When you’re at an elevated risk for breast cancer for any number of reasons, your doctors can calculate what your individual lifetime risk level will be. They have metrics for this, and your scans, genetic testing results and family history each play a role. It was determined that my lifetime breast cancer risk was 40%, meaning I had a 40% chance of ever getting breast cancer in my lifetime (the national U.S. average risk is 12.9% according to the Breast Cancer Research Foundation). Depending on your own personal tolerance for risk and which doctors you have influencing your decision, you may make a completely different decision than I ended up making, and that is okay. Even if your stats are similar to mine, so many individual factors are at play and they all inform decision-making.
Before we get into it, a little glossary of abbreviations might be helpful here:
- ADH: Atypical Ductal Hyperplasia. This is the benign yet potentially precancerous lesion I was diagnosed with in my left breast. My lesion was 7 cm x 3.8 cm x 3.4 cm, which is quite large considering my B cups.
- DMX: Double Mastectomy
- DIEP: Deep Inferior Epigastric Perforator. You don’t actually have to know those terms, but this is what the breast reconstruction surgery I chose is called. It refers to the type of blood vessels used to attach blood supply for the belly fat flaps. Essentially, when I say DIEP (pronounced “deep”), it means they cut out a slab of my belly fat to make me new breasts and then sewed my abdomen back together. It results in a long horizontal scar on the lower abdomen that goes from hip to hip.
- dx: diagnosis
I am happy to share my personal decision-making journey on the road to DMX in the hopes that it not only can help others in a similar situation to organize their own thoughts, but also to help others realize just how individual each person’s decision can and needs to be. I want to be extremely clear that nothing in this article should be considered medical advice, and to always consult your individual care providers regarding your own decision making. I actually had to ignore the generalized advice on this topic, since my decision is not typically the first line of defense for my dx.
Just for a quick backstory, I began having breast pain on my left side in the Spring of 2023. I had recently had my very first mammogram, which was clear. I ended up being recommended to see a genetic counselor, who had me tested for ALL of the cancer genes. I was negative for all known gene mutations associated with cancer, and still had the pain. I had an ultrasound and another mammogram (Feb 2024), both of which were clear, and I requested an MRI. This MRI (July 2024) found ADH, which is a non-cancer, non-mass lesion, meaning no clear borders like a lump or tumor. Some doctors label ADH as precancerous, while others state it “encourages the growth of cancer.” This lesion, my negative gene tests, and my family history are how my doctors arrived at 40% risk for me.
I was personally not comfortable with a 40% cancer risk, especially since my own mother was diagnosed with breast cancer at 46 years old. I had always had this underlying feeling that I would get cancer someday, and while going through the biopsy pathology results, my first thought was NOPE! We are going to stop this right here. Of course, I thought “stop this” meant scoop out the “bad” area and be done with it. Unfortunately, I was woefully under-informed at that stage, and I had to pour myself into research about my new dx and all that it entails. It’s incredible that you can go from never hearing a dx before to becoming a virtual (amateur) “expert” in a matter of weeks , but when you are faced with life-changing decisions, you do it simply because you have to. I wanted to have ALL of the information I could to consider all angles and possibilities.
I was quickly determined to make the most pragmatic decision I possibly could, so I got to work reading and making a Pros and Cons list that fit my specific situation. You will see on the lists below that I was choosing between DMX and Incisional Biopsy. Double Mastectomy in my case meant WITH reconstruction. I never considered going flat as some women do, and by the time I made this list I had been told I was a great candidate for DIEP flap reconstruction. It was determined by two different plastic surgeons that I had enough belly fat to provide me with similar sized breasts as I had before. How lucky am I?!
Here are my Pro/Con lists:
I’ll go into each quadrant to explain as needed.
Pros of Double Mastectomy for ME:
I wanted this DONE and over-with. I wanted it gone-for-good. I didn’t want to have to wonder if they got it all and I wanted my risk as close to 0% as possible (My post-surgery risk is 1-5%). I didn’t want to have further testing, which I would need every six months without this surgery. More scans would likely lead to more biopsies and procedures, and could eventually end up in a DMX in several years anyway with a ton of medical trauma in between. I found out later that since I had all of my breast tissue removed, I don’t have to even have mammograms going forward!
