Positive BRCA result

Laura25

Hi I received a positive result for BRCA 1 gene yesterday and because of family history of both breast and ovarian cancer I have decided to have preventative surgery.

My genetisist told me she would refer me to the relevant consultants but didnt really have any further information.

I was just wondering if anyone had had the preventative surgery and if so, how long after your test results did you have it done?

Not really sure what will happen next and anyone with any advice would be much appreciated.

Moderators

Hi Laura-

We want to welcome you to BCO! We understand and support your decision, although we know how hard it must've been to make it. You might want to check out our forum on Positive Genetic Results, lots of great info their about preventative and prophylactic measures some of our other members have taken: https://community.breastcancer.org/forum/112.

We wish you luck!

The Mods

BayouBabe

Laura - be sure to check out the FORCE website, www.facingourrisk.org, for more information on genetic cancers. Much will depend on your age and family history. Sorry you find yourself seeking this information; wishing you peace of mind in the days ahead

mustlovepoodles

Im not BRCA positive, but I have PALB2 and Chek2 mutations. My genetics counselor estimated my risk at >45%. My oncologist is the one who really pushed preventative surgeries, even though I had already had the lumpectomy and chemo. She told me that I could look forward to about 25 years of active surveillance, with multiple biopsies likely. Oh geez. She also recommended a total hyst because of a strong family history of uterine and ovarian cancer. So, I've had both the hyst and a BMX.

Laura25

Thank you. I will check that out.

Laura25

I am 35 and have a 3 year old and a 1 year old. I was told I have an 80% chance of breast cancer and 30% ovarian. My dads 3 sisters have had cancer. One had her breast off at 33, one died at 48 and another is currently battling breast and ovarian which started at 42. So with family history and my children to think of I have opted for risk reducing surgery.

mustlovepoodles

I think you are a wise woman. This is a difficult decision, I know. Your children can live without your breasts and ovaries. They can't live without YOU.

ladyboss1997

I found out I was BRCA 1 after having a lumpectomy, chemo, and radiation (finished November 2011). My oncologist encouraged the mastectomy immediately, but I was tired from treatment. I did agree to a full hysterectomy/oophorectomy 6 months after I finished treatment (April 2012). I opted for surveillance on the breasts until November 2015. It was quite stressful. Finally my oncologist had a heart to heart with me. Her biggest fear was that I was going to have a recurrence, and it was going to come back as triple negative.

I had the double mastectomy 10 months ago (4 years, 9 months after original diagnosis). I couldn't be more happy with my decision. A great weight was lifted off my shoulders. I did a DIEP flap, recovery was not as bad as I anticipated, and I look great.

Laura25

Thank you so much for the encouragement. I'm so worried that the decision I was making was the wrong one. But I don't think I could walk around like a ticking time bomb. They can tqke whatever they want as long as I see my boys grow up. My husband keeps reassuring me that nothing will change in his eyes but I'm terrified my body will reject my reconstruction like my aunt's did.

BayouBabe

Since you don't currently have cancer, you have some time on your side. Take the time to research methods, find a surgeon you are totally happy with, and who others have been happy with. Remember they work for you. Unfortunately, there are good surgeons and bad ones. Do your research. Knowledge is power!

Laura25

I live in the UK so will be having it done on the NHS. The good thing is its free but they get to decide who does it. The hospital closest to me will have a consultant who I'll be referred to.

Suezie23

Hi Laura25!

Last August, I tested BRCA2 positive. No strong family history but one case of male breast cancer on my Dads side. Ever since then, I have been on a roller coaster ride of emotions. First, I was mad at myself for having had the test done. Then, after meeting with a Breast Surgeon, I was glad I got tested and decidet to just do regular check ups for now and get a Mastectomy when Im older. ( I am 30) I had a mammogram and MRI done, all came back "normal" . Then everything changed when I had a consultation with an Oncologist. She didnt "urge" me or even advise me to get the mastectomy done rather sooner than later, but she made me realize that breast cancer doesnt care weather you are in your early 30s, 40's or 70's. So I then decided to get a mastectomy sooner than I originally planned. As in, sometime this year. I met with a PS and felt pretty confident but today I am questioning everything. Tomorrow I might be back on board again... It is such a hard decision to make when your breast are healthy at the moment. But then I read some of the stories of the brave ladies on here and all the treatments and surgeried they had to go through and I think to myself, I dont want to have to go through that!

