Decisons, Decisons....

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booboo17
booboo17 Member Posts: 8

Hi .. I am 36, diagnosed with DCIS last month.  Had lumpectomy and now discussing treatments.  Talked about radiation and tamoxifen as next steps.  In the meantime decided to have BRCA testing, came back positive for BRCA 1.  Now seems I will be faced with either radiation/tamoxifen or masectomy!  How do you decide which is better?  Anyone in same situation?  DCIS, grade 3, ER+, BRCA1.  Trying to find studies of how women made out doing both and their risks of reoccurrence in years to come?  Very overwhelming :(

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  • bdavis
    bdavis Member Posts: 6,201
    edited November 2011

    BooBoo... I have know many women who never even got cancer but were BRCA positive and had mastectomy and oofrectomy... if it were me, that is what I would do.. I think the odds of recurrance is something like 80%... And for what its worth, I had lumpectomy last year and then chose bilat MX to improve my BRCA NEG  odds... No regrets... better to be proactive then to wait for a more serious cancer to affect you. My 2 cents... Good luck

    PS.. I chose immediate DIEP reconstruction in New Orleans at the Center for Restorative Breast Surgery.. This is all they do and they are the best!!

  • booboo17
    booboo17 Member Posts: 8
    edited November 2011

    Thank you bdavis.  I'm feeling like I need to be proactive and reduce my risks as much as I can.  I just want to do the best for myself regarding the reoccurrence.  I was very lucky this time to find it so early.  And now with the BRCA results seems to be changing everything even more.  I'm glad to hear your bilat MX went well and you are happy with your decision.  I hope you are doing well.  I just joined this site and it's amazing to see how many women are faced with this.   

  • bdavis
    bdavis Member Posts: 6,201
    edited November 2011

    Clearly you need to make the best decision for YOU... I remember when I was wavering between to get an MX or not, and my MO said that had I been BRCA positive, my answer would have been much clearer.. I don't think I know ANY BRCA positive woman who kept her breasts and ovaries after learning their status.

  • bdavis
    bdavis Member Posts: 6,201
    edited November 2011

    In addition, with your diagnosis, I would have the Tamoxifen as well.

  • booboo17
    booboo17 Member Posts: 8
    edited November 2011

    Yes, I have been told that also.  Initially my treatments were going to be lumpectomy, radiation then tamoxifen.  I'm going to meet with my MO tomorrow since he just called me last week with the BRCA result.  I do believe he will recommend the mastectomy and oofrectomy.  I'm wondering if anyone has continued on with the original treatment (radiation and tamoxifen) even after learning they are BRCA positive? 

  • bdavis
    bdavis Member Posts: 6,201
    edited November 2011

    I doubt it.. My original plan was to have lumpectomy, chemo, radiation and tamoxifen... After chemo I chose the mx, but will still be having the tamoxifen.

  • LisaLisaLisa
    LisaLisaLisa Member Posts: 18
    edited November 2011

    Booboo17

    I too was diagnosed with high grade DCIS in July of this year.  My mother had breast cancer when she was 30 so we (my sisters and I) were all very aware of the risk of cancer.  After I was diagnosed, I decided to get the BRCA test and what do you know, it came back positive.  I asked my mother to test as well because truly, there wasn't a high occurance of cancer on her side of the family.  She came back negative.  My father is passed but for sure, we know it came from his side.  I found a lot of cancers on his side of the family after I started digging, including 2 cases of ovarian cancer, 3 cases of breast cancer, 2 cases of testicular cancer, 1 case of stomach cancer and 1 case of kidney cancer.  In the end, I decided to have bilateral mastectomy and oopherectomy.  I had the oopherectomy first and 2 weeks later, had the mastectomy. 

    I know you want to hear the opinion of someone who did not opt for the extreme (or so it might seem).  All I can tell you is that I feel good about my decisions.  It was perhaps harder coming to those decisions than it was actually going through the surgeries.  I feel for you.  I can also tell you this....not everyone who is BRCA positive opts to have their ovaries removed.  Your risks are elevated for ovarian cancer and it is a tough cancer to catch but the real higher risk is breast cancer reoccurance.  If you don't have ovarian cancer in your family, you may consider waiting on making the decision on the ovaries.  For that matter, you can wait to make any decisions and just monitor every six months.  Wait until you are SURE.  I wish you the best and hope that the forum produces some other opinions that will help in your considerations.

  • booboo17
    booboo17 Member Posts: 8
    edited November 2011

    Thank you so much Lisa!  You're right, the decision making is probably harder than the surgeries!  I'm exhausted!  :(  I met with my MO yesterday, first time since getting the result back of BRCA positive.  He did suggest the bilateral mastectomy and also mentioned the removal of ovaries but as you said there is still a little time for that.  I guess you're right, I was looking for some opinions on maybe having the treatments vs the mastectomy.  But all I'm hearing and learning is that the risks are so much higher for reoccurrance.  In the beginning I was happy to hear that I had DCIS and it was contained etc. then hearing BRCA positive changed everything.  It's definitely upsetting to learn all of this and have to make these decisions.  I feel for every woman, whatever their situation is and my prayers are being said.  The forum has definitely helped in reading the real life stories of women facing the same decisions, treatments and feelings.  Thank you so much for your response.

