Jun 7, 2016 06:22PM Reckless wrote:
I tested Brca2+ prior to the surgery, and this was the reason why I chose bilateral mastectomy. The doctors did not push for it (I consulted in 3 places) but supported my choice.
ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, and mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM)
Posted on: Jun 7, 2016 05:10PM
I was wondering how many women out there had genetic testing done after surgery?
In January it appeared that I had a 1 cm tumor. It was suggested that it was my choice to do a lumpectomy or a mastectomy because they were certain I was early stage. I decided lumpectomy because the cure rate was the same. I ended up having a 4cm tumor and had to undergo two lumpectomies because the margins weren't clear. I also had 2 positive lymph nodes.
I had BRAC testing done when I was half way through chemo. It turns out that I am BRAC 2 positive, now they are saying that I should have a bilateral mastectomy. I'm just curious why the BRAC test wasn't done right away, I think I would have made a different decision about what surgery to have. Has anyone else had this experience?
Posts 1 - 30 (31 total)
Jun 7, 2016 06:22PM Reckless wrote:
I tested Brca2+ prior to the surgery, and this was the reason why I chose bilateral mastectomy. The doctors did not push for it (I consulted in 3 places) but supported my choice.
Jun 7, 2016 07:34PM Mominator wrote:
Dear iluvgsd5, you made the best choice you could with the information you had at that time: at 45, you're still young, and they were certain that you were early stage.
What prompted the genetic testing? Was it your bc diagnosis, or is there a history of breast cancer in your family? Is there a history of other cancers? BRCA increases the risk for breast, ovarian, male breast, prostrate cancers, and melanoma.
Yes, I am surprised that genetic testing wasn't done before your surgeries. Now you're probably wondering if you've done enough.
You have options with reducing your risk.1. increased surveillance alternate mammograms and MRI's at 6 months; 2. chemo-prevention (not the same as chemo-therapy) a drug to prevent cancer, 3. prophylactic surgery.
A bilateral mastectomy is big surgery. I know, I had mine in November. Many women like to keep their breasts if possible.
Good luck, Mominator
Jun 8, 2016 05:47AM iluvgsd5 wrote:
Mominator, the testing was done because I have, on my fathers side, a history of cancer. Aunt, grandma and cousin with breast. My father has bladder and prostrate.
It's frustrating to me that it wasn't done first. I knew what BRAC meant at the time but I also relied on the cancer team to know when to do these kinds of test. I had a difficult recover from the lumpectomy and the thought of another surgery is not very appealing. This is in addition to the hysterectomy I have to get. I'm ok having all these things done if it rids my body of cancer, but I can't help think that I would have made a different choice if I would have known 😔
Jun 8, 2016 06:43AM 3-16-2011 wrote:
I am brca2 positive as well. Back in 2011 when I was first dx my treatment plan kept changing because each test and scan brought new information. My first plan was chemo first then lumpectomy. But I had a breast mri that showed two tumors in my left breast. So I had a unilateral masectomy and then was genetically tested. It was positive and my BS stated she would not have done a bilateral masectomy because it would be too much healing before chemo.
So, I chose a tram flap reconstruction and my right sided masectomy was done at the time of reconstruction. I don't know what you will choose but possibly you could have masectomy and reconstruction done at the same time limiting the amount of surgeries.
I also choose a prophylactic opherectomy because I was premenopausal and brca 2 positive. They would have done this at time of reconstruction but I wanted it sooner. This was an additional surgery for me but the easiest one for me.
I remember how difficult the constant changes were for me. I wish you peace in walking this path. I really leaned on my nurse navigator when things got confusing or overwhelming. She was always available to answer questions. I hope your medical team has a nurse, social worker or care coordinator you can lean on.
Aug 14, 2016 03:17AM LisbethS wrote:
I'm also BRCA2 positive and just found out 4 weeks ago. I don't know why, with your family cancer history, they didn't do a BRCA test right away. You certainly seem to fit the criteria. I pushed for my BRCA test but I assume they would have suggested it anyway. My father had prostate cancer, his sister had breast cancer, and his father had pancreatic cancer.
Maybe they knew they needed to get the tumors out and get you on chemo ASAP and prophylactic surgeries could wait, just a guess.