So for now, I will continue to do some more thinking and maybe go back to ask more questions.

I hope you will find your path and dont have to go through the emotional roller coaster that I have found myself on

mustlovepoodles

Suezie, I think it's a really hard decision, no matter what your age. Of course, the decision was pretty well forced on me--I already had breast cancer when we found out that I have PALB2 and Chek2 mutations, both of which cause breast cancer and other cancers. My 23yo daughter has also been diagnosed with both mutations and her estimated lifetime risk of breast cancer stands at 58%+. We are both understandably devastated, but I take comfort in the knowledge that she will have better surveillance and better opportunities for prevention than I had. Does it make it any better? not really. At the moment, she feels doomed. But I think in time she will come to appreciate the so-called "gift" of knowledge. If, by having a double mastectomy, taking anti-hormonals, having her ovaries removed, all at a later date, IF it means that she has a longer and cancer-free life, then it will all be worth it, IMO.

I wish you the best as you wrestle with these decisions. I know it isn't easy.

lintrollerderby

I hate to see people posting with this result. There are several of us here on BCO who either have BRCA mutations or a mutation of one of the other genes associated with increased breast and ovarian cancer risk. I found out I have a BRCA1 mutation after I was treated for Triple Negative breast cancer at age 34. I was the only person I knew of in my family to have breast cancer, but it turns out that my dad was the mutation carrier and he died of pancreatic cancer which is also a BRCA-associated cancer. As was mentioned above, definitely check out FORCE (facingourrisk.org). My daughter tested after I was found to have a deleterious BRCA mutation and she is also positive. She had a PBMX with recon at age 20. This is a life-changing diagnosis no matter what your age is.

Best of luck.

Laura25

Thanks everyone for your replies. I feel like a walking time bomb at the minute and really don't think I could live like that. It just couldnt have come at a worse time. Im an accountant and January is the deadline for tax return submissions and I'm so busy at work with alot of deadlines and my concentration has gone to pot. I should be thinkin about accounts but my mind keeps wandering. Part of me wishes I hadnt found out til February.

natei4143

To everyone on here... I appreciate your questions & responses. I am constantly looking for guidance and experiences with real people.

I tested positive for BRCA1 Jan 2015. Have had ultrasounds, mammograms, MRI, biopsy and more since then. I met with a great oncologist who specializes in genetic counseling and she referred me to a breast surgeon and plastic surgeon. I thought for sure I would schedule the PBMX and full hysterectomy by Jan 2017 but the time is here and I'm still undecided. I feel like Suezie23 & Laura25, it's so much to consider when you're not actually sick but you feel like a ticking time bomb. It's also not a great time at work for me to be off, and I want to schedule it all in the same calendar year for insurance purposes and schedule it early so I still have my summer & fall to travel and wear a swimsuit; which sounds dumb when you say it out loud. And the dumbest thing yet, I smoke and I have to quit before I'm able to have any surgery, which should be a good thing but it's something that is really hard to give up and until I do, I can't get anything scheduled.

With having an entire year to think about this, I just really thought I would decide by now; but I can't seem to. And since I'm not sick, no one will make the decision for me, I always get "it's completely up to you" from everyone. I'm 33 yo and some days I think I can wait, that I'm still young, but like Suezie23 said, cancer doesn't care how old you are. My mother was diagnosed at 44 with colon cancer, 46 with ovarian cancer, died at 56. My aunt has BC, my grandmother died of pancreatic. But my other aunt is BRCA1 positive and she is 55 and has never had cancer...so I hope I'll just be like her I wish someone could just tell me what to do.

