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

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.

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.

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!

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

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: 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.

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

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!

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.

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.