I was scheduled for a lumpectomy but had to change to uni-mastectomy after finding a second tumor a few days later. Found out the night before my unilateral mastectomy that I was BRCA2 positive. It was too late to change from uni to bilateral mastectomy and keep the surgery date, I could've pushed my surgery date out but my doc was going on vacation the day after my surgery so I chose to get the unilateral so I could get the tumor out ASAP before it spread if it hadn't already and then get a second mastectomy prophylactically later. I knew I was getting a reconstruction later anyway.
I'm also getting my ovaries and fallopian tubes removed. Trying to decide if I should also get my uterus (hysterectomy) removed since the gyn onco surgeon said there wasn't any proof that BRCA2 increases uterine cancer, just ovarian cancer. She suggested hysterectomy along with ovaries and tubes just because, why not since she would already be doing surgery but I know the recovery is longer with the hysterectomy. So can't decide. Need to research more as it was a bit confusing.
But now my oncotype DX test came back high-40, so all my surgeries have to wait for chemo.
In a way, I am glad that I only got the unilateral because I am healing faster and will be ready for chemo sooner which I think is probably the most important thing (but scares me more than surgery). The mastectomy on the other side and the ovary/fallopian tube removal are all prophylactic so I guess it's ok they are being done after chemo. Also its giving me time to say goodby to my existing boob, weird I know, but I found out I had breast cancer and less than three weeks later had my unilateral mastectomy so I wasn't ready for a bilateral mastectomy and it sure has been nice to have one side that doesn't hurt for sleeping. I'm not saying it was right for them to wait so long to do your BRCA test but maybe it helped you get chemo sooner, idk.
Aug 19, 2016 03:50PM ccmarie22 wrote:
Diagnosed Stage III BC at 26 years old. BRCA2+ ER+ PR- HER2-
Opted for bilateral mastectomy. Took Tamoxifen for 3 years... No recurrences.
I am 37 now, and it is time to think about an Oophorectomy. I have 1 child. I haven't had menopause, and I still have regular (heavy) periods. I am not afraid of the surgery, or downtime. I am mainly afraid of the sexual side effects, weight gain, aging, and long term health issues. I don't think I will be able to do Hormone Replacement Therapy.
Has anyone had a prophylactic oophorectomy? If so, please tell me how bad it is after.
Aug 19, 2016 04:09PM LisbethS wrote:
I'm getting a prophylactic salpingo-oophorectomy due to BRCA2+ after I finish my chemo (starting next week for 3 months). I'm 51 but still pre-menopausal. The surgeon also wants me to get a hysterectomy but I see no evidence I should get my uterus removed too. My doc said no hormone replacement due to BRCA2 and ER+ cancer. My biggest worries are the same as yours. Did your doctor say you should get hysterectomy too? I don't know since I haven't been on Tamoxifen yet nor menopause, but I would think having ovaries removed would be a little bit similar to Tamoxifen since they both lower estrogen. Hope someone chimes in who has had an oophorectomy.
Aug 20, 2016 04:44AM Mominator wrote:
LisbethS: in my BRCA2 journey, I've had 4 professionals give me advice. My primary GYN and my Breast Surgeon were both strongly in the "You have BRCA2 mutation; just take everything out" camp. My Genetic Counselor and my Gynecological Oncologist were more scientific: "BRCA2 is NOT associated with increased risk of uterine cancer. You do not need a hysterectomy. Don't have unnecessary surgery." When I told the Gyn Onc about the advice of my primary GYN and BS, he said, "Well, it's summer and as much as I'd love a new car with a convertible roof, I'm not going to make you pay for it. You don't need a hysterectomy."
ccmarie22 and LisbethS: I was 54 and going through, maybe almost done, with menopause when I had my oophorectomy. My last periods were Sept 2013, Dec 2013, Dec 2014, and I had my ooph Nov 2015. I had having hot flashes and already felt a loss of libido for the last few years. Having the ooph didn't seem to change anything for me. I had a friend who had her ooph much younger, and she had hot flashes right away. I think we're all different. Exercise seems to help many folks. Most of us can't have HRT. At the advice of my primary Gyn, I was taking Black Cohash before I found out I was BRCA2 positive. Black Cohash helps a lot with the hot flashes, but because it acts a lot like estrogen (even gave me that last period in Dec 2014), we are NOT allowed to take it. I gave away my Black Cohash to a non-BRCA positive friend.