I'm also very worried about the side effects of throwing myself into menopause. I can take HRT if I have the PBMX but even then, are the HRT going to be enough so that I'm not miserable at 33 yo and in menopause? Will I have lasting phantom pain in my breasts or arms? So much to consider...

Susie02

Hello,

I respect each person's feelings and opinions. I tested BRCA 2 two years ago. My children were 17 and 11. My doctor suggested the first thing I should do to cut my risk of cancer would be a full hysterectomy. February of 2015, I had that done and have never regretted it. My hormones were already terrible - without any has been easy for me. After recovering fully from the hysterectomy, I began to research surgeons for a prophylactic double mastectomy. I also felt like a time bomb. I had always had clear mammograms and had a breast MRI that showed nothing. I was scheduled for a double mastectomy in January of 2016. "Life" caused me to cancel this surgery and reschedule for February. I was going to postpone the surgery further, but 2 of my wonderful doctors urged me to go ahead and do it (explaining how stress that I was enduring could actually be hurtful to my health). I had my prophylactic mastectomy Feb. 2016. It was a big surprise when my pathology report from surgery came back showing I had DCIS. I am convinced that if I ha delayed my surgery again, I would be undergoing chemo. I am SO thankful for the knowledge about these genetic mutations. Best wishes to you!

Mominator

Hello Laura25, Suezie23, and natei4143.

You are NOT a walking time bombs!! You have been given some information, and now you need to decide what to do.

I would suggest learning more, from a genetics counselor, FORCE, PROMPT, NCCN, and other sources.

BTW, both BRCA1 & 2 genes are actually tumor suppression genes. We all have these genes. Some of us have mutations on these genes. These mutations cause the genes to work differently. Some mutations have been associated with cancer, some we don't know yet. I have a BRCA2 deleterious mutation and a STK-11 VUS - Variation of Unknown Significance.

Cancers associated with the BRCA gene deleterious mutations are:
BRCA1: Breast, ovarian, male breast, pancreas, and prostrate. (sorry I don't have the percentages for BRCA1 handy)
BRCA2: Breast age 50, up to 28%, age 70, up to 84%; ovarian 27%, male breast 6.8%, pancreas 7%, prostrate 20%, and melanoma elevated risk.
Compare these figures with
General population: Breast age 50, 1.9%, age 70, 7.3%; ovarian 0.7%, male breast less than 0.1, pancreas 1%, prostrate 8.2%, and melanoma 1.6%. (from Myriad My Risk)

Please note that neither BRCA1 nor 2 are associated with uterine cancer. If you want prophylactic surgery, you do not need a full hysterectomy. You do not need to "have it all" out. However, you do need to remove both the ovaries and the Fallopian tubes. The Fallopian tubes tissue is similar to the ovaries. In one study, approximately half of the ovarian cancers started in the Fallopian tubes. The surgery is called BSO = Bilateral Salpingo - Oophorectomy.

People with BRCA1 and/or 2 mutations have HBOC = Hereditary Breast/Ovarian Cancer Syndrome

Although BRCA 1 and 2 are similar, there are some differences: (from Wikipedia)

"BRCA-related breast cancer appears at an earlier age than sporadic breast cancer. It has been asserted that BRCA-related breast cancer is more aggressive than normal breast cancer, however most studies in specific populations suggest little or no difference in survival rates despite seemingly worse prognostic factors.

• BRCA1 is associated with triple-negative breast cancer, which does not respond to hormonal treatments and cannot be usefully treated with some drugs, such as trastuzumab. Breast cancer often appears about two decades earlier than normal.
• BRCA2 is associated primarily with post-menopausal breast cancer, although the risk of pre-menopausal breast cancer is significant. It is typically highly responsive to hormonal treatments.

