>>> Below is a lengthy post explaining the details of my c-word diagnosis and the diagnostic process along the way. I announced my diagnosis and very briefly explained it in my April 7th post (read it here, if you haven’t already). I have decided to include some personal photos from the process for the following reason: when I searched for resources with information and images of what to expect throughout this process (from scans and biopsies to the mastectomy), I found very little in the way of images to visually comprehend what my body was going to be put through. I found post-reconstruction (before and after’s) and post-mastectomy images, but really nothing that resonated with my own journey. I resolved then that I would document with photos along the way so that maybe more young women, like myself, who are (maybe) scared to death about what to expect like I was could find these posts and see the (visual) answers for themselves. So, be warned – you will see some side-boob in this post. <<<
There have been lots of questions from everyone I run into, mostly the same few questions that everyone is thinking/wondering; so I thought now that I’m sitting in bed resting/healing, it would be a good time to update and answer these. As always, please feel free to share this post/link with anyone you wish – I hope it clearly conveys the facts of how my cancer was detected and does not instill a sense of urgency for every 30-something female to run to her doctor and demand breast scans. I will just say – trust your gut, and also, listen to your logic… if you find/feel something on/in your body that makes you nervous or uneasy, or that you’ve never noticed before, there’s simply no reason you shouldn’t let a medical professional examine you.
Here are the questions almost everyone has asked me. The second half of this post is a very detailed account of the scans/imaging and biopsy procedure itself since people have also asked what all of that was like. I want women to not fear getting checked (and the processes that may follow); there is no amount of mammogram-boob-squishing, needle-injecting, ultrasound-wand-mashing that would scare me away if I knew that some part of my body needed investigating. Pain and fear are temporary; our health is our longevity. We owe it to our loved ones to be brave enough to ask for answers even if the answers could be what we never thought we’d hear – and it’s okay to want to know how every single part of each step will go. It’s also okay to be anxious – but I hope my posts can help with that.
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The Teets: Part 1
Q & A
1. Family History of cancer:
Nope. No family history of any cancers. No known genetic mutations (although no one had a record of having that checked, either). I did test positive for a single-side genetic mutation called the PALB-2 mutation (each gene contains two legs, one from each parent, and only one leg of my PALB-2 gene was incomplete). This particular mutation presents about a 35% lifetime (age 0-70) increased risk for breast cancer.
2. How did you find the lump, or what led to you going to get checked?
I have always done self-checks on my breasts. Sometime in my early 20’s, I was told that my breast tissue was “lumpy” and dense, which would make it harder to detect any suspicious growths and that monitoring my tissue myself would help me determine if anything new ever presented. That said, I was lying in bed one night in January (of this year, 2019) doing a self-exam when I found a pea-sized, hard lump in the lower left quadrant of my left breast. It was actually between two of my “normal” cystic-type tissue masses (lumps). The size of it was what alarmed me, ironically; all of my other cystic spots were anywhere from dime-sized to nickel-sized masses, and I’ve had them for as long as I can recall. I was able to palpate this new tiny mass (roll/move it around) which gave me a little bit of comfort, as I had always heard (& *thought) that cancerous growths are immobile and don’t usually move/rotate. In any case, after a few days of not being able to get it off my mind, I thought it would be best to have my doctor check it herself. Once again… something in my gut just told me to make an appointment.
3. How did doctors know to pursue further tests/scans?
At my appointment with my doctor, we talked about the fact that I have lots of lumps and bumps and she pointed out that to her, it all felt like my “normal” (my normal being very dense and cystic) tissue. However, she looked through my medical file for a record of any breast scans and there were none. She recommended, due to the nature of my dense tissue and my age, that an ultrasound of the area would be a good idea, even if it meant finding out this was a small, harmless cyst. She recommended this also due to my history (mainly the last three years) of increasingly severe anxiety; she knew that our having a diagnostic evaluation would put any worry to rest.
4. Reconstruction: What kind of reconstruction are you having? You look like you’ve already had implants put in.
I am in the first stage of a 2-part reconstruction process. When I had my bilateral mastectomy, my plastic surgeon worked along with my oncology surgeon to place tissue expanders, which are what I have now. Every week to two weeks my plastic surgeon would inject a small amount saline into the expanders in order to stretch the skin back out. My procedure is called a “skin and nipple-sparing bilateral mastectomy with tissue expander placement”, meaning they took all of the breast tissue but left a thin matrix of skin as well as my nipples intact. Because the remaining skin is so thin, it has to be held out in shape the same way a deflated balloon would need to be pumped back up with air. My plastic surgeon also placed a sheet of collagen called a “dermal matrix” to help support the skin. This was all done in the first procedure on May 8th and my second procedure, part 2 of reconstruction, is scheduled for mid-August. This is when the expanders will come out and the permanent implants will be placed.
5. What were your reconstruction options?
This has been a very controversial topic. While I truly appreciate well-meaning people/friends/followers sending me articles regarding the safety of breast implants, I promise you, I have done my research. I met with four different plastic surgeons as well as my oncologist, general physician, and OB/GYN – each of these doctors is an integral part of my medical team and I value each of their opinions more than anything else. We discussed the information I had found, my concerns, and my options with each of them.
Breast reconstruction options following a mastectomy are:
A) no cosmetic reconstruction
B) reconstruction via DIEP Flap procedure (creating new breasts out of the woman’s own tissue and fat by grafting – click the link to read more about this procedure).
C) reconstruction via implants (silicone or saline).
>> The ABC’s of (my) BC ReCon: <<
Of all the doctors I have consulted with and been examined by, every one of them determined I was not a great candidate for the DIEP Flap procedure, which was really disappointing to me. I wanted my reconstruction to be as natural as possible and I wasn’t happy about having to entertain the idea of implants as an option. Clocking in at 112 lbs, I do not have enough fatty tissue to graft to create two symmetrical breasts. This isn’t a bragging right, it’s the medical requirement for the procedure for a woman to have a minimum percentage of body fat to graft. My other two options were to have no reconstruction or decide between the two types of breast implants.
Initially, I had my heart set on saline implants if prosthetics were to be the route I had to take. In my head, I knew that in the event of a leak or rupture, my body would absorb the saline solution from within the implant and we would immediately know that something happened. It seemed like a no-brainer. The first three plastic surgeons I met with gave me little to no input as far as an implant (type) pros and cons, so my decision was based on my own opinion. Then when I met with my fourth plastic surgeon, the stars aligned (angels sang) and I knew he was the doctor for me. He explained in great detail both types of implants and the pros and cons of each. When it comes to breast reconstruction post-mastectomy, a “one operation fits most” breast augmentation procedure is no longer the bottom line. Saline implants are heavier and redistribute their weight due to the liquid contents, creating the possibility for rippling under the already thin layer of skin over them. Silicone implants are almost always used in reconstruction surgeries because of the (closest) natural look and feel that they produce for the woman after she’s had her own tissue (and therefore the breasts that were unique to her own body) removed. I IMMEDIATELY protested this, citing all of the recent news and articles about silicone-induced autoimmune illnesses (and rare cancers) among women with silicone implants. My doctor (whom I will refer to as Dr. Hawkeye, from here forth) had scientific, research-based answers to this concern: the majority (nearly entirety) of the cases regarding both the “breast implant illness” and also the very rare cancer ALCL related to the same implants were linked to textured “gummy bear” silicone implants. Read more from the mayo clinic & FDA here. I have spent the last three months researching and reading studies about textured vs smooth silicone implants after that initial meeting (and subsequently hiring/putting my girls into the hands of Dr. Hawkeye, literally and figuratively). I know my risks; I’ve read the studies and even dove into investigating various implant manufacturers to learn about “brands” having any involvement in the illness cases.
So the final decision for my reconstruction is smooth silicone implants. > Period. <
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The Teets: Part 2
Mammogram, Ultrasound, and a Biopsy – The Diagnosis
It took about two weeks to get in with the breast center for an evaluation/ultrasound. The breast center coordinator called me to set up my appointment time and mentioned that my “mammogram and ultrasound” appointment would take about two hours. Nothing was mentioned to me by my doctor about having a mammogram so I just assumed the coordinator was confused regarding what scan was ordered. When I asked about the mammogram (I told her I was only aware that I would be having an ultrasound), she informed me that their “standard of care” for any woman over 30 with a “suspicious area” of the breast to be scanned would receive both mammogram and ultrasound imaging. I wasn’t very happy about that – I thought I had several more years to research mammograms before I decided if I would even have one done! Once again, my gut told me… go ahead with it. So I scheduled it.
The day for my scans arrived; I had set the date of the scan for a day when Jake was off work so that I wouldn’t worry about childcare and about picking Liam up from school. I arrived at the breast center, alone, changed into the (surprisingly comfy) pink robe, and then waited about an hour for my first scan.
The mammogram itself is *nothing* to be scared of, ladies. I’m telling you. I have [had] very dense, sensitive breasts and don’t even wear underwire bras because they aren’t comfortable for me.
Here’s how it goes: They place each breast, one at a time, between two clear plates and then the technician takes the image (they are electronic x-ray based, so it’s like digital images, essentially). She took three different images (angles) on the right breast and then moved on to the left. I noticed something about her demeanor change after the scans on my left breast, and I assumed it was her seeing the cysts. I asked her if she could see my images, I wanted to see the “cysts”; I’m not a medical professional but I do have a few years of dental imaging under my belt so I at least can understand the difference between the dark and the light parts of anatomy on the images. What I immediately focused on, instead of the larger opaque cystic areas, were tiny little sprinkle-type dots formed in a cluster about the size of a pencil eraser. I’ll just say that from that point forward I knew something was indeed not “harmless” about what we were seeing and the technician verified my hunch when she immediately ordered 3 more images and a STAT reading from the radiologist.
I waited for about another 40 minutes for my ultrasound. When my technician called me into the room, the radiologist followed right behind me. She explained that what the mammogram images had shown were called “micro-calcifications” (see: MC), and that she wanted to perform the ultrasound herself to verify. These “spots” are not easily detected and wouldn’t necessarily show up on ultrasound images, according to the radiologist; she said her goal was to look for what could be hiding in the tissue, around or near these calcifications. The calcifications themselves are not harmful or pre-cancerous… however, in some cases, they act as “red flags” for tissue changes that need to be assessed.
Let me reiterate this, ladies:
THESE CALCIFICATION SPOTS DID NOT SHOW UP ON ULTRASOUND IMAGES.
Had I refused the mammogram and only done the ultrasound, doctors may not have even known to look in the hidden area up/under/around/behind these calcifications where a tiny (< 3mm mass) had formed inside a duct. This mass was separate from the harmless cysts that I also have, which themselves were clearly visible on both mammogram and ultrasound images.
>>>I know that many women are exploring other imaging options to replace mammograms due to radiation exposure, and I would fully support any friend who chose to have other imaging done; to the same friend, I would ask this: is skipping this scan due to the menial amount of radiation exposure from an extremely sensitive (therefore highly accurate) 3D mammogram worth your peace of mind for your future? Are you going in for your first mammogram or your sixth? If you need a baseline check for a specific reason (especially before age 40): family history, genetic testing results, or a suspicious area checked – a 3D mammogram is necessary and VITAL in early detection. Period. <<<
At the end of the ultrasound, she gave me the news that I had dreaded (but knew was coming) the entire appointment: she wanted a biopsy of the area, as soon as possible. She explained that these MC’s are actually very common occurrences in women, especially common as women (the breast tissue) ages. In a small number of women, (LOL – right?!), these calcifications present themselves in a way that almost surely means there could be malignant tissue changes closeby. In cases such as mine, given my (young) age and the formation of the MC’s, she said that protocol is to always biopsy in order to rule out any early malignant changes in the tissue. We set up the date for my biopsy and I drove home, crying my eyes out.
I just knew.
Second Appointment – Ultrasound-Guided Core Needle Biopsy:
The day came for my biopsy and I was prepared as I could’ve been… and by that, I mean I had taken some medication to “ease my anxiety”, per my doctor. Two, to be exact – thankfully (ladies – don’t be afraid to be real with your doc and tell them you’re scared if you ever have a procedure like this scheduled. Your doctor knows you and she/he will know what’s best to help with your anxiety. They do it all the time, and they know you aren’t a pill-fiend.) Jake came with me for this appointment, both for support and also because I was personally on my way to Jupiter via antianxiety meds. I changed, went right into the ultrasound room, and the process began pretty quickly. The doctor gave me a local anesthetic (for the upper dermal layers), and then a deeper anesthetic (into the deep/breast tissue) where she would be biopsying. There was a pinch, a little sting, but not much beyond that. Then she explained the next step, the actual biopsy, and what to expect.
That’s when I saw the Avengers-Mega-Iron-Weapon-Needle-thingy.
I call it that because, holy *&$%, it was an intimidating device to look at. (I’m being real, as promised, but hang in there with me, y’all. I survived it – so can you.) She made a small incision in the skin just beside my breast fold (this is the area where the duct in question was located) and then went to work. The core-needle device uses a kind of air-compression technology to quickly penetrate a mass and then “grab” the interior tissue to be sampled. Each sample she took produced a loud “POOF”… thankfully she forewarned me about that part; otherwise, there would have been some other unexpected POOF sounds coming from that room.
The imaging technician used the ultrasound wand to hover (and “hover” with pretty firm pressure onto my boob), over the areas where the doctor wanted samples from in order to ensure the samples taken were from the detected “mass” (duct). This technique is used in order to guide the needle into the exact spot needing to be biopsied without other, unnecessary tissue removal. Then she was done. She used some medical Spiderman-tech-stitch taping (I like to use legitimate medical terminology, obv) to close the incision (okay, to be fair about the Marvel references, we had just seen End Game when I wrote this and I was still reeling). Then I was discharged. I felt fine, the anxiety meds were still in effect but on the downslope of efficacy and the local anesthesia was still in effect. The tech scheduled my next appointment for four days later, which would be when we received the results. Photo below:
Just before we left the office, I took a deep breath… and I think I held it for the next 3 days.
Here’s the part where I slow down on the details, for this post at least. I have written a very long, emotionally raw post about the day we got my results and it’s obviously so much more than just “positive for cancer”; but, that’s what happened. The biopsied tissue was positive for DCIS – ductal carcinoma in situ (in my post from April 7th, I explained that DCIS stands for non-invasive cancer in a duct, “in situ” meaning in original site/place.)
Post biopsy/results reading info: the biopsy site remained covered with the dressing for about three to four days. I was instructed to let it come off on its own (said to take 3-5 days). The incision site wasn’t painful but the side of my breast and the tissue inside felt bruised and tender. (Photos below). It looks worse than it felt, to be fair, there was more trauma to the delicate tissue which is what makes it look scary; some people bruise worse than others, some hardly show any signs of trauma at all.
I was given three options for treatment of the DCIS in my left breast, which I also briefly listed in the aforementioned post, and explained what my choice of treatment was.
DCIS Treatment options:
A. Lumpectomy of mass/radiation/possible estrogen-blocking drugs; right/unaffected breast surveillance
B. Singular (Left Breast) Mastectomy, right/unaffected breast surveillance
C. Bi-lateral (double) Mastectomy (skin and nipple-sparing) << My treatment >>
The day we received the biopsy results, I was told my primary care doctor had already made an appointment for me with an oncologist surgeon for the next day. Things were moving quickly… (( if you’re new to my blog, I encourage you to read some blog posts from “A Little Story Called Life” – detailing the time between losing our first son/my life-saving surgery (here) to becoming pregnant via gestational surrogate and having our first child (here). It was 16 months from losing Robert William to being given Liam Jamison. We are not a sit-and-wait kind of couple, we’re more like a “gotta-move-and-lets-figure-it-out-along-the-way” kind of couple.)) Things began moving quickly from there and I will be forever grateful for that; for my team of doctors who came together, helped us make a plan, and held me up along the way.
So, that brings you up to date with where I currently am in the process: post-double-mastectomy, phase 1 of reconstruction (full mastectomy post and reconstruction phase 2 post to come). I don’t doubt my choice for a single second of any day. There are plenty of times that I look down (or in the mirror) and my heart sinks… I don’t recognize this part of my body anymore. I see the vertical scar on my abdomen that started the journey into my ‘second life’ over 7 years ago, then I see two foreign placeholders with (barely visible) scars of their own that signify this ‘third life’ that’s when I realize:
I have survived.
I am HEALTHY, the c-word is GONE, and I finally have peace of mind for all the days to come about the health of my breasts; those cysts will never worry me again, I will never again gasp when I (think) I feel an unfamiliar knot, and I will not dread aging into the “more susceptible to breast cancer” age category.
Thank you, God; You know my anxiety and You didn’t want that for me for the rest of my life. I prayed so many times for so many years for peace from the fears and it was given to me. I am a living example of answered prayers (and proof that they may not always be answered in the most convenient way).
He knew I could handle this journey into my ‘third life’ in order to live in PEACE… I am in awe of His mercy and grace every single day.