BTW: I mention oophorectomy, but actually we all are having Salpingo-Oophorectomy. Salpingo means Fallopian tubes. A study of BRCA1 and BRCA2 positive patients showed that BRCA1 ovarian cancers started in their ovaries, but BRCA2 ovarian cancers started in their Fallopian tubes. Ovaries and Fallopian tubes start from the same stem cells.
Hope that helps both of you. Best wishes to you, Mominator
Sep 7, 2016 05:41PM Brca2real wrote:
I has a non cancerous mass that turned into a papilloma very quickly and grew. Them I had a lumpectomy. It was suggested to have the test and I am Brca 2 positive. I now have a mass on the other breast that after 6 months will be Sono. I feel the same... Why after.. Cosideting this mutation can't suppress tumors I wish I would have known. I now struggle with what to do.. It seems a ovarian removal is a must. I am 50. Both mom and grand mom had breast cancer...with a hose of other maternal women in my famil
Sep 7, 2016 05:55PM Brca2real wrote:
I am now 50. I have a high concentration of breast cancer (mom, grand mom), pancreati(paternal grandmom) and ovarian cancer mom side cousin and a host of maternal relatives... I do not have cancer. I had a lumpectomy in June and tested Brca 2 positive last month. The removed tumor started as a mass then a tumor grew pretty quickly in 6 mths.. I have another developing that's being monitored. I am now in the decision process to have everything removed or continue monitoring for threats. I could really use some feedback.
Sep 7, 2016 06:55PM Moderators wrote:
We want to welcome to our community here at BCO. We know this is a difficult decision to make, and it also a very personal one. Some women feel comfortable with continued monitoring, while others would rather move forward with prophylactic surgeries. Have you spoken to your doctors about the pros and cons of each option?
We have some info on our main site about BRCA and what testing positive can mean: http://www.breastcancer.org/symptoms/testing/genet.... We hope this is helpful to you, and we wish you luck in whichever decision you make!
Oct 5, 2016 01:44PM coby59 wrote:
I too have been diagnosed with the BRCA 2 gene.
I am 56 and elected to have a full (Hysterectomy, Ovaries, Fallopian tubes & Cervix) removed in April. My surgeon is also advising me to have a prophylactic mastectomy because of my high risk.
My sister passed away at age 54 (Ovarian cancer). My mother had her breast removed and another sister has had (2 breast cancers) age 36 & 47.
I am scared of the heavy surgery, but do know that this is my life at stake.
Any information or anyone who has the same story. I would appreciate all comments.
Oct 7, 2016 06:14AM Mominator wrote:
Hello coby59, and Welcome to the bco community
I have a similar history, which is listed in my profile.
In my BRCA2 journey, I've had 4 professionals give me advice. My primary GYN and my Breast Surgeon were both strongly in the "You have BRCA2 mutation; just take everything out" camp. My Genetic Counselor and my Gynecological Oncologist were more scientific: "BRCA2 is NOT associated with increased risk of uterine cancer. You do not need a hysterectomy. Don't have unnecessary surgery." When I told the Gynecological Oncologist about the advice of my primary GYN and BS, he said, "Well, it's summer and as much as I'd love a new car with a convertible roof, I'm not going to make you pay for it. You don't need a hysterectomy."
Of all of those professionals, the Gynecological Oncologist would know the most about the risks of Gynecological cancers. I followed his advice and just had my ovaries and Fallopian tubes removed. He reminded me that uterine cancer's warning signs include vaginal bleeding, which is easy enough to detect. Screening for cervical cancer includes your regular Pap smears.
My advice to you is to have just your ovaries and Fallopian tubes removed to reduce your risk of ovarian cancer. This is called a BSO = Bilateral Salpingo-Oophorectomy. Removing just ovaries and Fallopian tubes is a much easier surgery on your body, and can be done laparoscopically. You do not need to have your uterus or cervix removed. There is no medical justification to "just take it all out," which is what many people may try to push on you. Laparoscopic surgery is very easy. You can have same day surgery. Be sure to have a Gynecological Oncologist perform this part of the surgery. They are trained in removing the ovaries and Fallopian tubes, and flushing the peritoneal cavity to catch any stray cells, which is all part of the prevention.
