Dense breasts and family history - DR anxiety

Aftonfog

hi everyone. I have been a frequent visitor to the site for quite a while, and I just made the leap and finally joined. I just had a virtual doctor’s appointment, and I was hoping to get some insight from others who might have a similar situation going on, or who can help in any way. My stress and anxiety levels are though the roof right now.

I am a 35 year old with extremely dense breast tissue and non cyclical breast pain. I have been dealing with extreme pain for the last seven years. It seems like over night my a/b cup breasts went to heavy, painful d cups. My life changed in an instant. For example, I can’t run, lift anything over my head, or go down stairs without pain. The first few years my obgyn told me it was “normal” breast changes and most likely caused by hormones. I tried every diet the doctor suggested (I’m 5’6” and normally about 118 lbs): no caffeine, no sugar, no alcohol, no gluten, no dairy, etc. I’ve taken every supplement that was suggested (vitamin e, evening primrose, magnesium, iodine), and Advil. Nothing helped. I even lost ten lbs and that did nothing.

I’ve seen multiple different OBGYNs, two breast specialist, and an endocrinologist (2018). The latter stated that my condition is non cyclical- couldn’t find any evidence that my hormones are out of whack.
Every doctor (expect endocrinologist) have told me to ‘deal with it’ and take Advil. It is so unbelievably frustrating.

I had an a ultrasound in 2013- negative- and an mammogram in 2018- negative- very dense breast tissue

I had to quit my job as a police officer in 2015 because I couldn’t wear the vest or perform the same physical activities I could before this started. I got divorced because I couldn’t have sex much less allow someone to touch me. (I’ve been in therapy for 5 years trying to work on it.) My ex is still very supportive, but I just couldn’t be there for him physically, and after four years, he had to bow out. I can’t even hug people without pain. I have one bra that helps to keep my breasts tight to my chest. I have to wear it if I want to do anything physical- even walking. I’m on anti anxiety medication because of how I feel and now this has affected me emotionally.

In desperation, I spoke with a new obgyn on Friday and a PS this morning. The obgyn was concerned about my family history but didn’t put me at high risk for breast cancer.

P grandmother - breast cancer -died 70s

P great grandmother- ovarian cancer - died 70s

Father- lung cancer

M grandfather - pancreatic cancer - died 80s

M aunt- breast cancer

M cousin- breast cancer - died at 37

She was the first even remotely helpful obgyn I have seen. She actually listened to me!!! We spoke for quite a long time and went through all my family history and all of my past treatments. She told me that my long term acute breast pain and moderate cancer risk might warrant MX. She suggested I see a different breast specialist (appt May 27) and a PS (whom I saw today) who performs reconstruction surgeries with her. Today the PS said he would be able to perform a reconstruction if I choose to do so. The BS I’m seeing has performed MXs with him on several women with similar cases as mine. He said he believes it will greatly improve my quality of life even if I choose not to do reconstruction.

I’m very anxious about seeing the specialist. I just hope she can help me. I am so tired of doctors telling me to deal with it and take Advil. I understand that there’s no guarantee of being “pain free” or 0/10, but I just want my life back.

I’m sorry this post is so long. I just wanted to put in as much info as I could. Thanks for reading!

Moderators

Hi Aftonfog, and welcome to Breastcancer.org -- thanks for finally joining!

We're so very sorry to hear of of your experiences with breast pain and how it's so adversely affected your life -- it must be terribly upsetting! Not to mention frustrating.

We're sure others will be by shortly to weigh in with their thoughts and experiences, but in the meantime, you may be interested in checking out the main Breastcancer.org site's section on Benign Breast Conditions, specifically the page on Breast Pain (Mastalgia) for some information you may find helpful.

We hope this helps and that you find some relief and answers soon!

--The Mods

BCat40

I am so sorry you have been going through this. I'm glad you finally found a doctor who listens. If I were in your situation, I would get an MX. My only advice is to do research ahead of time on types of reconstruction etc. and what is least likely to cause pain, so you don't swap one type of pain for another.

Rah2464

Aftonfog I am so sorry to hear about the difficulties you are experiencing. I had fibrocycistic breasts and would only have one or two cysts pop in at a time but boy were those excruciatingly painful so I cannot imagine how difficult things have been for you. I am truly glad that you have found a compassionate doctor who heard you and is offering you some options. For what it is worth, I only had familial connections to breast cancer as well, but my two sisters and I now have all had breast cancer. Two at age 54 and the latest now at age 76. Nothing hit on genetics but plenty of other cancer in the family so you are exceptionally wise to pursue answers.

One thing I would suggest is that you push for an MRI prior to making any decisions. Its just another imaging tool that for me was diagnostic when Mammography and Ultrasound failed to locate my issue.

Please take your time selecting a surgeon and type of surgery if you choose mastectomy. For me I have dealt with some residual pain issues which have improved with physical therapy and time, but nothing like the intensity which you describe. I think at this point, it sounds as though anything would be better than what you live with now. Please keep us updated as to your progress. Blessings to you and Big Hugs.

Aftonfog

rah2464 and bcat40,

Thank y’all much for your feedback. A quick update: the breast surgeon actually brought my into her office yesterday after the plastic surgeon spoke with her privately. She actually opened the office up just for me. She stated that she agreed that the BMX is her option of choice. Pain + family history (I’m in the 24% risk range). Rah, she did ultrasound and found over a dozen large cysts and the dense tissue. She did not mention an MRI, but I will most certainly inquire about it when we speak next week.

Right now I am waiting for a call back from the PS. I want to schedule this surgery and spend some time with him. I am on the fence as to if I want reconstruction, and if so, what kind. It’s just so much!!