - Year of the Hat like Year of the Cat, the 1976 pop hit by Scottish singer Al Stewart (I googled it). But it's Year of the Hat as in, "I am bald lately".
Hope everyone is well. I shared some egg salad with my Chihuahua and am starting to decompress. Have a great night, or day, for those of you on the other end of the world.
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Ah YOTH- that did occur to me (the needing a hat part, not the Al Stewart part) but my mind went fuzzy and I forgot...
what?
whut?
uh...
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Don't forget WHY?
Why?
Why?
WHY??
No, no -
I'm fine.
I'm gonna get in there an' go bed. See ya tomorrow.
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Hot flash here. Day #3 of tamoxifen and I was so irritable today. Is that related to starting the tamox?? Does it get better?? I started the stiffness and hot flashes with my chemopause - - have never really wanted to take a medicine everyday, but will see how I do with this one, for the cure of it.
Night Ladies, thanks for being here
<--this emoticon should say "hot flashing" rather than "embarrassed" 0 -
Just finished the day at work and catching up with all the posts ... Rachel you made me cry .. must have hit a nerve. You know I look in the mirror and I don't see me anymore, I've changed. I'm sure most of it is just my mind playing tricks but I do feel my "spark" has gone and it shows in my face - and yes, it is a damn ugly disease!!! With my new "foobs" it has helped a little bit but this BC stuff certainly can age you. My skin feels thinner my wrinkles more wrinkly, blah blah blah. I also haven't gone for a good run for nearly 3 weeks now (due to my exchange surgery) so I miss that "high".
It is also winter over here and the weather has been just crappy. Rainy, cold and grey - enough to make you feel urk.
Aren't I a wowser!! Sorry ladies, obviously feel a little like you YOTH - drained
Maybe the tamoxifen is sneeking up on me again - nah just a sad day. Rachel I will conduct a study for you and will make an effort everyday from tomorrow and see if the look good feel good theory stands. It couldn't hoyt! Might even scare my DH and make a move on him (oh my god that's is scary).
Princess - yeah, number three almost over - hot flashes means it is kicking butt!! As for the irritability, well it will probably come and go and hopefully then just disappear.
Hugs everyone
Helena
(luv ya Rachel)
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Rachel, thank you for the reminder of 'do you feel pretty'...I've been pondering that lately and today put on a cute work outfit and thought to myself 'now you look good today'! LOL!
Helena, I hate hate hate cold dreary winter days!!!! Hang in there!!
Back to work, here's to a day with mild hot flashes!!
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Hi Kari - at your suggestion I'm reposting my question about summer heat and hot flashes here.
I've been on tamoxifen since April and in the beginning experienced only some mild hot flashes. Well, ladies, we've had record heat here in Texas for the last month and my hot flashes have gotten out of control! It's been over 100 degrees for weeks with no relief in sight. I've gone from a few mild hot flashes a day to pretty much non-stop hot flashes. Is anyone else experiencing an increase in hot flashes with this incredible summer heat? Are they related or is it just the tamoxifen really kicking in? Someone please tell me the flashes will settle down in the fall.
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Princess, yes, I was extremely irritable when I first started taking Tamox. I felt like I was biting everyones head off.I could not survive that way since I work with children. I called my ONc and she started me on Effexor XR, which worked wonders.
Helena, at least the hot flashes can keep you warm LOL! It was March here when I started Tamox, still cold in the poconos, so the hot flashes did not bother me. So far our summer has been fairly mild too! I feel lucky on one aspect.
Now everyone needs to do something special so they will feel pretty! Maybe i will take my 8yr old daughter and we can get manicures tonight!
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Thanks Mary and Rachel
I'm going to try a meditation class (before Effexor, but that may come later...) and also focus on losing some wt. to, hopefully, feel pretty again. Good suggestions.
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Princess is right, you'd think this board would have a hot flash emoticon!
Helena Queen of the Desert, Rock it Babe. Get out the pumice stone, your favorite bath potions, think about the rain washing everything old and icky away leaving everything bright and new, give your head a good scrub, do every face masque in your cabinet... hand and foot creams (and throw otu the outdated stuff), do a little yoga, or stretching, or whatever is allowed, dig in your closet and find some fabulous tight sweater or soft scarf, do the woman thing...
kfinnegan YAAAAAAAAYYYY yay for cute outfits and looking good! It's totally weird, right? Like remembering a song you used to know all the words to. I just remembered the sort of snarling animal I became walking to RADS each day. Trolls under bridges were my peers.
