31 yo, sclerosing adenosis, family history, more symptoms in 6 months time, becoming concerned
In October 2025 I was diagnosed with sclerosing adenosis. I do understand this is a benign condition, but according to the NIH, and Mayo Clinic studies, the damage the disease causes creates a “breeding ground” for certain cancers - carrying a 1-2 fold increased risk of developing these cancers in 15 years time. It’s categorized as a proliferative breast disease, usually only cause palpable zones of “thickened tissue”, and is only caught on biopsy results due to co-occurring concerns.
My experience: I was referred for a biopsy after having both an ultrasound and mammogram confirm grouped and associated microcalcifications, visible asymmetry, architectural distortion, and a palpable “lump” (for lack of a better term - I was corrected by the individual who read my results and still don’t know what to refer to it as otherwise) that runs in a strange oblong/oval shape from the right side of my left nipple toward my rib cage where it tapers off and I lose the end. BI-RADS 4. The areas of concern are all closely related from the 2 o’clock to the 6 o’clock of my left breast. I have no prior mammograms to reference since I’m 31 years old, but one was done of my right breast which was unremarkable and therefore used as a reference.
The core needle biopsy result was sclerosing adenosis. The individual who read my results did not even say that - she merely said “good news, it’s benign”. I accessed my charts and saw the diagnosis, along with all the reports, myself. Luckily, I work for a healthcare system (I’m non-medical personnel but have access to the systems database… meaning I can look up studies and medical data as anyone else in the system can, not in a “other people’s personal information” sense). Not “luckily”, I watched my (paternal) grandmother pass of pancreatic cancer after a long few decades of fighting both breast and ovarian cancer. Additionally, my male cousin just passed at 34 years old of pancreatic cancer within the past year. Just about every female I know on my mothers side, including my mother but not my sister or myself, have had malignant melanoma or precancerous skin lesions removed (I jumped cancers, but since two of the cancers linked to SA are carcinomas, and since I’m new to this, I’m not sure if it matters - so I’m over sharing).
Since October, I have had two new “lumps” (again, lack of a better term) appear in my left breast. One above and one below the original “lump” (roughly in the 1/2 o’clock and 5 o’clock, oblong/oval and close to nipple and small/uncertain shape on the outer edge closer toward ribs, respectively). I’ve also had strange nipple discharge and instances where the ducts around my montgomery glands are clogged. I breastfed three babies, all within 3 1/2 years of each other, last breast feeding about 3 years ago, and never has this happen until now. I’m also experiencing inconsistent, random dull-ish (it’s really an indescribable feeling… sharp but dull if that even makes sense) pain in the far right side of my left breast. It’s very infrequent, but still strange and new.
Does anyone have any experience? Advice? Thoughts? The more studies I read the more concerned I get. I’m in a very rural, geographically “cut off” area of the United States. Our healthcare systems are often “behind the times”. I’ve inquired about having it removed and I’m looked at like I’m insane - once met with the rebuttal of “you need to consider the emotional impact that could cause and the mental health implications accompanying it”. I assure you, I’d much rather remove the fatty tissue in my chest than risk putting my family through the pain and turmoil of what is likely to come. At the same time, I don’t want to “overreact”.
Any insight is warmly welcome and highly appreciated.
Comments
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Hi @threelittleloves, I can't comment on the sclerosing adenosis other than mentioning that without the recommendation of a doctor insurance will not pay for a mastectomy. I also live in a rural area where medical care is behind the times. I traveled 100 miles to a large teaching hospital to get care I trusted after there were delays and errors in my diagnosis. If you have friends or relatives elsewhere you could stay with or can find an inexpensive motel/campground within a decent drive of a good hospital it would be worth bringing your relevant medical records and getting a second opinion from a dedicated breast surgeon (I didn't want to rely on the opinion of the two local general surgeons.) If you did need treatment the social workers at the large hospitals are often very helpful in finding reasonably priced accommodation for those who need it. All the best.
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From the literature it appears you have a 1.5-2 times increased risk of breast cancer. That coupled with your familial history of pancreatic cancer and melanoma would make me feel you might need increased surveillance at the minimum. There are 35 NCCN cancer centers across the country. As Maggie mentioned, it might be wise to contact one of them to provide you guidance. I know you can request an opinion from Memorial Sloan Kettering that doesn't require an in person visit. That might be one place to start. Your risk of imminent breast cancer is probably low now. Could you start a savings plan which would allow you to help you travel? Where are you located? Alaska, Pacific Northwest or Northern Midwest?
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@maggie15 - Thank you for your encouragement to seek out a second opinion! I appreciate knowing it’s what someone else would do as well. My insurance requires two qualifiers for a preventative mastectomy, and the diagnosis of SA checks one of those boxes. I have been sent twice for genetic testing, and each time was mistakenly tested for leukemia related genetic markers (…definitely in the clear there at least). I do want to note that this was found to be an internal error on their coding side. On the third trip, I luckily noticed that the script itself was wrong - again a computer system error as it was printed and not hand written. I do have a new script, hand written, and am directed to go to a larger lab to have my blood drawn for genetic testing. The issue is that the lab is over an hour away. I’ll make the time to go, but due to other life circumstances we haven’t been able to pull it off yet. If that comes back positive I’ll have both qualifiers needed. If not, though, I fear they’ll recommend yearly mammograms and additional biopsies with any change. I’m not comfortable with that.
If not sooner than the genetic testing, after I’ll be seeking out a second opinion. Thank you again for the kind response.
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@jhl - It was so kind of you to take the time to look up SA studies… thank you! I appreciate the recommendation to seek a more specialized opinion. I have not wanted to “jump the gun” here - I have known too many women that have battled breast cancer and approach this situation with the upmost sensitivity. Though, I feel maybe I have needed a reminder that my hesitation may be more reckless to my own health than respectful to others. I have family around Columbus, OH, Louisville, KY, Lexington, SC, Alabama (military / moves frequently, not sure of current city), and Venice Beach, CA. I live in the Appalachias. I am able to travel, but it would be difficult unless absolutely necessary. We have three young children and no childcare. We can put a savings plan together. I’m not familiar with NCCN cancer centers, but will absolutely look into them, and I was not aware that anywhere would review your medical records to provide a second opinion without needing to travel - let along a place as renowned as Memorial Sloan Kettering. Thank you immensely for sharing! I agree that getting a second opinion is likely the most responsible choice at this point. I can’t find anything on SA that suggests it would progress with the symptoms I’m experiencing, and that has my stomach in knots.
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@threelittleloves we're just checking in on you - any updates? Hoping you've been able to secure the second opinion and genetic testing.
Would love if you could provide an update, if any!
Thinking of you!
—The Mods
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