Cystic Dense Breasts Possible BRCA1 Positive

Rebekah77

Hello Ladies,

Here is my story....with questions.

I am a 39 yr old mother of 4. This past summer my sister was DX with OV cancer @ 40. I was never concerned about getting cancer, as we don't have much history of cancer in the family, other than a grandfather who passed away in his 80's of bowel cancer.

So when my mom told me that my sister tested positive for the BRCA 1 gene mutation i was stunned. I was told there is a 50% chance that i too could be BRCA 1 positive. So I saw my Dr. He ordered the Genetic testing and sent me for my first Mammogram. Turns out I have to see a gentic Counsellor before i can get Genetic testing. Looks like a long wait.... So i went for my Mammogam and they called me back the next day for a recheck of my left breat and an ultrasound as well. I went back, of course really nervous. I was told my Dr. would have the results that day. I waited all afternoon and called the next morning. I saw my Dr. that day and was told i have very Cystic breasts and they are Dense. But no cancer, although i am at a higher risk.

I was just wondering that given the risk, would it have been worthwhile for the dr to just sample a few pieces of breat tissue to ensure there are no cancer cells?

Also, with the possible BRCA 1 Gene mutation, i would think that due to my sister's positive result, they would bump me up the list for Genetic testing.I live in Canada and from what i understand, that is procedure.

Thanks so much!!!

Beesie

At 39, it is completely normal to have cystic breasts. About 60% of women have fibrocystic breasts (with all that entails - it can be much more than just having cysts); cysts specifically tend to be most common in women who are in peri-menopause years, which starts for many women in their late 30s.

As for breast density, it is normal for pre-menopausal women to have dense breasts. In fact, approx. 75% of women your age have dense breasts.

So it sounds as though you actually have pretty normal breasts for someone your age. Not easy to screen, due to the density and fibrocystic condition, but normal nonetheless. Do you know why your doctor said that you are higher risk? Of course, if your genetic testing comes back BRCA1 positive, then you will certainly be higher risk, but at this point I wouldn't think that the doctor would have factored that in, since your genetic test might come back negative.

"would it have been worthwhile for the dr to just sample a few pieces of breat tissue to ensure there are no cancer cells?" No, that wouldn't make sense at all. If there is nothing that shows up on your imaging that is concerning or suspicious for cancer, how would the doctor know where to sample? Even for those of us who've been diagnosed with breast cancer, there would have been no point in having randomly placed needle biopsies. Biopsies are only done when there is a specific area that has been highlighted as an area of concern, and then several needle samples are taken from that very specific area of the breast.

Which province are you in? Every province has it's own rules about genetic testing.

dcdrogers

Can you possibly push to have an MRI done since you have dense breast? I ask because I was recently diagnosed with breast cancer in my left breast. 2 masses showed up on a CT Scan and I was sent to have a mammogram and ultrasound which also showed these masses. After having a biopsy, I was sent to have an MRI which showed not only the left breast masses, but also 2 masses and several cysts in the right breast. Neither my previous CT Scan nor my mammogram from just a few weeks earlier detected anything going on in my right breast (I also have very dense breast).

Just yesterday my doctor sent me to have an ultrasound and guided biopsy of my right breast, however, the technician informed me that "I have a very busy right breast and that they couldn't do an ultrasound guided biopsy because they didn't want to biopsy something other than what showed up on the MRI. Now I'm scheduled for an MRI guided biopsy of my right breast.

I am not trying to scare you, but wanted to let you know that dense breast really can hide things (hopefully nothing bad). I have very small breast small A/barely B yet the density of my breast tissue managed to cover up and hide some suspicious activity.

If at all possible, push for the MRI.

~Dee

Rebekah77

Hello dcdrogers,

I have requested an MRI however my Dr. informed me that they do not use MRI for breast testing, dispite that everywhere i have read suggests it can be better at detecting anything in Dense breasts. My ultrasound did pick up some abnormalities in my left breast, however my Dr. did not seem too concerned. There is a University close that has a 3D MRI machine, it is not covered by healthcare and as of yet they are not doing breast MRI's. I am a little extra concerned only because he has missed issues with me in the past. I had been urinating sand and blood clots at one point and I felt something. He said it was a bladder infection. Turns out I passed a stone. Another time I had a sore swollen foot. Xray came back clear. He did no follow-up. I went to see a foot specialist. Turned out to be a stress fracture. I was in a boot for 8 weeks. Unfortunately there are NO Doctors accepting new patients in our city or outlying communities. I'm stuck with him. I'm sure some people may think i am over reacting, or being too cautious? I am actually handling things quite well. Just being proactive. I actually just called the Genetic Testing facilities. My Dr. has not even sent the referral in yet. He has had the info for several weeks!!! I spoke to a Genetic counsllor and she said she would contact him to request my referral. She told me that once they have it I will be seen rather quickly. Let's hope the ball get's rolling.

Thanks Ladies!!

Rebekah77

Hi Beesie,

I am aware the Cystic dense breasts are common for my age. It also puts women at a slightly higher risk because there is more breast tissue (which is where cancer cells grow) and less fat. And of course harder to screen. If I had a Dr. I could trust I wouldn't be as concerned. He is in no hurry to submit my sisters Genetic info so I can be tested. If it is negative....great!!! Thats what i am hoping. I am just taking the steps to ensure that i am healthy now! The Dr, did factor in the BRCA1. Until it comes back negative, there is still a 50% chance, so that is why i was sent for a Mammogram in the first place. There are many women who due to a mutation in the family are automatically higher risk until testing can prove otherwise. I'm in Alberta!

Thanks for your imput!!

Rebekah77

Just a little update.

Meeting with Genetic Counseler March 1st. I'm looking forward to getting it over with!

I also got a new Dr. She is fantastic. Ihave been having issues with my breasts lately. I just had an unsuccessful Dutcogram today due to nipple bleeding. However the Dr. blew my duct. OUCH!! So will have to try again when the nipple bleeds again. NOT FUN! I will also be asking for a referral to the breast clinic. Some of my cysts are extremely large and painful. My breasts are b cup and one cyst is the size of a walnut. So hoping to get a few drained to take some of the pain away.

I go for a pelvic US tomorrow due to 3 periods in January and some heavy cramping and black discharge. (My periods have ALWAYS been regular) I honestly think it is due to perimenopause. Family history of early menopause. I'm having night sweats as well as a few other symptoms. But i will see my Dr. when she gets the results and go from there.

I'm not stressed or worried about anything. Just taking everything as it comes!!