  • bdavis
    bdavis Member Posts: 6,201
    edited November 2011

    BooBoo.. I know its hard to hear time and time again that MX is the best thing for you in addition to Tamoxifen and oofrectomy, but I do think you probably don't need radiation. And after the past year for myself, getting the BMX and reconstruction, it really isn't as bad as you might think... But what would be bad would be to find out you have a progressed disease. I was first diagnosed being told I had a small tumor and no nodes involved, to later find out that my tumor was larger than they thought and one positive node, and that I needed chemo.. After going through that, I would do whatever it takes to NOT go through that again. You are indeed lucky that you only had DCIS and no nodes... Trust me, having the MX is not that bad.. do your homework and go to the right doctor. And YOU WILL BE FINE!!!

  • Miller1353
    Miller1353 Member Posts: 84
    edited November 2011

    Being BRCA1+ was a game changer for me...I went from believing I would have a lumpectomy and radiation to a BMX and hysterectomy. I was 43 at diagnosis. Too young to spend the rest of my life worrying about if and when this would return.  My onco put my odds at recurrence at 67%+ in the cancer side and 40%+ on the non-cancer side. Additionally, she said I had a 40-60% of ovarian cancer. That is one sneaky cancer. It's hard to detect. I was done having children, so I had no problem having a complete hysterectomy. I didn't want an ooph...I knew my odds of endometrial and cervical cancer were elevated, so it made sense to remove it all.

    People say it again and again, but it is a personal decision.  I didn't have angst. Honestly, I was relieved to get the surgeries. Not to be crass, but I didn't want to keep what had the potential to kill me. It's not like I have a 0% chance of recurrence or mets, but it's now approximately 5-10%. If I were still single, considering having more children, or had a lower grade of cancer, I might have looked at it differently. I was er-, but pr+. I take Aromasin daily and will continue for as long as they will let me. 

    It's hard to hear that you are BRCA+. I had no family history. It was stunning. I remember being in shock. My treatment plan changed, as did my view of breast cancer. I can't change my genetics, but I could control my risk. If you have not already, please visit the FORCE (Facing Our Risk of Cancer Empowered) website. It is for BRCA+ people, whether they have cancer or not. There is a wealth of information and support.

    Whatever you decide, know that you can do whatever it takes. I felt much better once my treatment plan was in place. There was so much I could not control, but knowing what I needed to do seemed to center me.

  • booboo17
    booboo17 Member Posts: 8
    edited November 2011

    Thank you so much for sharing your stories with me and posting. 

  • LISAMG
    LISAMG Member Posts: 639
    edited November 2011

    booboo. I would like to make a suggestion to seek a bilateral breast MRI, if u have not had one already. With your high grade DCIS and being newly diagnosed BRCA1, having this diagnostic testing is so important to be sure nothing is going on with the opposite breast prior to surgeries. This is considered standard of [pre-op] care with being high risk and facing surgery. Its also important to know all your options as well. I highly recommend several books that can help u with your decision making. They include " Positive Results" by Joi Morris, a great personal friend, and Dr. Ora Gordon. Other great books include "Previvors" by Dina Roth Port and "Pretty is what Changes" by Jessica Queller. These books are priceless and so informative for every high risk woman having a predisposition to HBOC.

    Seek opinions, do your homework and gather all the facts to make a fully informed decision. I have a significant family history of BC/ OVCA and had a risk reducing nipple sparing mastectomy one year ago with no regrets and my breasts are far better looking than my originals. The relief is immeasurable. I've lost nothing but my risk and have no more worries. Best wishes to you!

  • Snobird
    Snobird Member Posts: 593
    edited November 2011

    Truly, if you can avoid radiation treatment with a MX go for it. I opted for LumpX and rads fist time around and it drained me. The damage to the tissue by rads was terrible even though I didn't have any skin issues at all. It stated to haunt me 2 yrs post rads with frozen shoulder, cording, lots of scar tissue. And on top of all that I had a recurrence at 4 yrs. post surgery. I am not BRCA+ but I opted for BMX/DIEP and couldn't be happier.

  • ThisTooShallPass
    ThisTooShallPass Member Posts: 101
    edited November 2011

    The decision to have bmx (prophylactic) surgery was an easy one for me because my mother had her first mastectomy when she was 31 and most of the women in my family died before the age of 50. Also anytime my mom would get re-occurrence, cancer was stronger and more aggressive.  I truly believe that this was the right decision for me to do the surgery even though I'm only 27 years old I like others mentioned it's a very personal decision and you have to be ready for it. When I was told that I have this gene there was no question in my mind specially after I had my kids because I didn't want my daughter to go through the same thing that I went through when I lost my mom. I think you will come to a decision that will be best for you but sometimes it takes time. Wishing you all the best.

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