Oophermtory with a neg. BRCA/BART but strong family hx?

Pointvalue · September 2012

Hello,

Iam 46 years old and had a pbmx on 8/7 due to a significant family history. My final pathology revealed lobular neoplasia. I am glad I was proactive and had the surgery. This morning I followed up with my breast surgeon. She is also an oncologist. She feels that I am at average risk for ovarian cancer. She suggested that I see a Gyno/oncologist as a second opinion.

My family history of bc is significant. Mother dx at 48 died at 53. Her sister dx at 60. Two maternal great aunts; one dx in her 50's and the other at 68. Paternal grandmother and her sister both dx at 70. There is no history of ovarian on either side of my family.

Have any of you ladies been advised to have oophermtory because of family hx of bc but negative for gene mutation?

Thank you so much!

Elise

farmerlucy · September 2012

Elise - My bro is a gynonc and once I got the brca and bart negative, he said I was at average risk (I think like 2%). However he did have me get an ultrasound and uterine biopsy just to be on the safe side. Glad your PBM came out great! Jill

azul115817 · September 2012

Hi Elise,

I was diagnosed with DCIS in 2010 at age 44. I had no strong family history of breast cancer, but my maternal grandmother had ovarian cancer. Because of that and my relatively young age at diagnosis, I had the BRCA testing. The test came back negative, and at that point my counselor said that there was no need for an oophorectomy since my risk was not much higher than anyone else.

However, less than a year later, my 65 year old mother was diagnosed with Stage 4 cancer with an unknown primary. Her oncologist believes that the origin is most likely breast or ovary. My mom also tested negative for BRCA. But since my family history was now so strong (3 generations of probable breast or ovarian cancer), my counselor recommended a prophylactic bilateral oophorectomy.

My sister and I both had the surgery in May (she at age 43 and me at age 45). I don't regret it for a minute. The recovery was easy, I have yet to have a symptom of menopause (not even a hot flash!), and most importantly, great peace of mind.

Best of luck with whatever you decide!

Pointvalue · September 2012

Thank you Jill. Do you have to follow up with transvaginal ultrasound annually because of your family hx and own personal hx?

Thank you Azul for sharing your story with me.

Always,

Elise

farmerlucy · September 2012

As far as I know, I don't need to do any more screening than the average woman. So at this point I am not planning on it, nor did bro recommend it. However that might not be a bad idea. Just no more uterine biopsies! EEK that hurt!

Brip1geneticmutation · January 2015

I tested positive for a new gene mutation called BRIP1 in November. As you may know, it carries a elevated risk for ovarian and breast cancer. It is a fairly new gene mutation and there are not clear cut guidelines on how patients should proceed.

So, here's what has happened so far:

My mom told me she had the BRIP1 gene mutation and when I went to my OBGYN in Nov. he recommended that I see a genetic counselor. So, we mapped my family cancer history (high in ovarian and breast, especially on my maternal side) and she ran the genetic panel. So, like I said, I have this BRIP1 mutation.

Next- the genetic counselors recommended I see a gynecological oncologist. I did that, and she was very informative and we discussed options.

She said she could do a laproscopic surgery and remove the ovaries, but also mentioned the possibility of taking out my uterus as well. She said that way, I may be able to take some low dosages of hormones to help with the instant menopause onset (hormones are still very controversial too). She said this can be a lifestyle change and can cause problems for some people. A friend told me her surgical menopause was horrific and that she still deals with the side effects on a daily basis. There is no screening for ovarian cancer and it is a silent killer and often when found it is too late. I don't want that, but also have a history of depression and those side effects scare me.

In the meantime, Dr.set me up with a transvaginal ultrasound to check on things until I make any decisions about my ovaries and any possible surgery.

The genetic con. also recommended that I see a breast oncologist, so I did that too. I met Dr. Oncologist for breasts and she set me up with a breast MRI on this Friday, and I had a 3d Mammogram last week, she wants to do the MRI this week bc I have dense tissue.

Dr. Breast Oncologist mapped out some plans of action that I can take- ranging from least aggressive to most aggressive. Of course, she said I can get 3d mammos twice a year, or I can see a medical oncologist and take a preventative med... I think tomoxifin or something like that??? My friend at work took tomoxifin and it caused severe blood clotting issues, so I am just trying to learn as much as I can.

The breast oncologist also looked at my breasts and gave me a few options if I wanted to do a double mastectomy. She referred me to plastic surgeon to discuss those options for different types of mastectomies.

So, I am definitely in the information gathering stage and am seeking as much info as I can find.

Any insights would be helpful and appreciated. Thank you. I'm 36

jeb1959 · February 2015

I tested positive for a VUS in the BRIP1 gene a year ago when I had the new panel testing done. I had IDC in my right breast in 2010 and have a strong family history of cancer on both sides including a mother with breast and a paternal grandmother who died in her mid 50's of ovarian cancer. It's very likely one of her sisters died at an even younger age in her late 20's of ovarian. I am BRCA negative. Four years on Tamoxifen took its toll on my uterus and a year ago I had a hysterectomy and had them also remove my ovaries and fallopian tubes at the same time. It may be a while before I know anything else about BRIP1 but, given all the cancer in my family, am comfortable with my decision to have the ovaries removed. Pretty much all of my doctors thought it was the right decision based on my family history and my own BC. My side effects have been manageable but I was already in menopause thanks to Tamoxifen and my age, which is now 55. My parents are both living though neither has ever done any genetic testing despite both being cancer survivors (breast and prostate).

luvmyfam4 · September 2015

I too have tested positive for the BRIP1 mutation. Family history is vague mothers side- great grandmother had double mastectomy, grandmother had uterine cancer; don't know fathers side. My mother and my great aunt are moving forward with genetic testing to see if it's on that side of the family. Genetic counselor and oncologist recommended ovary removal and possible mastectomy. I'm ok with the ovaries coming out just struggling with the mastectomy simply because of the lack of information about the gene. My tumor was 6cm. in the underarm tissue, I had 8 rounds chemo, and need to do radiation because tumor was larger than 4cm, no lymph nodes involved and triple negative. Curious if anyone had mastectomy because of BRIP1 mutation? I'm 44. Thinking I would rather have surgery now while I'm young and healthy then possibly getting a 2nd BC when I'm older and having to do it then. Thanks for any input.

Oophermtory with a neg. BRCA/BART but strong family hx?

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