BRCA-related ovarian and Fallopian tube cancer is more treatable than average because it is unusually susceptible to platinum-based chemotherapy like cisplatin. BRCA1-related ovarian cancer appears at younger ages, but the risk for women with BRCA2 climbs markedly at or shortly after menopause."

My mother is BRCA2 positive. Her first cancer was DCIS at age 62, her second was ILC stage IIIA at age 79. Both of her cancers were post-menopausal. She was 17 years cancer free between her breast cancer diagnosis, and the cancers were different (duct, lobe) and different breasts (R, L).

My Grandmother died of ovarian cancer at age 48, right at menopause. My grandmother was an only child. My aunts seem to be fine, and they have only boys. My sister is BRCA2 negative.

Currently, there are three treatments for HBOC: 1. increased surveillance (alternating mammograms and breast MRIs every 6 months), 2. chemo-prevention (taking a medication that suppresses estrogen), and 3. prophylactic mastectomy and Salpingo - Oophorectomy.

So Laura25, Suezie23, and natei4143, take some time to research and then decide. Since Laura25 and natei4145 are BRCA1, you may wish to do the prophylactic surgery sooner, since BRCA1 tends to appear about two decades earlier than the general population (around age 50). Suezie23, with BRCA2 you probably want to do the surgery at least before menopause, since that's when BRCA2 tends to appear.

In other words, yes, you all have a high risk of breast cancer and ovarian cancer, but cancer isn't going to get you in the next several months. You all have enough time to research and decide what to do.

lintrollerderby: your daughter had the PBMX. Is she having regular screenings for ovarian cancer?

Another good source is Dr. Susan Love's Breast Book. She mentions that there are many factors that determine if cancer develops, and we don't know all of them. Genetics, nutrition, and environmental causes are some of them.

My best wishes to all of you. I'll be happy to answer any questions you have.

Mominator

BayouBabe

Newer research IS showing a connection to BRCA1 and uterine cancer!

www.medscape.com

BRCA1 Linked to Higher Risk for Aggressive Uterine Cancer

Roxanne Nelson

March 25, 2014

TAMPA, Florida — Women with BRCA1 mutations could be at increased risk of developing rare types of aggressive uterine cancer, in addition to their already well-known increased risk for breast and ovarian cancer, a new study shows.

Patients who plan to undergo a prophylactic salpingo-oophorectomy to avoid ovarian cancer should discuss the potential advantages and disadvantages of having a hysterectomy during the same procedure, according to data presented here at the Society of Gynecologic Oncology 45th Annual Meeting on Women's Cancer.

Researchers followed 525 women for an average of 6 years. All had a BRCA1 or BRCA2 mutation and had undergone risk-reducing salpingo-oophorectomy (RRSO). During follow-up, 4 uterine cancers were diagnosed — all in women with a BRCA1 mutation.

None of the women with a BRCA2 mutation developed uterine cancer.

There were also no cases of low-risk disease (although 1.95 cases would be expected; P = .14). All 4 uterine cancers were high risk (1 serous, 1 high-grade serous with undifferentiated components, 1 carcinosarcoma, 1 leiomyosarcoma).

"Up to this time, we have thought it reasonable, but not required, to remove the uterus," said senior author Noah D. Kauff, MD, director of ovarian cancer screening and prevention for the gynecology service at Memorial Sloan-Kettering Cancer Center in New York City. "But it appears that women with BRCA1 mutations may have an increased incidence of high-risk uterine cancer after risk-reducing salpingo-oophorectomy that approaches 2.1% over 10 years," or an increase that is approximately 26-fold higher than in the general population.

In this group, 2.2 uterine cancers would be expected, but instead there were 4.0, which is a doubling of the risk. "This was slightly higher when compared with the general population, but it was not statistically significant," Dr. Kauff reported.

Dr. Kauff emphasized that it is too early to suggest any changes to current practice. "Given the study limitations, these data should be considered preliminary," he said. "They require confirmation before any changes in clinical recommendations can be made."

