Fibrocystic disease diagnosis

msalc

I have had severe pain in my left breast since February. My breast swelled, became hard and nipple inverted. Since this had happened two years before on the right breast (all tests negative for BC then and pain went away after about a month), I immediately went to the breast cancer center for the usual tests just in case. The doctor did a diagnostic mammogram, told me my breasts were dense and that it was not cancer (case closed for him). I was so relieved again that I took his response and left. A month later, the swelling had gone down but the pain was still there and it felt like something was pulling my nipple from the inside. I saw my PCP and basically told him I was not going back to the BC center doctor as I felt he was dismissive of the pain and seemed less than interested in finding a solution. PCP sent me too a breast surgeon who took my complaints more serious. After months of waiting for the insurance to approve it, I was sent for an MRI. Both the radiologist and surgeon believed the MRI showed lobular carcinoma and immediately scheduled a biopsy. Unfortunately, the abnormal results did not show on the ultrasound so they had to schedule an MRI guided core biopsy instead (to date, the most painful experience of my entire life). Much to everyone's surprise, the biopsy results showed no cancer but severe fibrocystic disease. This confused both doctors and they recommended a surgical wire biopsy just to be sure. I had the wire biopsy done 2.5 weeks ago and thankfully, the biopsy results were also negative for BC.

At my 2 week post op appointment, the surgeon said this was the worse case of fibrocystic disease that he had ever seen. He has since discussed the case with other breast specialists who are also baffled. What confuses everyone is that I am 58 and post menopausal (with no hormone therapy). Fibrocystic issues are hormone driven and there should be no reason why this is a problem in my stage of life. The hope is during the surgical biopsy, enough of the offending tissue was removed so my pain will be alleviated or lessened. Worse case scenario will be a mastectomy on a benign breast, if the pain is still present after I am done healing.

Still uncomfortable from the surgery and obviously a bit unnerved about the potential decision ahead so I guess I am just venting.

YellowGirl

Oh you are not alone! I am facing a similar situation but just a few steps behind. I too have had fibrocystic breast issues since my 20's. My first mammogram was at 27 because they discovered I cared the BRCA gene. I have been having "almost" yearly mammograms and ultrasounds since. I had a hysterectomy at 32 due to precancerous cells around my cervix and they removed my ovaries, so I am also considered post menopausal but take a very lose dose of HRT which I think will need to be discontinued. My left breast recently swelled up three sizes and they thought I might have mastitis. MRI was not good and have surgical oncology appointment Friday, biopsy showed a lot of stuff and no cancer. My PCP and Radiologist do not think that the biopsy and what the MRI shows is in line. So I think the next step will be wire biopsy? My left breast has now been swollen for 6 weeks. I am basically walking around with mastitis symptoms and pain in the summer heat. It's very uncomfortable. But I know there are others who are dealing with much more so I am trying to keep my attitude in check.

So this is the other breast that you are now having problems with? Did they ever give you the BIRADS category and breast density category? From what I have learned when you have extremely dense breasts like ours mammography and even ultrasound can hide a lot. I know removing that breast might seem like too much but if this continues you might be saving your life. The dismissiveness for those of use with dense breasts with clear symptoms is just reckless in my opinion, especially on a mammogram. Like I said my mammogram was clear yet my MRI was a BIRADS 4c. I might have punched someone who dismissed me based on my dense breast mammogram, I kid, but ugh! One Radiologist told me that it's like finding a snowball in a snowfield.

Also, I did research because I too thought that after your ovaries are removed or you are considered post menopausal you still might have hormonal fluctuations. I know estrogen is stored in fat and some estrogen is predicted by other organs and glands, I forget which ones. But be diligent and you will know when you feel comfortable with treatment. I'm sorry you are going through this, it's very frustrating.