A big priority for me was to avoid chemical treatments. My family has gone through both of my parents having cancer including the treatments that go with it. I know the treatments are the hardest on the body, many times being even worse than surgeries. Especially without having a cancer dx, I wanted to avoid cancer treatments (which are sometimes given preventatively).
Time off work was not a deciding factor for me, but I was trying to think of silver linings should I take this route. It turns out that I absolutely loved my time at home, especially once I was more mobile and feeling better! There is an asterisk next to “cosmetic upgrade” here for a reason. I want to be clear that this surgery’s intent is not for aesthetics, and many who go through it do not experience an improvement in the look of their breasts. HOWEVER, since I was searching for pros, this made the list as someone who was considered an excellent candidate for natural tissue reconstruction and who had breastfed three babies which resulted in sagging and breast volume loss. Fortunately for me, I can say I do think aesthetic improvement was achieved. Not perfect, for sure, but better lift and shape compared to pre-surgery.
As a result of my three pregnancies, I have diastasis recti (an abdominal muscle separation) that never fully closed after birth. I also have a small umbilical hernia, meaning some tissue is bulging at my belly button internally. Neither are painful and I would not likely have had them surgically repaired outside of this surgery, but I asked about them since they were going in there anyway. It turned out that my plastic surgeon doesn’t like to repair DR during DIEP because he thinks it’s too much at once and can cause tension or tightness in the abdomen which could add to my discomfort. He went in thinking he might repair the hernia, but it ended up being so tiny that he left it alone. I felt I should add this paragraph since despite having them on the pro list, they didn’t happen.
The last pro to speak of is symmetry. When deciding whether to keep my “good” nipple (as in the one on the healthy side without ADH close to it), my breast surgeon advised me to consider two things: Risk and symmetry. Glandular tissue is any breast tissue that is involved in milk production- lobules, milk ducts and nipples- and it is where almost all breast cancer begins. Leaving behind any glandular tissue adds risk, therefore nipples = risk. There are many women who determine that their desire to remain intact is greater than their fear of the tiny risk that keeping nipples adds. I respect this and in these moments am overwhelmed with gratitude that we have the ability to make these choices for ourselves about our own bodies. For me, as stated before, I was and am risk-averse. No amount of added risk was worth it for me. My surgeon added that since I could not keep one nipple, I would be dealing with a lifetime of asymmetry if I chose to keep the other. With a skin-sparing mastectomy, she could keep my skin intact and simply cut a circle around the nipples, leaving symmetrical circles that could later undergo nipple reconstruction or nipple tattoos. Aesthetically, it seemed like a better long-term choice for me. I do not regret losing my nipples, though there was a grief around it at first. This is ultra-specific to me, but my circles are not symmetrical after all because of a surgery complication. I believe tattoos can remedy this in the future.
Cons of Double Mastectomy for ME:
This is radical, major surgery. You mean to tell me that I’d be getting CANCER surgery for something that ISN’T even CANCER?! Hearing DMX as a possibility is now a core memory for me, and not a good one. I remember I was in the parking lot of my daughter’s summer camp because I was about to pick her up when I got a call from a nurse practitioner who was basically planting the seed that the surgeon may bring this up as an option. At the time, I had said I’d consider single mastectomy, but I thought it was truly absurd to cut off a completely healthy breast. If you are thinking this, too, you are clearly not alone. DMX is not a common management plan for ADH. This is for many reasons, I’m sure, but a big one is that ADH is often quite small and can be removed with an incisional or excisional biopsy (you may be more familiar with the term lumpectomy; it’s just this isn’t technically a lump so different terminology is used, but it’s the same idea).