JanMarch- Yes, there is a relationship between heat and hot flashes. This is why my ONC is letting me wait until September to start. Everyone I have read on BC.org says its more comfy to have the hot flashes in the winter (like Mary just said). Also the average seems to be 3-6 months of hot flashes that calm down (although certainly not for everyone) after that. Also good news is that if you are having hot flashes, your recurrence rate is even lower
(This from my ONC and the American Cancer Society and Susan Love's web site, lemme know if you want the links.) Mary- I was REALLY irritable today, and I am not on Tamox... its my period thing. I am mean as a junkyard dog!
Yeah Princess, do some "me" stuff. It's good for ya.
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Hi ! How is everyone doing? Anyone postponing tamox? Anyone having their ovaries removed? There is so much to consider and I am just confused and scared. Hope I can get help here.
Thanks! Susie
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Susie, I am not yet on Tamoxifen, trying to lose weight before I start. Even though all the empirical data says there is no weight gain from Tamoxifen, still there are plenty of doctors saying it will be harder to lose weight on Tamoxifen, but just anecdotally. So I was fat already and already on a diet (lost 15 pounds woohoo but now bad habits saotaging myself). I am here basically to learn from the gals already on Tamoxifen.
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Questions I keep forgetting to ask. Rachel, what is vitamin D3 for, besides bones? Is it to replace what is lost due to estrogen reduction?
How many ladies have sleepless nights? And it is not like I lounge and sleep all day. Even if I have a bad night the only thing I do is sleep a little longer in the AM(while the kids are still quiet). Last night I went to bed at 8pm and slept until 11pm(hubby having bad dream) went out on couch and slept until about 8am. I had a busy day, did not get manicure with my daughter, made cheese steak sandwiches instead(hubby help cut up peppers an donions). I did go shopping, my 11 yr old son is going through puberty, and now my 8 yr old daughter is developing boobs and needs deodorant. They are too young for all this, scary, makes me feel old.
Back to topic, some nights I sleep great and then other nights I just can not sleep. It may not even be related to tamox, it could just be all this cancer related stuff. I have been really thinking hard about my + BRCA 2 Results. It is not bad enough that every time my other breast hurt I wanted to run for a mammo, now I have so much to worry about.
Everyone I talk w/ has said I should go for a complete hyster, not just ovaries, since tamox increases risk for uterine cancer that is not a bad thought.
As Alan Parson's Project put it "Where do we go from here?..." I have the cassette I may have to take it out and play it.
Or as Bon Jovi says" Right now you are exactly where you are suppose to be"
I can remember always subconsciously fearing cancer, breast or ovarian, then when a gyno told me that my mom's was probably from a virus, I felt at ease and did not go back to gyno for 2yrs, that was 2006. Good thing I went in 2008.
Well they say knowledge is power and now I have the power, that is the only way to look at this.
Well now I will ramble on, sing my song, in the words of Led Zeppelin.
Too many quotes, but there is so much going through my tiny brain right now, I am really wired!
Good night!
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Once again lots to read. Well got up had shower, washed hair, put on nice"around the house" clothes .... result ... well didn't feel particularly pretty but sure did feel good and I have had lots of energy. 1st day of school holidays so no time now in the next two weeks to sit around and do the nails - might do some make-up practice with my girls, but that always just ends up in a big mess!!
This is so hard - wanted to say lots of stuff but find I can't scroll back a page without losing all my typing!!! Doh!
Mary - Anyway it is still cold, but not rainy (yay) but since I'm not getting ANY hot flashes I'm doing the big wooly sox thing.
Kari - well done - by the way you look absolutely beautiful in your photo so I'm sure you don't have to try too hard.
Princess - I have had a script for Effexor for just on 5 weeks now (had a bout of bad depression a few months back when I first started tamoxifen) and haven't had to use it yet. Fingers crossed!!!
PS. I weighed myself today and did the tape measure thing and believe it or not I am exactly the same as before bc and tamoxifen - just more wobbly I think - well I know. So there you go - it is really a big bl#*dy mind game.
PSS. Was going to get all sexy last nite but DH came home from work feeling sick. Mmmm - call that either good or bad timing .. not sure. LOL
Have a wonderful weekend ladies .. I'm off for a glass of white wine and to make dinner.
soft hugs
Helena
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Mary- the D3 is to fight breast cancer! It started with that video link from Sloan Kettering's Breast Cancer guy, Larry Norton:
http://www.mskcc.org/mskcc/html/92358.cfm
(thanks to DDLat and YOTH)
and then I asked my ONC (also at Sloan Kettering) about it and he said:
"there is no harm in supplementing
with Vit D and regarding cancer prevention it may do a lot of good! "
and he sent along an abstract from the study I can send you, but here's the conclusion:
"
RESULTS/CONCLUSIONS: It is projected that raising the minimum
year-around serum 25(OH)D level to 40 to 60 ng/mL (100-150 nmol/L) would
prevent approximately 58,000 new cases of breast cancer and 49,000 new
cases of colorectal cancer each year, and three fourths of deaths from
these diseases in the United States and Canada, based on observational
studies combined with a randomized trial. Such intakes also are expected
to reduce case-fatality rates of patients who have breast, colorectal,
or prostate cancer by half. There are no unreasonable risks from intake
of 2000 IU per day of vitamin D(3), or from a population serum 25(OH)D
level of 40 to 60 ng/mL. The time has arrived for nationally coordinated
action to substantially increase intake of vitamin D and calcium."
