Ductal carcinoma in situ, Stage 1-2, Grade 1, HR+
Procedure: Double mastectomy with reconstruction
I have always been proactive when it came to doing a self-exam on my breasts and listening to the doctors when they said to check for or keep an eye on this or that due to my family medical history. All but a few members of my family has had cancer of some type. I lost both of my grandfathers at a young age due to this horrid disease. My maternal grandmother had colorectal cancer, and my paternal great grandmother was the one who had breast cancer.
I could remember as far back as possible her rolling up a sock into a neat little ball and gently tucking it into the left cup of her bra so it looked as though she had both breasts. She was never ashamed and would proudly smile at me when I would watch in awe of this strong woman. Little did I know I would be in her shoes when I was an adult.
September of 2014, I had felt a lump in my right breast. I knew I had very dense knotty breasts, but this time it didn’t feel like the rest. Of course I would ask my husband if he could feel it and without a doubt he did. He wanted me to get it checked at that time, but I was starting a new semester in school and I didn’t want to admit to myself that it was there. So I had made a deal with him to watch it and if something changed I would then go to the doctor.
November came and I ended up asking a friend to feel that area. I secretly was hoping she didn’t feel it, but she did. Again, I wanted to finish up the semester and promised her I would keep an eye on it. So like the good person in denial I was, I worked hard and picked up an independent study to keep my mind off of it.
When early January came, I had noticed it was larger. I had hurried to finish up the independent study, started the next semester, and went to the doctor by the middle of the month.
I laid there on the table of the doctor’s office as though it was another yearly check-up. I again hoped that she didn’t find it, nor would I tell her where it was. I looked up at her softly saying, “I think there may be something a little more than boob, but I want to see if you can find it. Let’s make it like an Easter egg hunt.”
My general practitioner found the lump with ease and said that she wanted to have a diagnostic mammogram done. “It may be nothing, but it never hurts to be sure,” she said. I called my insurance to find out where would be the cheapest place for me to have the diagnostic mammogram done, since I did know that the whole process could and would get expensive. They told me to go the Maine General in Augusta and even set up the appointment for me.
By this time, I could no longer lie to myself. I had that awful gut feeling that what I suspected all along was true, and I had to face this head on. I kept the “C” word out of the conversations with my husband and friends, and trudged through.
The day before my son’s 8th birthday, which was a Friday, I had my diagnostic mammogram. My right breast got more attention than my left, and I was able to get the technicians to talk a little. Both ladies were great and stayed very upbeat about it. Even when they put the lovely little Post-it flags that pointed exactly where the cancer was. I remember thinking that I couldn’t wait to get it out of my body.
Not long after that thought, I moved to the room where they would do the ultrasound and the technician came in. She would start with my left breast and took pictures and measurements of a couple of things. Then she moved to my right and took three times as many pictures, measurements, and time. At one-point half way through the setting, she left to go talk to the doctor. She came back, took a few more screenshots, and told me I would hear something on Monday. That the doctor wanted the weekend doctor to look at the slides. He wanted to make sure that they both saw the same thing before making a decision.
So, I went on my way, trying not to think about what’s going on. I blared the radio as loud as it would go, sang at the top of my lungs, and did all that I could to not think on my way back from Augusta. I didn’t want to wait until Monday to get the answer I had already known.
The birthday party kept me busy on Saturday, and homework and my husband kept my mind off everything on Sunday. Then Monday came, I got a call before classes for the day stating what I had already known, it was something of interest and I needed to have a biopsy. I quickly called my insurance again to tell them what the end verdict was. My case worker had already got the wheels in motion “just in case” and told me that no matter where I went it all was about the same. So I called my practitioner to set up an appointment at Eastern Maine Medical Center.
I got the appointment, which was three days before my birthday. My friend was kind enough to drive me there, since I was told that I couldn’t drive for 48 hours after the procedure. She took me there and stayed with me as much as she could. I changed into the little Johnny and we waited for the nurse to come in.
The nurse entered the room and preceded to tell me that before they would do the biopsy, they wanted to another diagnostic mammogram. She told me the doctors looked at the film from Maine General and that they said they were inconclusive.
At this point, I’m about to lose it. I authoritatively explained to her that I was there a biopsy. I already had the mammogram done, I’ve had two doctors look at it and come up with the same conclusion, I feel the lump and it has notably has grown, and if this is the case I don’t mind getting dressed and I will go back to Augusta and have the biopsy done because I don’t mind driving an hour out of my way.
