BRCA2 recurrance now Dr. want overies removed- why?

hjpz

I was diagnosed with breast cancer (stage 1 - I found it) at age 29 - now at age 41 I have breast cancer in my second breast (I found it AGAIN - stage 1 so far from the films and ultrasound).  I have a VERY strong family history of breast cancer (mother - aunts - cousins) and I am BRAC2 positive so the fact that I have breast cancer again is not a tremendous shock.  I was all mentally prepared for the recommendation for my treatment to include chemo (skipped it the first time and may again - not sure yet) and a bi-lateral masectomy  (which I am willing to do) BUT I was NOT  prepared for them to also advise that they want to remove my ovaries.  I have no family history of ovarian cancer and the BRCA2 gene has a much less chance of getting ovarian cancer than breast so I was thrown for a loop and basically said I was not ready for that.  I understand Dr.'s work on statistics and are there to save lives but people are not statistics and it really upset me that no only do they feel it is fine to suggest I lose my breasts and hair but also my source of estrogen/youth all in one shot.  Anyone have any experience with this?  My opinion is why do something to my body when I am not sure it is necessary (that is why I skipped chemo the first time with stage one and no positive lymph nodes).  I refuse to live my life in fear of statistics that may never be I guess.

graceforme

Hi hjpz- I'm 41 and braca1 positive. I've already had bilateral mx and I know that a hysterectomy, oophorectomy is in my future. It's been very hard for me to accept this but I'm willing to do it for the sake of my young children. I think ovarian cancer risk is higher for braca1. I saw my paternal aunt and two of my cousins survive breast cancer and then years later die of ovarian cancer so I think for me that has been a huge factor in my decision. By no means is it easy but I feel that it is the right one for me.

hjpz

Graceforme sorry about your family history of both cancers - how horrible. My mother passed away from breast cancer and 3 of her sisters are survivors ( one of their daughters passed away from BC) so I know being born into this genetic mutation is a nightmare. The chances of my BRAC causing ovarian cancer are half that of yours. To be honest I now wish I never did the genetic testing because the Doctors all treat me like a walking time bomb. I already had BC when I had the gene testing and only did it for my two sisters to use to compare but they both refuse to get tested! Thanks for sharing your story. I feel better now that I have looked into this more and think the Dr are just assuming the worst to be safe. At this point with more info I am still thinking I will not be doing it now. I already made my body go through medication menopause the last time and that sucked but was reversible

MiniMacsMom

Ovary removal is not just about ovarian cancer. for those of us wit brca 2 who more commonly get hormone positive cancers than brca 1 its about estrogen removal also. dr. Lu the head od the mda obgyn onc dep and the survivorship clinic advised me that we would re approach the ooph discussion in around 10 years when i turn 40. i believe thats the comfortable age for ballancing er loss risk vs cancer risk. it also may be with a reoccurance they are feeling more agressive about your treatment. many non brca pos women get ooph to reduce their bc risk or because they dont want to take tamoxifen but an AI. its a very hard decision to make but ultimately its up to you. ar you comfortable getting ovarian cancer screnings every 6 months as part of the hereditary cancer preventative care? have you talked to a genetic counsellor or a hereditary cancer specialist recently? things are changing all the time. their job is not to judge but to help you come up with the best plan for u based on history, life style and statistics. also brca 2 is a tricky beast. in my family it follows no trending. we have had one pancreatic one possibly ovarian but really unlnown source and me stage three bc at 27. each mutation location of the brca is unique with its own unique statistics for cancer. but its too hard to study and track all those variables especially with some of the data hoarding companies do so we are lumped into brca 1 or 2 instead of my specific brca mutation. my mutation insertion mutation may work in a differnt way than ur deletion mutation or the location early vs late may affect it. at the end of the day we dont know enough about the specific mutations yet and the broad brca statistics are all we have. at 40 you are young and for any of the reasons mentioned the drs feel that an ooph will give you a better shot to hang around.

hjpz

Thanks for your reply!  I 100% get that my BC is fueled my estrogen.  This is why I was going to do the bi-lateral and just be done with it.   I just feel that they are not individualizing my treatment and as you said "lumping me in with the BRAC1 mutation".   If I am already willing to give up the cause of the cancer that runs in my family (breasts) I don't understand why we can't deal with the ovarian cancer with preventative care at first until I am more mentally and physically ready to take it on.  I have read up on ovary removal prior to menopause and it can cause horrible problems (heart disease - memory loss - bone loss).   I had the gene test all the way back in 2004 for gosh sakes and now they bring this up out of the blue without ever doing one ultrasound of my ovaries.   It seems a little overreactive to me.  I would be more than happy to do ultrasounds and take the pill again (or whatever else you can do) until my body starts changing on it's own and then by all means take them out!  I agree that they may be more agressive this time - but going from a lumpectomy to both breasts being removed is aggressive to me!   btw I am 41 but still not ready! Before this diagnosis I was feeling better than I did at 21.   

