Amy is a 35 year-old woman raising two little boys, aged eight and four. Diagnosed with stage zero breast cancer at the age of thirty-two, she elected to have a double mastectomy with reconstruction. She talks about the loss of her cousin to Leukemia and how that impacted her decision to accelerate her end game through surgery. She advocates for gene testing as a way to make a more informed decision and offer information to family members going forward.
Hi, my name is Amy, and I will be 35 in December. I have two little boys; turning 8 and 4 this year I am very involved with my family company, which we make food products, and I'm here to talk to you about the last year and a half of my life with my journey through breast cancer.
I had one at 29 because... I had a mammogram at 29 because my cousin who was about two years older than I was passed away at age 29 from leukemia and she had two little boys, just like I do, and so I started taking as many preventative measures as I could at that age in order to try to escape any type of diagnosis like she did and experience anything like she did. I went in at 29. My mammogram came back clear. I went in again at 32 and it came back with micro-calcifications that needed biopsy and further investigation to determine if they were cancerous.
Most of my girlfriends who are my age, 20, 30, they still don't see the importance of getting mammograms and pushing their insurance company to cover them because they really think, well, you're such a rarity that it wouldn't happen to me. And I have to say that I absolutely feel that is as far from the truth as you can get because my cousin had leukemia, which is a form of cancer, at 27 years of age when she was pregnant is when they found it and she went through two grueling years of chemo and stem cell treatments and bone marrow transplants and every procedure you can think of, and unfortunately even though she went into remission she still lost the fight at age 29. And she had two boys just like I do and that really put the fear in me that maybe I need to be proactive in any area that I can. So other than just regular physicals and blood work and anything else that my normal internist would do, I opted to start going for mammograms.
Once I was diagnosed, the insurance company paid for the initial gene test, and what the BRCA1 test that I was told tests for are the most common mutations of breast cancers so it's essentially like putting spell check on your computer and it looks for misspelled words or missing words or any type of structural errors in your work. The second BRCA test is something I had to pay almost a $1000 for out of pocket, but I wanted to make sure that because the first test came back negative you can still test positive for the second test and if it was going to be a genetic issue I wanted to be able to give my family members the leg up on that and know that they might need to be getting testing or going through similar types of mammograms or genetic screening that I went through.
My first phone call was my internist who I've known for a long time. I consider her a family friend, like a mom, and my phone call to her was to ask where do I go from here, and her instructions were don't do anything; take a deep breath; I will put you in touch with someone who will be able to be your oncologist and your surgeon; give me a short amount of time and we'll take care of this. So she put me in touch with my doctor who was a breast surgeon specializing only in breast cancer and surgery, and she performed the option that I chose after meeting with her. Originally the options that the oncologist was going to present were a lumpectomy with radiation or a single-side mastectomy on the side that contained the cancer. After she spoke with my internist, who persuaded her to offer me a full bilateral mastectomy, which is both sides, that was the option I chose. She knows me just well enough to know that I would choose to just get rid of the problem and get on my way.
I feel more than fortunate and more than lucky that it was stage zero because at that point there's so many options that you have and at the same time there's less treatment you really need. I was not forced to take chemotherapy or radiation or any of the other treatments that other people have to do when it's a further-along stage, so I feel very blessed that it was stage zero, and at the same time I feel like there's so any options, it's almost overwhelming, because you really have any avenue you can choose because it has not spread anywhere else in your body.
My reasons for a mastectomy are very simple. 99% of it is I'm young, I'm a mom, I have kids, I need to keep up with my kids and the other part of it that I really found that applies to anyone with any kind of a cancer illness is you really have to do what works for you and no one can tell you that. They have good opinions; they come from good places in their hearts; but at the same time you have to do what you can sleep with at night, and for me obliterating the problem and never having to deal with that specific issue again was what I could sleep with at night.
The prep for the surgery was interesting. They come in with a bunch of magic markers and you feel a little bit like you're a drawing board and you have marks all over you and different colors for different surgeons. I had the oncologist performing one portion of the surgery. I had a plastic surgeon starting at the beginning with the reconstructive surgery at the same time and having everybody get their ducks in a row, and waiting for other surgeries that are bumping yours to later in the day is really nerve wracking. Once the surgery is done and you wake up it's a little bit of a relief knowing that the cancer part of it, technically, for me in my mind, was over.
I was in pain but nothing too unmanageable. It was actually more painful coming home from the biopsy than it was coming out of the mastectomy. I have a feeling the drugs that they give you to numb the pain do a lot for that, but at the same time I think mentally it was less scary because it was done; I had made my decision; the cancer was gone; and I think the mental aspect of it once that diminishes makes it a lot easier to cope with.