She left to see what the doctors wanted to do, and surprisingly, ok not really, they were okay with just doing the biopsy since I can feel it and it’s grown. So I go to the room where they do the biopsy. My friend was able to go with me until they the procedure is actually being done. The whole time I was being prepped and even during the procedure the doctor that was doing the biopsy would say that she would be surprised if it was cancer, she didn’t think it was cancer because it was too mobile or it was too small, and she would give me a list of other things it could be, such as, having fibrocystic breasts.
The biopsy was over, and now I had to go to class. My friend drove me to school and carried my book bag to class. I sat in class, did my work, and then had a class mate take my back to the café so I could be a part of the Relay for Life kickoff party at Eastern Maine Community College. I had a team that I had dedicated to mine and my husband’s family that have battled cancer, plus I was, and still is, a part of the Phi Theta Kappa Honor Society, which hosts Relay.
I go to classes the next day with my friend in tow. This time she didn’t just drop off the book bag, she stuck around. At the end of the day, we went back to my house and she helped to keep my mind off what was at hand.
My husband, my son, and myself skied a little more and a little longer that Saturday. We never utter a word about what was happening in front of our son. I celebrated my birthday that Sunday and everyone who knew what I was going through made a conscious effort to keep me up beat.
Monday came and I was home with my son for President’s Day. I paced the house many times waiting on the phone to ring with the diagnosis. My boy went over to the neighbors to play and my husband called to see if the doctor called me yet. At that time I hadn’t heard anything. Then, about ten minutes later, I got the call that changed my life. I heard my practitioner say “You have cancer.” I cried, she told me if I had any questions to call, and we hung up. As soon as we hung up, I was on the phone calling my husband. All I could say is I have cancer and I need you to come home.
He quickly left work and was by my side. We talked and made decisions, and I called the insurance to tell them what was going on.
We sat down and a family meeting to do the hardest thing in my life, tell our son that his mommy has cancer. That I was strong and I would beat it because I was on top of it. He then looked at both of us and started crying. He didn’t want his momma to die like his Peepaw did because of cancer. It broke my heart and made me want to fight harder. In sweet innocent kid fashion, my son asked why I just don’t go down the street to where the sign is that says “Can Cancer” and have it taken care of. We explained that that’s a place for people to drop off their returnables so that the money can go to help with cancer. It’s not a place for momma to go get help. I was going to go to the best place to get the best treatment. Together we were going to be stronger.
I went to Cancer Care in Brewer, ME to talk to the breast surgeon there and then had a second opinion in Boston, which my insurance had set up for me. With everything laid out we looked at our options and had the pros and cons list out. We decided to do everything in Boston at Mass General.
With as fast as everything was going, and us doing everything in Boston, I left school at the end of February for the semester. It was a devastating blow, but it would be there when I’m done. Plus, I was determined to stay active in Phi Theta Kappa and in Relay for Life, which I did between surgeries and appointment.
My breast surgeon is in the one percentile in his field and already had my team of doctors together. All I had to do was show up for appointments. The breast surgeon and the oncologist both had their opinions on what to do, and both respected my decision. I had the option of a lumpectomy, a lateral mastectomy, or a double mastectomy, which I was very fortunate to have covered under insurance.
After talking to the oncologist, I found out through the results of the biopsy and the MRI, the cancer was stage 1 and grade 1. There was no chemotherapy or radiation in the future for me, unless it was in my lymph nodes. I had agreed to be in a Lymphedema study that was through her office to do what I felt I could to help.
In the midst of the appointments with the breast surgeon and the oncologist, I saw the plastic surgeon. He was adamant on me quitting smoking. To the point of him telling me that they will take my breast but he doesn’t have to give me new ones if I didn’t quit. Plus, I had to take a pee test for nicotine to prove that I quit. So the day of my first appointment with him I ended up quitting.
So now I had a decision to make, and in usual Crystal fashion, I ping ponged from decision to decision. I started to feel bipolar with all the back and forth on the decisions. One moment I would say take them both, they’re trying to kill me! The next I would say I want to keep them! I’ve watched them grow and they have been a part of me all of my life. Then came the day I had to buckle down and really make the decision. I looked at everything. How would I feel if they only took a third of my breast because I didn’t have much to begin with? Would I feel like less of a woman when both my breast was gone? Would I be ok only taking the one? How would I feel if the cancer every came back and I wasn’t proactive the first time around?