It is often recommended that, after DMX with DIEP, a person takes around eight weeks off from work. This is individual. My surgeon’s office wrote my FMLA (Family Medical Leave Act, which protects a job but does not ensure payment) paperwork for 12 weeks, leaving it up to me to decide when I was ready to return. I took 10 weeks and I did not want to go back sooner, though I probably could have physically done so after eight. Those who work from home or have desk jobs sometimes go back sooner, and those who are required to lift heavy things for their job may wait longer. There is always the possibility of complications like open wounds that would require further time off as well.
Smaller biopsies take less time to process for pathology. After DMX, it took my pathology report 10 days to come back. This is not a reason to choose a procedure in my opinion, but it was a con of DMX for me. If an incisional biopsy was done, the surgeon would have removed a bigger chunk of my lesion than they could get with my initial core needle biopsy. If that came back positive for cancer, I would have the opportunity to undergo chemo or radiation to try and shrink the cancer before deciding if DMX was necessary. If I went straight for the DMX, I’d clearly lose that ability. Since my priority was avoiding chemical treatments, this con didn’t make DMX seem worse.
During my DMX, my breast surgeon did something called a sentinel node biopsy. This means she injected dye into the left breast to rule out malignancy to the lymph nodes closest to that area, and three lymph nodes were removed in the process. Once breast tissue is gone, there is no way to do this test to see whether it has spread to the lymph nodes, so even though they didn’t know whether there was even cancer to begin with, this was the only chance to rule out lymph node involvement. The big downside to this was that more nerve endings were cut during that part of the surgery, leaving my left arm with decreased range of motion for longer, and ongoing numbness in my armpit. This is improving, but is not yet fully resolved at 6 months post-op. One could do DMX and opt out of a sentinel node biopsy, but I chose to do it since my ADH was so large that my surgeons suspected to find malignancy hiding. There are 15-20 lymph nodes in each armpit, apparently, so I should not have long-term swelling or lymphedema there after losing just three (and I don’t now).
I was definitely sad about losing my nipples at first. I was worried it would make me forever-unattractive or take away my femininity. I no longer feel this way, but each person has to process things in a way that works for them. If I processed it differently, I could have chosen to keep my healthy nipple, and maybe my whole healthy breast, but I will get further into why I didn’t choose to keep any tissue in the next section.
Depending on how your health and pay benefits are structured, you may find you can take plenty of paid time off for a big surgery like this. This was not the case for me. I used up my PTO in the first 1.5 weeks after surgery, so I ended up taking 8.5 weeks completely unpaid. It is a privilege that I realize many do not have, and it is a big reason why I could not take the full 12 weeks that FMLA allotted to me.
Pros of Incisional Biopsy for ME:
Let’s first define the term and its counterpart, excisional biopsy. The difference has to do with the amount of tissue removed. An excisional biopsy is the removal of an entire suspicious area, whereas an incisional biopsy is the removal of a smaller sample of such tissue. The surgical options presented to me were either Incisional biopsy or DMX. These options seem drastically different, and they are. Why couldn’t they just do the excisional biopsy and remove the whole swath of ADH?! In my case, it was due to the size of my lesion and the fact that knowing its borders was impossible. When ADH is small, as in a few millimeters or so, they can scoop the whole amount out easily, achieving an excisional biopsy. They know where it is because during the core needle biopsy, a metal marker is placed at each biopsy site. When they go in for surgery, they know the measurements of the lesion, see the marker and they can remove the whole thing with reasonable confidence. They can be certain they got it on the next followup MRI. My lesion was 7 cm x 3.8 cm x 3.4 cm, similar to the amount that is in a regular container of Play-Doh. During my core needle biopsy, they tested two sites and therefore placed two metal markers. They knew that where they tested had suspicious tissue, but they did not mark the borders of the whole area. In order to achieve a excisional biopsy for my size of lesion, they would have had to put me back into the MRI and inject several more markers around the borders. This is because ADH tissue is not visible to the naked eye- mine could only be seen via MRI machine (not mammogram and not ultrasound). As if that wouldn’t have been traumatic enough, they would then completely maim me in the process of surgery, as the lesion’s volume was at least half of my breast size and was irregular in shape. This whole process was fully unreasonable to my surgeons, due to the poor aesthetic outcome and the barbaric method of marking the borders. So, incisional biopsy was left as the less-invasive option. Can you see how exhausting this process was?