About the BRCA test results, I forgot whatever I knew about that after I got my results some months ago, but I will be happy to go digging around for info. I do remember seeing a great reliable article when I looked up Renee's Oomph Salpingo thing, that one (removing the ovaries and fallopian tubes) was definitely helpful for BRCA patients, but you already know that. All I know at the moment about the uterus and boobs is that at least they can semi reliably monitor and check the boobs and uterus. And with all three, uterus, boobs and ovaries, even if they remove them, there's always tissue left behind that can get the cancer. So like even with the ovary removal, get PET/CT scans to check. This is one for the ONCs to advise imho. But meantime, we can do some huntin... :::getting on my Elmer Fudd hat:::
Quick search on Susan Love brought up this for BRCA patients:
FORCE- Facing Our Risk of Cancer Empowered
facingourrisk.org/
And this:
Dr. Love Reports from the 2009 ASCO Annual Meeting
June 4, 2009
... if further studies confirm these findings, will see that PARP inhibitors become widely used to treat women with BRCA mutations, in much the same way that Herceptin is used to treat women whose tumors are HER2-positive.....
What's a PARP?
and then there is some about the biphosphonates- that's the Zometa i keep nagging you to ask your docs about... biphosphonates are good with Tamoxifen or AIs, lowering recurrence rates to 2%. But the studies also use shots to shut down the ovaries, and thankfully, my ONC doesn't think I need that. If I get my ovaries out, that takes care of that problem.
Did anyone say what happens to your period and fertility if ovaries are out?
Then she has some disappointing news about the Vitamin D3..."here is also data that you can have too much vitamin D; as with everything it is a U- shaped curve with problems at both ends of the spectrum. The session confirmed my suspicion that the hype about Vitamin D is premature. The best thing we can do to prevent breast cancer is exercise, but maybe doing it outdoors will give double benefits!". But this is handled by having your Vitamin D level checked. I'll have mine checked when I see my ONC.
And then over on Cancer.gov (national cancer institute)
http://www.cancer.gov/clinicaltrials/results/preventive-surgery0502
Preventive Surgery Can Reduce Cancer Risk in Women with BRCA Gene Mutations
Oh goody, this is the one I saw before...
"Preventive surgery to remove the ovaries and fallopian tubes can decrease the risk of breast and gynecologic cancers in women with a genetic mutation that puts them at high risk for these diseases, according to a study published in the May 23, 2002, issue of the New England Journal of Medicine. A second, separate study in the same issue found that the preventive removal of both ovaries reduced the risk of breast, ovarian and other gynecologic cancers in women with the BRCA1 and BRCA2 mutations.
The first study, led by Noah D. Kauff, M.D., of the Memorial Sloan-Kettering Cancer Center in New York, NY, involved 170 women age 35 and older, all of whom carried either the BRCA1 or BRCA2 genetic mutation (see the journal abstract). Women with these mutations have a 60 to 85 percent risk of developing breast cancer and a 15 to 65 percent risk of developing ovarian cancer by age 70.
The medical name for the procedure performed in this study is a salpingo-oophorectomy. "Salpingo" refers to the fallopian tubes. "Oophorectomy" means surgical removal of the ovaries. Although the procedure is widely recommended in carriers of the BRCA1 and BRCA2 mutations, no previous studies had followed patients after the surgery to see whether they developed fewer cancers than patients who did not have the surgery.
Study participants were offered the choice of undergoing either preventive surgery or surveillance for breast and ovarian cancer. Surveillance included annual or twice-yearly gynecologic exams and twice-yearly vaginal ultrasound exams and tests of blood levels of CA-125, a protein that is a marker for ovarian cancer. Women who had not undergone preventive mastectomies were advised to have annual mammograms (an x-ray of the breast) and frequent clinical breast exams and to perform monthly breast self-examination.