By this time, I had nicknamed my cancer Felicia, so I could say “Bye Felicia” when it was taken out of my body. I sat there with my husband and told that I could never forgive myself if “Felicia” came back and I didn’t take care of everything the first time. I seriously didn’t think I, nor my family, could handle the emotional agony if the cancer came back. To protect the family and myself from living in fear, my decision was to have a double mastectomy.
I went to meet with my breast surgeon to schedule my surgery. He agreed I went with the right decision, because I wouldn’t have been happy with how the lumpectomy would have looked. He again explained the procedure, what to expect the day of and after, and that the scheduling of surgery was 5-8 weeks out.
I sat down at the scheduler’s desk. She looked at dates when both surgeons would be doing surgeries in operating rooms next to each other and gave me the date of April 2nd. That was 15 days away, not 5 weeks. I stood still in shock and was excited and nervous at the same time. I quickly agreed to the date and went home to prepare, along with setting up the appointment to pee in a cup.
One week before the surgery we finally let the cat all the way out of the bag. I had posted on Facebook that I needed a recliner. I had been told my another survivor that it’s an easy place to sleep after surgeries, because you don’t have to make yourself sit up like you do in a bed.
We had an overwhelming response of support and shock from friends and even got a recliner. I got all of my stuff for post-surgery together, and plans for when I needed help with my son.
On the day of surgery, my husband, son, dad, and myself had arrived at the hospital early in the morning with great hope and excitement. Like all surgeries, there was the underlying bit of nervousness. They prepped me for surgery, and the pre-op people were there with me on the “Bye Felicia” bandwagon. After making a few alarms go off with my low heart rate, was taken up to the floor for my operation, the plastic surgeon meet us and marked me for expanders, and off the OR I went. I got in to the room and I was out.
That evening, I woke up to a very happy family and a very flat chest. I wasn’t able to get my expanders put in because apparently the smaller you are thinner your skin is, and plus where the cancer was located, they had to take extra skin so the plastic surgeon was afraid of the skin tearing. If the skin did tear, then it would have caused other problems.
The next morning, I was able to sit up in a chair and talk to everyone. My breast surgeon was happy to see where I was and offered to discharge me early. After being woke up all night with both surgeons’ residents, I was more than happy to take his offer!
The ride home sucked. Four hours in the car after surgery is not an ideal place to be. We got home and found solace in my recliner. I had pillows everywhere and perfectly placed blankets.
I healed up quite nicely. I was able to keep my nipples and they gave me a scare at one point. The skin around them turned black and all I could think is oh my God I killed them. Then, the skin fell off and cute little pink buttons showed through. I was so excited and relieved that I think I squeaked. It was miserable not lifting my arms, and the moment they told I could I did. Those were the exercised I was most happy to do.
While waiting on the expanders to be put in, I was able to get prosthetic breasts. It was neat to pop them into the pockets of the bra that was specially made for them the in morning, and at night safely tuck them back into their boxes in the drawer for another day.
On June 1st, I was back in surgery for the expanders. This time the ride home was much harder. I swear it’s the drains that made the ride so tough. After a few stops, we made it home. Again I was in my recliner and down for the count. The feeling of something under the skin was so odd. I actually had a little bit of a boob.
I called this the watch me grow phase, as we filled the expanders. Every trip to Boston we made it a family outing. Aquarium, the Freedom Trail, hanging out in the park, and showing family that came up to the sights were just a few things we did over the summer.
That fall I returned to school. I had planned to do the reconstruction surgery in December between semesters. I had worked my school schedule to where I could make it to doctor’s appointments on Wednesdays. My plastic surgeon different plans for me on both. On the surgery he wanted to do it before school started, but we were on vacation at that time, so we compromised and scheduled it for Friday, September 18th with the promise that I could have a rolling bag to take to classes and would be able to be in class that following Tuesday. The surgeon agreed and that is what we did. Then near the end of the semester, my plastic surgeon decided to change his clinical days to Tuesdays. But made an exception for me due to school.
Today, I’m a year from my last surgery, and feeling great. My plastic surgeon is ecstatic with the way the girls turned out so he is now writing a paper on the procedure with photos of my breasts as examples. I feel that they are now immortalized. I’m still on six month rotations with the doctors, and I’m in a young women’s study through Harvard Medical.
I feel as though there are times that I’m not a survivor, because I have friends who went through hell with chemo and/or radiation and I was lucky enough not to. However, on the other hand, I feel very fortunate to have been proactive in the getting to know my breasts. If it wasn’t for that I would have never been able to find and identify what was going on.