r/BRCA

I am a 33 year old female . I’ve been spiraling out of control since I got my diagnostic mammogram and ultrasound results in last Thursday. A little background information, I had a cyst in 2021 in my left breast that came back benign and was drained out. January of this year I felt the lump come back in the same breast so I went to my doctor and had an ultrasound which the doctor told me looks like simple cysts and to not worry. Now beginning of this month I started getting some discharge from that nipple and pain and discomfort so I went back and they suggested the diagnostic mammogram. They also did a hormone test and it came back that my prolactin levels are extremely elevated. I am not breast feeding or pregnant so not sure why those would be high. I got my diagnostic mammogram last week and these were the results. I’m just very nervous and I have no family history of breast cancer and am just hoping that it’s something else :( . Anyone have a similar situation and can shed some light ? I can also use some positive words as I get ready for my biopsy tomorrow .

FINDINGS:

BREAST COMPOSITION: The breasts are heterogeneously dense, which may obscure small masses.
No suspicious masses, architectural distortion, or significant calcifications are detected in the right breast. In the left retroareolar and extending medially there is a 6 cm area of branching dilated ducts with extensive suspicious associated calcifications. This corresponds to the region of palpable concern. This is suspicious for carcinoma. There is an additional 5cm area of asymmetry noted in the central upper left breast at the approximate 12:00 position 6 cm from the nipple. However this area appears less apparent on spot compression views. No definitive mass identified on spot compression views.

BREAST ULTRASOUND:

TECHNIQUE: Complete bilateral breast ultrasound, with evaluation of the four quadrants, retroareolar regions and axillae, was performed.

FINDINGS:

Right breast:

1:00 position 2 cm from the nipple measuring 0.2 x 0.2 x 0.2 cm. Cyst.
9:00 position 8 cm from the nipple measuring 0.2 x 0.2 x 0.1 cm. Cyst.
9:00 position 8 cm from the nipple measuring 0.3 x 0.3 x 0.2 cm. Complicated cyst.
12:00 position 3 cm from the nipple measuring 1.2 x 1.00.6 cm. Cyst.
12:00 position 3 cm from the nipple measuring 0.7 x 0.7 x 0.4 cm. Cyst.
2:00 position 9cm from the nipple measuring 0.7 x 0.4 x 0.2 cm. Complicated cyst.
3:00 position 4cm from the nipple measuring 0.6 x 0.6 x 0.2 cm. Complicated cyst.
Extending from the retroareolar posteriorly at the 9 and 10:00 position extensive ductal dilatation is noted with internal echoes and extensive calcifications noted. This is believed to correspond to the branching ducts and calcifications identified mammographically. This corresponds to the region of palpable concern. This is suspicious for carcinoma.

No definitive sonographic correlate to the large area of asymmetry identified in the left breast at the 12:00 position mammographically which may represent asymmetric glandular parenchyma.

IMPRESSION: Extensive at least 6cm area of dilated ducts with extensive abnormal calcifications identified in the left breast which extends to the nipple at the 9 to 10:00 position spacious for carcinoma. This correlates with the region of palpable concern. Stereotactic biopsy is recommended for definitive histologic diagnosis as this modality is best suited to sample the calcifications. A single site biopsy may be performed as this would be representative of the entire area.

The precise location of the stereotactic biopsy should be determined by the radiologist at the time of the procedure.
Asymmetric parenchyma is noted in the central upper left breast mammographically which appear less apparent on spot compression views without definitive sonographic correlate identified. After biopsy results are reviewed MRI of the breast with contrast should be considered to evaluate for full extent of disease and ensure no underlying additional areas of concern.

FOLLOW-UP: Stereotactic biopsy.

Critical results pathway was initiated and the referring physician/physician's office will be notified of the findings and recommendations by the critical results team.
The patient was notified of the findings and recommendations at the time of exam.

ASSESSMENT: BI-RADS Category 5: Highly suggestive of malignancy.

Hey Guys,

I’ve just been diagnosed with BRCA2 at 25 years old after my dad got prostate cancer.

I am trying to decide if I want a double mastectomy, tube removal or ovary removal, and when.

My family history of cancer is strong. Both my grandmothers died of breast cancer in their 50s. My aunt died of melanoma in her 50s. My maternal grandfather and my dad had prostate cancer.

A double mastectomy to me seems very scary, I feel like my breasts are a part of who I am and are important to my sexuality.

I am open to having my tubes removed soonish with the ability to use IVF to have kids in the future.

Really just looking for thoughts and experiences with the preventative surgeries!

I’m scheduled for preventative double mastectomy in 1.5 weeks with Goldilocks reconstruction. Wondering about recovery times? I know we all recovery at different rates but looking for approximate time frames. Nervous about work and how soon I can potentially return.