During a follow-up period that averaged two years, three of 98 women who chose preventive surgery were diagnosed with breast cancer and one with cancer of the peritoneum (the lining of the abdomen). By contrast, of the 72 women who chose surveillance, eight were diagnosed with breast cancer, four with ovarian cancer, and one with peritoneal cancer. The time to development of cancer was longer in the surgery group than in the surveillance group.
n the same issue of the journal, another group of researchers reports that the preventive removal of both ovaries reduced the risk of breast, ovarian and other gynecologic cancers in women with BRCA1 and BRCA2 mutations (see the journal abstract). In this multicenter study, led by Timothy R. Rebbeck, Ph.D., of the University of Pennsylvania School of Medicine in Philadelphia, researchers examined 11 cancer registry databases and identified 551 women who had undergone the preventive removal of both ovaries. They compared the number of cancers in those women with the number of cancers in a matched control group of women who had not had the oophorectomy surgery.
Among 259 women who had preventive surgery, six were found to have stage I ovarian cancer at the time the surgery was performed; two women later developed peritoneal cancer. The follow-up period for this group was about eight years. By contrast, among 292 women who did not have surgery, 58 developed ovarian cancer during a follow-up period of nearly nine years.
Among women who had not previously had breast cancer, the disease was diagnosed in 21 percent of those who had preventive surgery (21 of 99 women), compared with 42 percent of those who did not have surgery (60 of 142 women), during 11 years of follow-up.
These two studies "contribute to mounting evidence" supporting preventative surgical removal of both ovaries "in carriers of BRCA mutations as an effective way of reducing the risk of both ovarian and breast cancer," comments Daniel Haber, M.D., Ph.D., of Massachusetts General Hospital in Charlestown, Mass., in an accompanying editorial. "Whether the resulting reduction in the risk of breast cancer, combined with intensive surveillance, is preferable to the more complete protection offered by prophylactic mastectomy [surgical removal of one or both breasts to try to prevent or reduce the risk of breast cancer] is likely to remain a highly personal choice."
Well, so that's about the ovaries but that part at the end about "prophylactic mastectomy" being "more complete protection" leads me to want to know more about that....
So there's this:
http://jnci.oxfordjournals.org/cgi/content/abstract/93/21/1633
The damn New England Journal of Medicine makes you pay for the article on their site, but here's the abstract from Oxford Journals:
"Conclusions: Prophylactic mastectomy is associated with a substantial reduction in the incidence of subsequent breast cancer not only in women identified as being at high risk on the basis of a family history of breast cancer but also in known BRCA1 or BRCA2 mutation carriers."
Oh goody again, a bigger longer uncut version of studies on ASCO:
http://jco.ascopubs.org/cgi/content/full/22/6/981
" the body of data on the efficacy of prophylactic mastectomy is derived from a number of approaches and populations and is quite solid. The procedure results in a marked decrease in the risk of breast cancer. "
Interesting also, looks like usually BRCA 1 is triple negative. Were you BRCA 1 or 2?
Last but not least, when I searched for "prophylactic hysterectomy brca" (as before I searched for "prophylactic mastectomy brca") I got nothing from any cancer sources I consider reliable. Could be the way I searched. But what I did get was this:
"
Role of prophylactic hysterectomy in patients at high risk for hereditary cancers
Jeannine A. Villellaa, Madhu Parmara, Kathleen Donohueb, Cathy Faheyc, M. Steven Piverc and Kerry Rodabaugha, ,
aDepartment of Gynecologic Oncology, Buffalo, NY 14263, USA
bDepartment of Health Behavior, Roswell Park Cancer Institute, Buffalo, NY 14263, USA
cGilda Radner Familial Ovarian Cancer Registry, Roswell Park Cancer Institute, Buffalo, NY 14263, US
Received 23 September 2005.
...
Conclusion.The women in our study did not require hysterectomy for prevention of malignancy. We conclude that one should screen for benign gynecological indications for hysterectomy when planning a prophylactic BSO for prevention of ovarian cancer. Other potential risk factors for endometrial cancer, including the role of UPSC in HBOC, remain to be elucidated."
On the Tamoxifen issue...
http://jco.ascopubs.org/cgi/content/full/23/31/7772
"Surgical Management of BRCA1 and BRCA2 Carriers: Bitter Choices Slightly Sweetened"
...."While there is no definitive evidence that tamoxifen chemoprevention works in BRCA1/2 carriers, Metcalfe et al6 found that tamoxifen use was associated with a 40% reduction in the risk of contralateral breast cancer in BRCA carriers with a prior history of breast cancer. "
But the same article has a couple issues, like that the researcher had a conflict of interest with a drug company, the article was about using HRT for patients who did not get have breast cancer but did the preventative surgeries and wanted help with the hot flashes. We all heard about that controversy. It does bring up the part about the increased uterean cancers on Tamoxifen, which on one hand only amounts to 1%, but on the other, again, surgery is a good way to knock that out of the park.
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