RRSO is associated with a decrease in risk for ovarian cancer of about 80% to 90% in women harboring BRCA mutations, and a decrease in risk for breast cancer of 40% to 70%. The effect of concomitant hysterectomy has not been established.

Hysterectomy has its advantages and disadvantages, Dr. Kauff explained. "It ensures complete removal of the fallopian tubes and can simplify hormone replacement therapy. It also eliminates a baseline risk of uterine cancer."

On the downside, there is a higher risk for complications, higher cost, and longer surgical time. There have been no reported cases of cancer in the cornual portion of the fallopian tube after RRSO, he noted.

High-Risk Disease With BRCA1 Mutations

Dr. Kauff and his colleagues prospectively analyzed the risk for uterine cancer after RRSO.

Of the 525 women evaluated, 296 (56%) had a BRCA1 mutation, 226 (43%) had a BRCA2 mutation, and 3 (0.6%) had both mutations. All had undergone RRSO but had an intact uterus. The women were followed with an annual questionnaire and medical record review. The researchers used age- and race-specific SEER data to determine the expected cancer incidence, and adjusted it for the prevalence of hysterectomy.

Uterine cancer was categorized as low risk (endometrioid, mucinous, adenocarcinoma not otherwise specified) or high risk (serous, clear cell, sarcoma).

The expected number of high-risk cases was 0.28. "Instead, it was 4, and that was highly statistically significant," Dr. Kauff said. They occurred 1.4 to 12.9 years after surgery.

One of the women had no history of breast cancer; the number expected would be 0.06 (P = .06). Three of the women had a history of breast cancer; the number expected would be 0.22 (P = .001).

The researchers also looked at previous tamoxifen use, which is associated with an increased risk for endometrial cancer and endometrial changes.

Two of the women with uterine cancer had previously used tamoxifen (expected, 0.092; P = .004), and 2 had not (expected, 0.184; P = .015). "Women exposed to tamoxifen had a 22% increased risk," said Dr. Kauff.

Table. Characteristics of the 4 Women With Uterine Cancer

Characteristic	Patient A	Patient B	Patient C	Patient D
Age at RRSO	43.8	59.5	40.5	54.4
History of breast cancer	no	yes	yes	yes
Previous tamoxifen use	no	no	yes	yes
Uterine cancer histology	Carcinosarcoma	Leiomyosarcoma	High-grade serous	Serous
FIGO stage	ll	llB	lA	lA
Time from RRSO to diagnosis (yr)	7.4	1.4	12.9	7.2

Routine Hysterectomy Not Recommended Yet

This is "definitely something that should be discussed with patients considering RRSO," said Stacey N. Akers, MD, from the Department of Gynecologic Oncology at Roswell Park Cancer Institute in Buffalo, New York. However, "we need further studies to determine risks so that we can counsel patients appropriately."

The women in this study who developed endometrial cancer had type 2 endometrial cancers, which are more aggressive than type 1 endometrial cancers, she pointed out. "Women with known BRCA1/2 mutations who opt for uterine preservation need to be aware of this," she told Medscape Medical News. They should "be sure report any signs of bleeding to their care team."

This "is a good study," noted Steven Narod, MD, director of the familial breast cancer research unit at Women's College Research Institute in Toronto. "The 4 cancers seen are interesting, but it is a small sample and is insufficient to guide practice," he said.

However, several previous studies have suggested that tamoxifen causes these serous endometrial cancers.

In fact, in a study 10 times larger than this one, Dr. Narod and his colleagues followed 4456 women with a BRCA1 or a BRCA2 mutation (Gynecol Oncol. 2013;130:127-131). They found that the risk for endometrial cancer was similar in women with a BRCA1 or BRCA2 mutation and in those in the general population. There was a significant increase in women who had breast cancer, but this was restricted to those who had used tamoxifen.