Thank you

Hello everyone,

I’ve (49F) been in this group for over a year and been finding it very helpful as I have a DEIP and double mastectomy planned in less than a month. I want to be prepared so that the healing process is easier and wonder if anyone could suggest the best pillow that worked for them. I’m a bit confused about what my needs would be as I would be having reconstruction as well.

Also, can you please recommend a front zip up support bra?

Small potatoes question, but has anyone here been cleared to use spironolactone (oral or topical) for acne? My new dermatologist has suggested trying the topical version (compounded, not Winlevi) for recurrent cystic acne on my cheeks and chin that tretinoin has not helped. I am aware that this medication acts as a hormone blocker and I don't know if that's a good idea for me to use. I am going to message my gyn onc and breast onc to see if they have an opinion, but I'm curious if anyone here has experience with this so I know if it's even a reasonable ask. :)

Background, I got my tubes out last year due to my BRIP1 mutation, and will keep my ovaries for about five or six more years. I'm having my PDMX in less than three months. No BRCA mutation, but high risk for BC due to extensive family history of TNBC.

How do I get bowel movement? I’m almost a week post Hysterectomy ( Total) with oopherecromy and salpingectomy. I have had one poop! And it was sludge, mud and barely came out. I’m taking all the senna and miralax, green juice and coffee. What helps? 😩. I just ordered gas x

Hello, a quick backstory. I hate belly buttons, they freak me out. I’m not sure why. Before I had my Diep flap done I used to always clean it out, Q-tip with soap and water. Fast forward to having this Diep flap done, they reworked my belly button to take the fat from that area. It healed wonderfully, it looks “normal.” But it’s deeper, it’s now harder and very painful to clean. The painful part is awkward to explain, but if need be I will. I have an appointment coming up to talk about if I’m happy with all my results. My chest, my abdomen, and I am. I’m happy with my results. Except my belly button. And I feel so crazy, I want it removed so bad. I’m at 10+ surgeries at this point, and I just want to get my life going, but I’m just so upset over the belly button.

I don’t know what to do, I know I must make the decision on my own. But I would just like some words of wisdom. Please let me know if this doesn’t make sense. It’s 5:30am and I have been crying, I probably have lots or errors, I apologize.

Edit: I would like to take a moment and explain the pain. So before the surgery, when I’d clean my belly button, I would get this uncomfortable “zap” in my uh, downstairs area. After surgery, it’s more intense and painful. It goes from my lower back and wraps around to my bits. If that makes sense.

Edit Two: I took a day to think about what everyone has said, I apologize for my late responses. I just wanted to make sure I was replying with thought. Thank you everyone for your replies. As I’m still unsure with what I want to do, I do feel a lot better.

Hello, hope you’re all doing well.
I have a history of the woman on my mum’s side having breast/uterus cancer.
I am based in Canada, 32 yo single no kidsand my dr set me up for a brca 1/2 test. I am hesitant. Should I also get a life insurance just in case ? What else should I take into account? Was it worth it ?

BRCA 2 positive, 32 yo. I had a prophylactic BMX to temporary implants two days ago (will go back for flap recon in a few months). I know its still early, but so far recovery has been easy, and i have a very helpful husband, mom, & mil to thank for that.

Pain wise, this is nothing compared to an emergency c-section. My mom has kept me on schedule with my meds and i have only taken the narcotics twice while in the hospital, havent needed them at all at home (im not trying to be tough, i truly havent needed it).

I’m posting this in hopes it will ease your nerves if you have this procedure coming up or are on the fence about it. I imagine this experience would be much harder and scarier if i was dealing with cancer treatments and lymph node dissections at the same time. For those of us who have the CHANCE to do this before cancer hits, it is a huge privilege not everyone gets.

Super strange that some people in my life have questioned this decision/ why im having two surgeries rather than one etc, as if i havent thought about this, discussed with drs, and considered the pros/ cons myself. And i mean RANDOM people— not like close family members. That’s been my biggest surprise & i really do not enjoy explaining or justifying my reasoning….

Anyway, still awaiting pathology results of course, but i feel immensely relieved and grateful. Its a big deal, and i am sure some people have worse pain than i’m having, and I dont mean to discount that with my experience. But if you’re on the fence, i hope this little data point helps!

Hi I'm curious to how you go about getting the BRCA gene testing done in the UK. GP's are not listening to my concerns: I have a strong family history of breast cancer on my mum's side (nanny recently died from breast cancer, nanny's sister had breast cancer, my nanny's nanny had breast cancer aswell).

My mum went to all my Nanny's appointments and queried with the medical teams and oncologists but they didn't seem bothered, and neither have the GP's. (I'm a little more of a fighter until I get answers compared to mum who just accepts it).
As far as we're all aware; Nanny was never tested for the gene, and neither Nanny's sister.