On to your breasts: BRCA2 women have a 60 to 87% risk of breast cancer. A bilateral mastectomy to reduce your risk of breast cancer down about 4%, which is even lower than the 12% for the general population all women. Since my mother had two cancers already (DCIS at age 62 and ILC stage IIIA(+?) at age 79), I considered my personal risk for breast cancer was very high. Did I want to have high screening and possible preventative medication, and hope for the best? Did I want to have surgery now before a cancer diagnosis? I decided to have preventative surgery. Be sure to have a Breast Surgeon perform this part of the surgery.
Yes, the prophylactic mastectomy will be heavy surgery. You will get through it. You can choose whether or not to have reconstruction, either now, later, or never. If you want reconstruction, be sure to have a Plastic Surgeon perform this part of the surgery.
I had my mastectomy with tissue expanders on 11/11/15, and my exchange to implants on 1/18/16. It was major surgery, but I'm doing great now. I have peace of mind. I also had my BSO at the same time, that is, all three parts were done as one surgery. The surgical coordinators for the three surgeons (Gynecological Oncologist, Breast Surgeon, and Plastic Surgeon) worked together to schedule this. All three doctors are part of the same hospital system in my area.
My questions for you: do you have just a general surgeon, or have you consulted a Breast Specialist and a Gynecological Oncology specialist? Why is your surgery scheduled so far in the future?
All my best wishes for you. Please ask any questions. I've done a lot of research on this.
Oct 8, 2016 09:41PM RAS0817 wrote:
Hello ladies! I found out in July that I am brca2 positive. I'm trying to get all of my surgeries done at the same time. Anyone ofyou go to Penn Medicine in Philly? If so can you recommend a plastic surgeon? I'm having my bso done by Dr. Tanyi and Dr. Sataloff will be doing my mastectomy. Any information would be greatly appreciated. Thanks in advance.
Oct 9, 2016 04:02AM Mominator wrote:
Hello RAS0817, and Welcome to the bco community.
Good for you, getting all your surgeries done at the same time. That is what I did, and it worked out well for me.
I don't know anyone over in Pennsylvania. Your Breast Surgeon, Dr. Sataloff, probably is your best resource, having worked together with many plastic surgeons on previous mastectomies and reconstructions. Dr. Sataloff may pref some PSs over others.
Best wishes on your surgery and recovery.
Oct 15, 2016 07:15AM chickdudefood wrote:
I had already had a lumpectomy and node removal (October 4) and the same day found out that I'm BRCA 2 positive. I am going ahead with chemo and radiation beginning in a week, and will decide about other surgeries after this part is over. My question isn't about me, but about my daughter, just turned 25. Any advice on how to tell her about this (she lives in another city and will be visiting me next week, and I want to tell her in person.) I have a genetics counselor and other support lined up for her here but I would love to hear how others handled a similar situation. She will want the test, I know that, and we of course are hoping that she didn't inherit, but I know her mind will race to the worst possible outcome. I'm 64, she was a late baby, so I'm fine with losing any parts I don't need anymore but this is devastating news to someone just starting her adult life. Thanks for any thoughts you might have.
Oct 31, 2016 12:13AM LisbethS wrote:
I wish I had some good advice. My kids are 13 and 11 and I don't have a clue how I am going to tell them. Can't even imagine. I'm still in denial about the 50/50 chance my kids have it. The stress of waiting for the test was so awful, can't imagine when it's waiting for the results for your child. Sometimes I just want to secretly test my kids so I can get it over with. Sorry, I am no help at all--just doom and gloom. Let me know how it goes. We have a Starting chemo in September support group under chemo that has lots of good info, if you are interested. There's probably one for October too. Nobody in my group is BRCA positive though
Feb 1, 2017 11:14AM eemaxx wrote:
I am also BRCA2 positive. I am currently 42 years old. I had a yearly mammogram back in 2015 and genetic testing was suggested because my mother had stage IV ovarian cancer and passed away in 2002 at the age of 52. She only lived 2 years after diagnosis and in all my research I knew that ovarian cancer was the "silent killer". Having my own family now, I did NOT want to go through what she went through so I opted for doing the genetic testing. After the shock of being BRCA2+ (and another "unknown significance" mutation) I opted for a prophylactic bilateral salpingo oophorectomy. There just aren't any good tests for ovarian cancer, so that's where I wanted to start. All went well and no signs of cancer! I had surgery on a Wednesday and by the weekend I was up and about. Back on the treadmill in 2 weeks.