Dr. Narod agrees that a hysterectomy should not routinely be recommended as a part of prophylactic surgery for BRCA1 and BRCA2 mutation carriers. "However, women should be made aware that they face a non-negligible risk of cervical and endometrial cancer, and that this can be eliminated through hysterectomy," he said.

Society of Gynecologic Oncology (SGO) 45th Annual Meeting on Women's Cancer. Presented March 24, 2014.

Medscape Medical News © 2014 WebMD, LLC

Send comments and news tips to news@medscape.net.

Cite this article: BRCA1 Linked to Higher Risk for Aggressive Uterine Cancer. Medscape. Mar 25, 2014.

BayouBabe

Sorry the link does not take you directly to the article. My tablet does wierd things. If you google the title it will take you to the article and you can view the table, which did not cut and paste with the rest.

Mominator

BayouBabe: thank you for that study.

It looks like there is still much research to be done, as that 2014 study states:

• During follow-up, 4 uterine cancers were diagnosed — all in women with a BRCA1 mutation.
• None of the women with a BRCA2 mutation developed uterine cancer.
• The 4 cancers seen are interesting, but it is a small sample and is insufficient to guide practice.
• It also notes that several previous studies have suggested that tamoxifen causes these serous endometrial cancers.

It could be that 2 of the 4 cancers were caused by tamoxifen, not the BRCA1 mutation. In that case, the other 2 cancers were about at the same rate as the general population.

When I was preparing for my prophylactic surgeries, I consulted with Genetics Counselor, my OB/GYN, my Gyn Oncologist and my Breast Surgeon. My OB/GYN and Breast Surgeon both suggested that I "get everything out" but the reasoning was "just because." My Genetics Counselor said that uterine cancer is not associated with BRCA mutations / HBOC. My Gyn Oncologist went further: "I could do a full hysterectomy on you. However, you do not need it. Uterine cancer presents with abnormal bleeding, so it is more easily detected than ovarian cancer."

Thus, I had BSO, not a full hysterectomy. I do continue to see my OB/GYN for my annual exams and she said that everything looks good.

Best wishes to all.

BayouBabe

I only had a BSO, and every check up with my MO she encourages me to think about getting my uterus removed in another surgery. I have refused. Enough has been removed until science learns more. Ugh, sometimes I wish I didn't know I was BRCA+. I think I would worry less and sleep better.

merscotland

Hello Laura and all

I finished treatment for TNBC November last year. I learned I have the BRACA2 mutation just before Christmas.

I immediately requested referral for risk reducing surgeries and have already got appointments for February (BS) and March (Gynae).

Last weekend I found a lump in my 'unaffected ' breast. I have been given an urgent appointment for next Tuesday. The docs want to identify if this new growth is metastatic spread or independent primary. I'm currently trying to find out as much as I can about the different implications for each.

Can anyone tell me if having a new lumpp automatically changes cancer staging?

Maggie

Mominator

Hello Maggie,

I don't think having a new lump automatically changes cancer staging.

First, we need to find out what your new lump is: cancer or benign. (most common causes of breast lumps here http://www.webmd.com/breast-cancer/benign-breast-lumps#1)

Second, if it is cancer, it could be either a new primary or a local/regional recurrence.

Breast cancer is only metastatic if it leaves the breast and immediate lymph node system.

Holding your hand,

Madelyn

lintrollerderby

As you are in Scotland and I'm unfamiliar with the staging and treatment guidelines there, my information may not be the same as what your doctor might tell you. The information I have is based on guidelines in the US.

If the new breast lump turns out to be malignant, it is most likely that it will be treated as a new primary. In the US, the only time a patient is re-staged (as in having the original stage changed rather than added to in the event of metastatic recurrence), is if new evidence is found within four months of the original staging and if no chemotherapy has been given.

When a new primary is diagnosed, most often it is staged independently from the previous diagnosis. I'm sure some doctors don't do this, but if the two incidences are separate occurances, they are typically staged as such.