It's something that plays on my mind a lot, and I'm curious to how we can convince someone to listen to my concerns and actually be tested for this.
Should I be concerned? Should I be fighting for testing?

Let me know your thoughts please and any advice is greatly appreciated

Hi, I recently had my left implant removed and it will be a few months before I can start the process of expansion and getting a new implant.

After a single google search I am now getting served tons of ads… don’t get me wrong, I LOVE that there are so many options but it’s also impossible to know what to get. I only had surgery yesterday but I’m likely returning to work in about 3 weeks so I need to have a plan.

Please share your favorites for daily wear! Also I am in Phoenix and it’s hot, so lightweight/breathable options appreciated.

My great grandma on my mom’s side died of breast cancer, my aunt (also on my mom’s side) got diagnosed with breast cancer 5 years ago and died 3 years ago. Now my last aunt on my mom’s side got diagnosed yesterday with breast cancer. I’m really scared. What should my next steps be ? I’m only 23 but my aunt got diagnosed at 35 so I want to do something. Do I go to the doctor and ask for genetic testing? What would the steps for a preventative mastectomy to be covered by insurance? I’m sorry if this is the wrong sub for this.

I am getting a robotic mastectomy (consult late this month), but I am pretty certain I want over the muscle implants for quicker healing.

(I am doing a lot of looking before I jump).

However, from what it sounds like, this surgeon will be teaming up with a surgeon that does under the muscle implants primarily or DIEP; and from other patient and his rehab specialists feedback, he expects to do 4-16 surgeries until he will say he is complete. I don't have that type of time, support, nor money.

To go back to the robotic concept:

I cannot for the life of me understand why we would do such small incisions for my mastectomy to spare me from large wounds, just to make a hip to hip incision with a long recovery.

I am a caregiver to my mother, and over the muscle direct implants with a robotic surgery makes the most sense.

A robotic surgery with DIEP, does not as it sounds like a long recovery time.

Does anybody have experiences with either of these surgery combinations?

Hi! I’ve posted on here before and it was really helpful. I’m 25 & scheduled to get my prophylactic double mastectomy in a month / reconstruction three months later and the anxiety is starting to get debilitating. It’s all I can think about or when I sleep it occupies every dream. I know it’ll pass and the hardest part may be the anticipation but if anyone could give any advice or guidance how to get through the next few weeks? I’m just obsessively thinking about what recovery will feel like and the pain. As well as what my new body will feel like and if I’ll ever feel like myself again. Any advice would be extraordinarily helpful! Thank you!

Hello beautiful ladies! I am 30 and was just diagnosed with BRCA1. Im honestly still kinda in shock about it and scared because I will be undergoing a prophylactic double mastectomy with implant reconstruction, and I had my consultation with Dr. Mary Gemignani at NYU Langone, and I really liked her. I thought she had a really nice bedside manner and spent over half an hour talking to me about everything and answered all my questions. I was wondering if anyone has had their surgery with her and what their experience was like? I'm now in the process of choosing a plastic surgeon, which is so overwhelming because I really wanna choose the best person so I have the best results possible. She recommended Dr.Levine and Dr.Choi. Has anyone had any experience with these surgeons? It seems like it's more difficult to get a consultation with a plastic surgeon than with a breast surgeon! I am looking for any recommendations too!! Thank you so much!

I’m almost 32 and getting my first imaging today (MRI). I’m also breastfeeding so my breasts feel lumpy and tender all the time. How do you deal with the anxiety? I’m so terrified

Trying to figure out what the best way to get tested is? Tried to contact a few genetic counselors but they have never gotten back to me. I’d like to do a full genetic panel, but don’t know where else to go? Did you just get tested at your primary care? Are there online ones? Is there one better than the other. Not sure where best to go?

33F. I’ve always known that my mom had BC at the age of 30, but back then genetic testing wasn’t a thing. Thankfully, she survived the cancer and has been cancer free for 30 years.

She didn’t do genetic testing and never thought to ask me to do genetic testing.

Recently I learned that my aunt (my mom’s sister) got BC, at age 59. This really pushed me to get genetic testing.

I am already expecting to be positive for BRCA mutation. And I’ve been mentally preparing to lose my boobs and potentially ovaries. I am just starting the process for genetic testing and will probably know the results in a couple of months.

But I’m just upset that my mom didn’t do more to push me to get genetic testing done sooner.

I am also upset that my family doctor doesn’t think I need an ultrasound even tho she knows my family history. Where I live you normally don’t get screened until 40. It’s almost like I need that genetic testing result to prove that I am in fact high risk in order to start the screening process earlier.

I just feel like I have to be the one to keep me safe. And this is sobering. Like I’m really on my own here.

Please dont badmouth my mom or my family doctor. Yes I’m upset but I really just need to feel less alone.

Thank you ☺️