However....fast forward to November 2016 and my mammogram showed some more calcifications that weren't there last time. The biopsy showed that yes, it was cancer. I know that breast cancer is supposed to be "very treatable" but I was not going to mess around (especially with the BRCA2+ knowledge) and opted for the BMX with reconstruction, even though the cancer was only in one breast (that was 12/27/16). I am very fortunate to not need chemo or radiation (Femara for 10 years though). If you are BRCA+, my suggestion is to take control and ask lots of questions. At first my GYN didn't seem to think the BSO was necessary, but I pushed for it and he actually commended me for my decision. I've come to discover that asking the doctor, "If it was YOUR wife, what would you want her to do?" Then they can give an honest answer because they're not telling YOU what to do.
Mar 17, 2017 04:00AM Cwhitney wrote:
Eemax, your story is similar to mine. I was 42 when they found suspicious calcifications in my mammogram that turned out to be stage 1 breast cancer. My mom died of a rare lung cancer at 49 and I had a third cousin who had breast cancer at 35. Unfortunately, I was unaware that she was brca2 until it was too late so I was never tested until after my BMX. After the shock of having the mutation, I felt like i had the power of knowledge on my hands and had a full hysterectomy (cervix, ovaries, uterus, tubes) and thankfully, no sign of cancer! My gyn/oncologist was very aggressive and did exactly what I asked although there is no correlation with cervix and uterine cancer with brca2. I just didn't want to worry about it since I was done with having kids. I had already had a BMX as soon as I found out I had breast cancer. My breast surgeon said I was a great candidate for a lumpectomy since my cancer was so small but I pushed for the BMX. Thank god I did. They found dcis in both breasts that was never detected in my mammogram. Since then, I have met with dermatologists,a pancreatic specialist and genetic counselors to review my risk for other cancers and the proper screening I need being BRCA2. I totally agree with you are that you are the greatest advocate for you health!
Oct 6, 2017 08:40AM Capecodgirl wrote:
I have tested positive for the BRCA2 gene mutation. My sister also tested positive. Another sister passed away from rectal cancer, with the same mutation found in the pathology of her tumor.
I have decided not to have a prophylactic mastectomy, just do alternating MRI and Diagnostic Mammagram every 6 months. I feel I will be able to catch a recurrence or new tumor at an early stage this way. It has been recommended to me by a cancer genetic prevention doctor at Dana Farber Cancer Institute in Boston that I have my ovaries and fallopian tubes removed for risk reduction purposes. I really do not want any surgery, and feel that I have a 70 - 80% chance that I won't get ovarian cancer.
If there is anyone who is willing to share their thoughts/feeling regarding this, and /or how they made their decisions for or against surgery, I would appreciate it.
Thanks in advance.
Oct 13, 2017 08:27PM AnneSanFran wrote:
I'm also BRCA 2 positive and was tested in 2010. This was after my cousin got stage 3 ovarian cancer. Her late mother and my late mother both died of breast cancer many years. I did get the BSO in 2010 at age 47. I was still pre-menopausal and had completed my family. I had a quick recovery and no second thoughts about this at all - my cousin's experience really scared me.
My MD urged me to get get a PMX, but I declined, and have been pretty vigilant about mammograms and MRIs.
I hate the MRIs, but I don't dwell on breast cancer. I've been comfortable with this until now. I just got dx with DCIS and am thinking about a BMX. My husband is really worried that I will predecease him and very much wants me to to do this.
What I do know is that every decision path is deeply individual and that we look at options through the lens of our family experience.
How are you doing with your decisions?