Mutd

There is increased risk of ovarian cancer in BRCA2+ families even where only breast cancers happened before. This risk is spread over time, so if you choose to wait 5 or 10 years before oophorectomy then you'd be choosing partial protection (not perfect but better than nothing). Also there is a belief that removing only phallopian tubes and leaving ovaries in place (saplingectomy) gives a very good protection. But it is still experimental (awaiting better proof) and today's insurers might not cover saplingectomy. For discussions on tubes-only removal, and for estrogen replacement options, check discussions on FORCE forum, please.

hjpz

Thanks for the info.  I am off to reseach saplingectomy now!  p.s. I get that I am still at an increased risk (stats range from 10-27%) to get ovarian cancer and with those odds I am fine with not removing them right now - especially without a family history.  Odds are just numbers for me to take into consideration and try to make an informed decision about what is best for me.  I got the gene test in 2004 and this is the first time my ovaries were even mentioned! I sincerley wish I was never tested for the gene at this point.  I feel like I am being treated like a number

MiniMacsMom

Hjpz, just for a reference at mda they start high risk oc screenings at 30. i get an internal and external us every 6 months as well as a CA125 test. this is standard for them. mayb call the nci center in your are and see if theywill do he screenings til you are ready... Or better yet go to mda! love the docs in the survivorship/hereditary cancer dept. all this stuff sucks but you have to find the ballance thats most comfortable for you!

hjpz

What is the MDA?? Sorry I am clueless to some things!

hjpz

OMG I just realized I spelled ovaries wrong in the title!  I can't figure out how to change it so just excuse me

I find it crazy that I am 41 and am just now hearing about all of you ladies being screened every 6 months  for OC.   I think I was tested for the ovarian cancer marker by my oncologist for the first 10 years after my original BC and was always normal but considering my breast cancer marker was in the normal range 3 weeks ago I am thinking those markers are not all they are cracked up to be.

MiniMacsMom

Mda is md anderson.... The best cancer hospital in the country... Its in houston. sloan kettering is number two and in nyc. an nci center is any cancer center accredited as a national cancer institutes. they tend to be more up on research and participate in lots of research. :-) not everyones tumor markets are a good barometer of cancer growth but its really all we have. the other thing you can ask for is an ova 1 test its a tumor marker plus other tests together with some calculation thats supposed to be more accurate than the ca 125 alone. that really sux that ur docs have been lax on all this. in general my breast onc pays no attention to the other brca cancer risk. thats why i hit up the hereditary cancer center they pay more attention to ur whole risk!

hjpz

OH MY GOSH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  My brother in law works at Rice University in Houston and he just invited me to come there to stay with him and his wife and get a second opinion at MDA!  How weird is that MinMacsMom??  Now I really want to give it a try *squee*   I think this is destiny! Thanks so much for your input.

MiniMacsMom

Yay! I love Mda. Mostly you will be in the mays clinic building. Its pretty easy to navigate. Depending on ur ins you can get a drs referral or self refer. When you go the first time you register. Its the only time u do. Every time I go now I just go straight to my first appt. No having to show cards or anything each time! Onceyou start the process just pm me for quesquestions . We actually moved there for rads last summer for 7 weeks and are biannual visitors now for. Check ups. Its great that you have a place to stay too!

hjpz

I am super excited.  I checked out their website and they are trying out/using a lot of things not even available here but I have been reading about.  I'll let you know if the plans get settled to go.  Thanks!

Leigh74

Hi

I am also BRCA2. I have not had my ooph yet at 38. I am in treatment for ER+ bc now. I was told that tamoxifen will be as effective as ooph in terms of blocking estrogen for estrogen positive cancers. I have no family history of OC either so I am waiting until between 40-45 to have my ooph or total hysterectomy. My mom had a hysterectomy after her first bc and still got a new primary in her other breast after that and also 5 years of tamoxifen so you never really know for sure!

hjpz

Thank you so much for your info! I have decided to go ahead with the double mastectomy for now and go back on Tamoxifen and just monitor my ovaries with ultrasounds and blood tests. I really think Dr.s just don't know enough about our gene mutation and are trying to eliminate any possibilities but they forget every patient is a person and should be treated individually. I get that they are just don't their jobs but my job as a consumer/patient is to do what is best for me. Just FYI I am 41 and am don't think I would voluntarily undergo a hysterectomy or ovary removal until I get closer to age 50. Estrogen is obviously not great for my breast tissue since I have been estrogen positive both times I have had BC but it still does a lot of great things for your mind and body.