As a BRCA mutation carrier, the chance of a contralateral primary is considered to be 50%.

Good luck to you and I hope that the new lump is benign!

mom2allboys

After being diagnosed with DCIS in June at age 42, I was referred to a genetic counselor and learned I had the BRCA1 mutation. I have NO family history of BC, but dad had melanoma and early prostate cancer (many men get prostate cancer as they get older, but BRCA is associated with earlier onset) and his mom had ovarian cancer. I was advised by my genetic counselor, breast surgeon, and oncologist to get a BSO and bilateral mastectomy. I was informed that a complete hysterectomy was not necessary. I did not hesitate and had the BMX and BSO 2 weeks after my genetic testing came back. Turns out, my cancer had become invasive, although only a microinvasion (1mm).

Since my diagnosis, I've learned a lot about BRCA and one thing is clear - researchers are continuing to learn more every day. So while uterine cancer may or may not be a current risk, with the info available now, it's not a high enough risk for me to have prophylactic uterus removal. I've also seen research showing a possible link between BRCA1 and colon cancer in younger people, but so far increased colon surveillance is not even advised.

It's important to make decisions that make sense for you NOW in light of what doctors know, but it's also necessary to keep up on research in case you may need to make other decisions down the road.

Silverpullet

I want to add my story here. I am 43. I have strong family history of Breast Cancer, 9 people on my mom's side, my mom is one of 9 kids, 8 girls and a boy. 4 of which have had cancer. About half had the gene mutation BRCA2. I was told after I requested a genetic test years ago by a gynecologist that removed an ovary due to a large cyst that I did not carry the gene mutation So I did not worry and did not go for any mammograms after that.. For some reason, I wanted proof. My doctor sent me to a oncologist for a genetic testing. Turns out I am positive for BRCA2. They immediately told me I need the other ovary out, and post breast removed due to strong family cancer. That was all around August. I had an MRI and no unusual masses or anything found. I went for a total hysterectomy and double mastectomy with nipple sparing at the same time and that was the end of October. I could not live with the unknown. I live with daily anxiety, and I couldn't deal with the constant fear. Its not the best choice for everyone, but for me it was.

As it turned out, I had the surgery, (the hysterectomy was a piece of cake) the mastectomy was harder. Physically hard, and I went with reconstruction. Immediately put in 200cc of saline in tissue expanders on the same day. After the breast were removed, the pathology report came back with a 6mm spot of cancer under my left nipple. DCIS. I was told the left nipple would have to be removed. I opted for both, as I am extremely paranoid and OCD so can't be uneven. LOL. Expanders are uncomfortable, and maybe I am tough. But they had to unfill me for the second surgery 2 weeks after the first, A small set back. I have been routinely filled since 3 week after the 2nd surgery to remove both nipples, and am just over a week away from my real implants going in. YAY!!! Because it was DCIS, they said no cancer could have spread to other areas as of yet, but I plan to go for future MRI's. I need no more mammograms and no more periods! though hot flashes are a bitch. If you need any support, feel free to contact me. I feel good about my decision and would do it again.

Meow0369

Silverpullet, thank you for your story!! I'm Braca 1 and had bi mx last year. I had 4 IDCS mm and undetected 2 mm w additional 5 calcium spots onleft then on right More undected DCIS on right under nipple but was able to keep. I am second generation w mutation and mom had BC at 39, 69 three years bf my diagnoses. Four of her sisters too.

I'm getting ready to remove ovaries and decided to remove uterus too. I'd like to know what hormone replacement are you on on if any.

joy2

Hello Silverpullet! I hope you are doing well. I am BRCA 1 positive and i am scheduled for BMX on April 25th. I am 46 years old and have a strong family history of cancer too. Reading your post and others here in this forum makes me feel that i am doing the right decision. My question to you is, after this much time do you feel comfortable with implants? thank you and wish you all the best.