Oct 13, 2017 10:36PM Moderators wrote:
Welcome to BCO! Thank you for sharing your story. We know surgical and treatment decisions can be difficult, but we hope you have the support you need to make the best decision for you and your family. We look forward to seeing you on the baords!
Oct 14, 2017 05:46AM Cwhitney wrote:
Capecodgirl, I had stage 1 breast cancer at age 42 after my routine mammogram and found out I was brca2 a few months later. My second cousin had stage 3 bc at 38 and thankfully is a 7 year survivor. Breast cancer or ovarian cancer does not run in my family but other cancers do like lung and esophagus cancer. I had a double mastectomy immediately after finding the 6mm tumor. This is before my results came back. My young age and the fact that I have three young kids made that decision. Three months later, I had a full hysterectomy. My gynecological oncologist scared me with the fact that there is no exact medical screening for ovarian cancer and that my chances were so high, especially because I am a breast cancer survivor. She even warned me that they could find an occult cancer in my fallopian tubes (which ovarian cancer usually starts) and that brca2 patients need a special biopsy performed during the operation to find cancer cells. Yes, she terrified me. I elected to have everything taken out (cervix, uterus etc.) because my other cousin had uterine cancer and I did not know if that runs in my family too. My surgery was a success and no cancer was found! The recovery was longer then just getting my ovaries out but after 6 months, I feel close to normal. I do not regret my decision. It gave me peace and control that I did not have when I was diagnosed with bc. If I would have known I was brca2 positive years ago, I would have had everything done to avoid the bc diagnosis. My mom died of lung cancer at a young age and cancer has always lurked in the back of my head. The power of knowledge of your risk is on your side. If you do decide to have the surgery, it is doable and your body will find its new normal. Please PM me if you have any questions or need advice.
Dec 24, 2017 02:13PM Capecodgirl wrote:
Hi AnneSanFran and Cwhitney-
While I really did not want to move forward with the Bso, on the advice of my surgical oncologist and MO I decided to go ahead with it. Surgery was mid November. Everything went well, had no pain or other post surgical issues. There was very little discomfort. I also have a lot of other cancers in my family, so feel that now I can at least relax knowing ovarian cancer is not in my future.
Thank you both for your informative and well thought out replies-- I appreciate your perspective.
Anne- good luck with the decision making on the bmx. Not an easy decision to make for sure.
Dec 27, 2017 05:39AM Cwhitney wrote:
Hi Barbara. I'm glad to hear you went through with the surgery. It is a hard decision but a wise one. Hopefully, it will just be a bump in the road in this journey of life. Take care!
Feb 28, 2018 02:03PM star2017 wrote:
Like another poster, my genetic testing was done before surgery, but I got the results too late to make changes, so I had a unilateral mastectomy. As I approach reconstruction, I need to decide if I should do the prophylactic mastectomy. I am also BRCA2+.
My feeling is that I am okay with close monitoring and surgery later as needed, but the idea of going through chemo again. I just would rather not. Ihaven't made my decision yet though.
Feb 28, 2018 03:12PM Capecodgirl wrote:
Star2017- I was offered the prophylactic mastectomy or every 6 months screening (alternating MRI and diagnostic mammogram). Doctors told me if I get a recurrence they would be able to treat it again. I chose the screening. I did not have chemo though, so don’t know how that would influence my decision.
I do worry about a recurrence - don’t we all. I also wonder if the chances of recurrence or potentially a new primary are greater for us because of the Brca2. I hope I made the right choice
Good luck with making your decision.
Jul 8, 2019 06:59AM kris7 wrote:
I thought i can kind of forget this whole journey which i left behind a year ago when i was diagonsed with HER2++ BC with 4 tumors in right breast. Had a lympectomy + radiation and really thought I am all done.
Asked for the genetic test just bc it was the possibie and i have a daughter. No previous BC in the family.
Doctor even wrote that taking into account my family history there is just 1% chance that i will test positive for BRCA genes.
Well.. i did. BRCA 2 gene mutation was found and the only doctor i have talked with so far strongly recommended double mastectomy, so i have many appointments booked now in the near future to discuss this operation with plastic surgeon and oncologist.
Anyway, i think i would not go for it if i would not have had the BC already, now knowing all the risks i think the double mastectomy would be a wise decision... But still really shocked and drained by all this information :(