Getting to the actual pros of incisional biopsy, it was clearly the less-invasive option with much less recovery time. If I felt comfortable with more of a “watch and wait” mentality and valued breast preservation highly, this would have been a good option. Why would I want to lose my breasts if I don’t really have to? Believe me, I waffled on this for many reasons. After all, there was a chance that I may never develop cancer. A smaller surgery could do a more in-depth job at ruling it out, after which I could make a more informed decision on a larger surgery or potentially avoid one. If there was some cancer found from the incisional biopsy, I could have the opportunity to hear various treatment options to shrink it before further surgery was needed. I’d be able to keep my nipples (for now) and keep my healthy breast. Less trauma was definitely appealing to me.
Cons of Incisional Biopsy
I may be repeating myself here based on the explanations I’ve provided above, so I’ll try to be concise. A big con for me here was that it would likely be the first of many future procedures and biopsies. My first biopsy was so traumatic (you can read about it here) that I was quite averse to actively choosing to put myself in that position in the future. Each surgery would impact the look of my breast, and being cut open time and time again could leave me asymmetrical and, well, deformed. Even after going through multiple potentially traumatic procedures, the ADH would never be all gone until the entire breast was gone. Living in that mental limbo was unacceptable to me. The healthcare anxiety, the repeated appointments, the phone calls for pathology results- it felt like too much to bear. I wanted to protect my mental health going forward, and this less-invasive option would do no such thing.
If I did not have all of my breast tissue removed on both sides, my 40% lifetime risk of cancer would be no lower. Even if I had a single mastectomy, and all of the ADH was gone, I’d still continue with this risk level for the other breast. If I chose the less-invasive surgery, my surgeons told me they would recommend Tamoxifen- a cancer drug. Tamoxifen is an extremely effective medication and it can often be given at very low doses in an attempt to minimize side effects while still providing protection. For some, it can cut future cancer risk in half with minimal downsides. However, despite my deep respect for its efficacy and the ability to manage negative effects, I considered this drug one of the chemical treatments I wanted to avoid. It can trigger early menopause, and I knew that would come with its own issues I didn’t want to deal with at 39 years old.
*This is NOT medical advice, I am just trying to share my perspective while not demonizing something that could be an excellent choice for others.*
Getting a Second Opinion
Choosing your medical team plays a big role in feeling comfortable with an important decision like this. Interviewing doctors at two major hospital systems shed light on the fact that not all doctors are right for each person. Personality, method of delivering and explaining information, and support for individual patient choices were all big factors for me when choosing a breast and plastic surgeon. While it is often a good idea to get a second opinion for a large medical decision, what really spurred it for me was not particularly liking the first surgeon I met with, and hearing that my nipple couldn’t be saved. I needed to know for sure that was the case, and to my great relief, I loved the second surgeon I met with and knew we were a good fit immediately. Her approach was more risk-averse and she provided more advice and guidance than the first surgeon, and I found that her outlook on the situation aligned with mine. She did not scare me into a DMX, though. She explained all options clearly and in a way I could understand, and stated that she would support whatever decision I made fully. And I believed her. I have and will continue to recommend her to anyone and everyone, just as she was recommended to me by two separate people whom I happen trust implicitly.
In Conclusion
If you are still reading, I am surprised and appreciative. I know that my decision-making process is mine alone, but I have already had a lot of people reach out to me who are in similar situations as a result of sharing my journey on social media. Many have asked me how I arrived at my decision, and I want to help. Honestly, I know the whole process will feel like a blur in the future, so I wanted to record a real-time account of how I got here. This way, I can both remember it and potentially offer some perspective to others faced with the same choice.
Please feel free to reach out to me by commenting here or finding me on Instagram, TikTok or Threads @eatwhatfeelsgood . On those apps, I have shared my ADH dx and surgery experiences starting in the late summer of 2024 with my surgery being 11/5/24. If you really want a deep dive, you’ll find it in those videos. Thank you for being here.
Here are my other ADH/DMX related articles from this year: