My grandmother (maternal) was diagnosed with breast cancer. It was unilateral. She chose a unilateral mastectomy, and has been cancer free since.
In 2019 my aunt (maternal) was diagnosed with unilateral stage 1A, breast cancer at age 44. She had a double mastectomy with sentinel lymph node removal, and chemo.
They recommend starting your mammography life between 40-50 if you are at normal risk. They, however, recommend that you start screening 10 years younger than your relatives age at diagnosis. As my grandmother was older when she was diagnosed, her diagnosis didn't actually change that plan for me. My aunt being 44 at diagnosis meant I needed to start at 34. Which actually was the year she was diagnosis.
As a human, you always think "that can't happen to me," and with my preexisting medical conditions (that were still new at that time,) I couldn't imagine, or really cope with the idea that breast cancer could be on the horizon for me. So, I didn't start screening until the end of the following year. My first screening was normal. My breast tissue was dense but otherwise healthy. At that time I decided that with all my other (quite serious) medical conditions, I could not handle the looming threat of breast cancer. One of my medical conditions, acromegaly, puts me at even higher risk for tumor growth. So I set up an appointment with a breast surgeon (Dr. Oyague.) At the time, with all my factors (except acromegaly, as it's so rare, they don't calculate for it) I was only at a 13% lifetime risk. The breast surgeon would not even entertain the idea of giving me a prophylactic mastectomy under 20% risk. Because she was the only breast surgeon on staff and I couldn't afford a mastectomy out of pocket, I was stuck with her personal decision on how I handled my body. Although I was advocating for the mastectomy I had to live by someone elses personal rules for my life . The next year my mammogram showed an abnormality in my right breast, they were classified as microcalcifications. We scheduled my biopsy, which determined that they were benign. I went about my life trying to deal with all my other issues and before I knew it another year had gone by. I skated through my next mammogram with no changes. All the while having surgeries, procedures, and testings for numerous different medical problems, and working full time while temporarily living as a single mother.
My fourth mammogram was scheduled near the end of December 2023. My personal life was somewhat starting to normalize, but medical issues were fluctuating. I had been told that year that I may need another brain surgery. MRI due in March 2024. My mammogram then showed new abnormalities in the bottom third of my left breast. At that moment I decided that I couldn't keep playing the screening game. I had to take control of the things in my life that I could control. I scheduled my next biopsy and immediately contacted my primary care to get another consultation with the breast surgeon (Dr. Oyague, again!) When I received her reply it only said that the breast surgeon decided she wouldn't see me until we got the results of the biopsy. I retorted with "just put the referral in and I will schedule the consultation for after the biopsy is concluded." Only to be ignored.
Considering all of my past medical experiences I was unusually nervous about this biopsy. When I was finally called back, I learned that I was to be sitting up through the procedure. It took 6 tries to get me positioned correctly. The fifth position they tried, they thought was perfect and numbed the area. Then scanned again to be sure, and the fluid has obscured the area. So I was repositioned and numbed in a new place. The biopsy needle went in and I felt.... something, I couldn't tell it it was just pressure (which is normal) or pain. Once the biopsy vacuum was placed, I started to get dizzy and lightheaded. When I decided it wasn't going to pass I let the team know. Everything was paused as they tried to get me back to normal. The feeling still wasn't passing and the vacuum was still in my breast. I told them just to finish. One person stayed by my side trying to keep me from passing out and everyone else went back to work. The cuts proved that I had felt pain and I very much was not numb all the way. I felt every cut. The process was changed slightly to get me done faster but the biopsy was obtained, and provided ample specimen for testing.
Two days later, on a day where everything in my life was already on fire. The Dr. that performed the biopsy called me. He said "I have good news, but not great news." WTF does that even mean? Apparently medically that means "you have precancerous lesions in your breast, but that means it's not actually cancer, yet! He continued with "I have already put in the consult for the breast surgeon.... that's right Dr. Oyague. The anti-prohylactic doctor.
The fact that I had to have a second biopsy had raised my lifetime risk to 15%. The diagnosis of ADH (Atypical Ductal Hyperplasia) raised my lifetime risk to 38.5%. As i waited the almost week to see the dreaded tyrant breast surgeon I composed a speech. I would NOT be ignored again. This is my life, my body, my DESISION. Her job is breast surgeon, she needs to perform the surgery or I was going to find someone that would.... she is 100% replaceable in my life, but I am not! I was told the first line treatment would be a lumpectomy. Where they would cut me open, remove the tissue in that area, and removed zero percent of my chance to develop cancer. So I'd be disfigured and scarred but still be at 38.5% lifetime risk of breast cancer. 38.5% risk of chemo, radiation, a mastectomy, and death! I was done with the rules and the steps and whatever made Dr's feel better about themselves at the end of the day.
When I got to the office I was first put in a room with a student.... where my emotional shutdown began. Thankfully my husband took over. Explained that we were not here to talk about "options" we were here to start the process of the mastectomy. When the student stepped out to get Dr. Oyague we could hear them talking in the hallway as he gave the Dr the rundown of what had been discussed. We heard her tell him that that was not the process and the "correct next step was lumpectomy." My defenses went up! She came in and started trying to convince us that the lumpectomy was the "best" solution. I guess her day off was more important than my decision for the rest of my life. When I told her the decision was made and that she could do the surgery or someone else would. She got defensive. "This was a group decision " apparently it's not MY body. It's a "group" body. Finally she agreed to talk about a possible mastectomy. But continued to try to convince me that it was a bad idea, and throw every possible negative aspect at me. Which I had throughly researched in the past 3 years. She repeatedly stated "IF we" choose to do the mastectomy. At the end of the appointment she (just then) decided to calculate my new risk factor. Only after seeing the number did she start to go over the steps necessary to get the mastectomy process rolling.
One of her next steps was that I get genetic testing, which I am not against. I specifically asked her in the appointment if the results were necessary to do the surgery. She said no. On the drive home, (I live over an hour from the clinic) I got a call from her coordinating nurse. She informed me that the tentative date for the surgery had been moved a month further out than previously stated, and that the Dr stated that the genetic testing results would need to be back before the surgery, and that the testing was necessary. So the race was on. I had to wait for the referral to go through, then wait for the physical papers to show up in the mail. I had to fill out the 10 page packet about the medical history of every single person in my family, (I actually ran out of lines for this.) Then I had to get those paper forms to the oncology department. When I tried to fax them it kept failing, so I had to take them to the clinic and hand them to the nurse. She took 3 days to put them in the computer. I waited 3 more days and started making phone calls as my surgery date was creeping up faster and faster. I finally got a hold of the oncology nurse. The soonest they could get me in was the next month. Just a little over 3 weeks before the scheduled surgery date. Getting the labs drawn and results back that quickly was cutting it close. She then informed me that not only is it illegal to make some one do genetic testing in order to get treatment, but that I would have to qualify to even get the testing approved. I then called and spoke to the coordinating nurse for the surgery and had her restate that the genetic testing was imperative to getting the surgery. I lost it. I already wasn't happy with the way I was talked to in the appointment. Now someone is putting potentially unattainable goals in the way of my surgery.
I was then fired by the breast surgeon. All because her nurse was talking without knowing what she was talking about.
Today I met my new breast surgeon. I was absolutely beside myself. Everytime I thought about having to advocate for myself and fight, what had felt to be an uphill battle, the tears started pooling up. I walked into the appointment with my husband and aunt. Before the doctor got into the room my husband had to leave to get to work. When Dr. Colton came in, she explained her process and the steps of how she would like to do the appointment. She did her exam, and went over my imaging. She then pulled out a paper with pictures. She explained exactly what was going on inside my breasts. On the bottom left of this paper was a place to list treatment plans, and on the right corner was a place for my questions for her. When she started with treatment options she talked about the process of just removing the abnormal cells. When my aunt saw me getting upset she pulled out the notes I had prepared for the appointment. (It's very important that you prepare for your appointments and make sure everyone that goes with you knows your thoughts, goals and questions. Being in these positions can be very frazzling) Dr. Colton read every word. She said "bilateral mastectomy with recon, and nipple sparing. Oh, we can do that." And as quickly as that she went to her sheet and scribbled out the lumpectomy plan. She then started talking about the urgency. This was a sooner rather than later deal. The longer it sits the longer we give it to change.
I was finally being heard, and seen as a person.
Before I could get to my car, the MA had called to get me in to see plastic surgery, that day. I, of course, called work and let them know I would be even later than planned and headed back into the building. Not only was I getting this surgery with some who I could trust to be on my side, but it was going to be happening sooner than expected.
The plastic surgeon explained every aspect. He assured me that reconstruction at the time of the mastectomy was absolutely going to happen.
To make this life altering decision as positive as the outcome will be. I am planning! I have a mastectomy (boob-voyage) party planned. I am going to do a breast cast, and a body painting. I will be posting pictures as I complete these projects. I am also trying to bring awareness by adding as much content on Pintrest as possible.
I went to my genetic counseling appointment and was told that because it wasn't actually a cancer diagnosis, I did not qualify for genetic testing.
My Boob-voyage (mastectomy) party was so very fun. We played* "Pin the Boobs on the Previvor ," Bra Pong," "Boobs or Butts," and "Don't Say." There was also a little photobooth set up.
About 2 days before my surgery date, I set up my space. I claimed half the couch. Set up my wedge pillow, relocated a 3 teir shelf next to the couch. It's very important that everything you think you might need a lot, be as close to your core as possible as reaching won't be a thing. When packing for the hospital I highly recommend a deck of cards. Card games can be paused when medical staff come in, and be restarted just as easily. Electronic games usually have some sort of timer.
Here is the link to my Amazon Mastectomy wish list. I have updated it to the things I used and things purchased after:
https://www.amazon.com/hz/wishlist/ls/3GYYYJKNWAOUB?ref_=wl_share
Here is the link to my Amazon Boob-voyage wish list.
https://www.amazon.com/hz/wishlist/ls/2Q45LTYHH4YV9?ref_=wl_share
*"Don't Say" -Everyone got 2 mardi gras bead necklaces when they arrived, and were shown a list of words they couldn't say. If another party goer heard you say one, they could steal a necklace. The person with the most necklaces at the end of the party won.
*"Boobs or Butts" -Everyone got a printout with 12 photos of cleavage, each person must decide if it's a picture of boobs or of a butt.
https://www.etsy.com/listing/1037925819/boobs-or-butts-game-with-answer-key
*"Pin the Boobs on the Previvor " -Same concept as pin the tail on the donkey. A poster with the shape of a woman is hung and each player is given a set of boobs. Ours were a variety of things like; coconuts, bongos, maracas, knockers, sea shells, and different seta of bras.
*"Bra Pong" -A board with varying size bras attached. Smallest worth the most points and largest the least. Each player gets 3 ping pong balls, and take turns.