During the summer, after I had the mastectomy in March, I had to let everything heal for about three months, and once that was done I went in once a week every week for about eight or nine weeks to my plastic surgeon's office and they would inject a very large syringe full of saline into each implant that was already placed in my chest. They're actually called expanders and what that does it allows your chest muscles to stretch, your skin to stretch, and it gradually increases the breast size and then at the end of that they can remove the expanders and put in actual implants. So it's just a really slow gradual procedure, and it definitely is painful at the time and probably about I would say once I had the expanders filled with saline then it would be about a day of back muscle soreness and chest soreness, and then the next day I'd wake up and I'd be okay with a couple Advil, so it wasn't too invasive.
The surgery in September was probably about three to four weeks recovery time total, and part of that is because once you have the implants in, you have to really make sure that you don't have any infections or any problems and at one point I had to actually stay in bed for an entire week just to recover so the incision site could really heal properly.
The first option that I was given by my breast surgeon was called the DIEP, which is when they take the flap of skin from your abdominal area and they take the tissue and they literally reconnect the blood vessels and all the micro surgery areas of the tissue from your abdominal area to your breast area, and they can literally recreate your breast that way. Unfortunately, I've had two C-sections and so the tissue there is usually not viable even after one let alone two. One of them was an emergency C-section, in which case my doctor felt that it really would not be viable, so for that reason he chose to simply use the expanders and use the tissue that was there. The other issue is that the abdominal cavity only has so much tissue and skin, and when you have a double bilateral mastectomy it would take a lot of tissue for each side, so it was just better for me all around. It was my choice to just go ahead and use the implants rather than the
That one was tougher. It was using the abdominal skin that I did not use for the breast tissue. I actually used skin to recreate a nipple on one side because I had to lose one because that was where the cancer was directly behind, so he literally I had nothing there; it was just a complete suture right across the front of my breast, and he literally took abdominal tissue and made a circle and cut it up perfectly and attached it and pulled the skin through and it looks pretty close to the real thing, so I'm very impressed with what they can do when they really put their minds to it with surgery. The most bizarre part of it is just waking up and having absolutely nothing there.
The recovery process is a long road. It feels a lot longer when you’re there. It seems like a long time ago now; one of the most interesting aspects of it was my six-year old really needs to understand what you’re going through at the time. For him, you could come home every day from school and empty my drainage tubes the first couple of weeks and check in and see how I’m doing and look at the incision site on my arm where the tubes were and make sure everything was ok. He was ok with everything that was going on. Not being able to see me or not understanding that part would’ve made it really tough on him.
I would say it was two months before I really felt comfortable getting up and walking around once the tubes were out. It really took a good 4-6 weeks for me. The tubes were in for almost 3 weeks because my plastic surgeon decided to leave them in longer just to make sure there weren’t any infection issues and I think that after those came out the healing process sped up and it finally allowed me to feel I was getting back to quote on
The expanders are up very high. They look completely unnatural, and part of that is just because you have to go through the process of stretching out the skin, and even once the implants are put in, it still takes time for them to drop, just like if you have an augmentation versus reconstruction, so it takes time to settle and your skin still changes, your tissue changes, and the weight of the implants are a huge effect on that.
In the beginning, you have absolutely no feel in your breast at all. And now what I’ve noticed after about a year and a half after the first surgery is my nerve ends are reconnecting and they’re making new pathways. So I do have quite a bit of feeling in different areas. It actually is a good thing. It’s a personal decision; you have to be willing to not have that. But I’m happy some of that has come back at some point. You know if you touch one certain area, it will because of nerve endings re-routing if it goes to a different area on your chest. It’s just something you get used to. It’s like when you have a C-Section, where you have the numb feeling and the sensation from the C-Section but I wouldn’t have done it any differently because then something not so good would’ve happened with my kids, so it’s one of those kind of sacrifices you’re willing to give up for the end game.
I actually had my tubes tied rather than a full hysterectomy. Part of the reason for that is that in the past I have had problems with endometriosis when I was a lot younger and so for that I was on birth control pills and after cancer diagnosis you are not supposed to touch any type of hormones, supplements or any type of treatment ever if you can help it, you're not supposed to get pregnant for a minimum of five years. It's just because the hormones can eventually flare up anything that might be in your system that you might not even know about. My plastic surgeon explained it a little bit like kerosene. If there's kerosene somewhere, it's just kerosene until someone lights a match.
Talking with my parents about my diagnosis was difficult. Especially with my dad who I’m closest to since we work together every day. I can understand why their initial response would be: how do we fix this, how do we take care of this for you? I had to go through this journey on my own just to make sure it was something that I could live with and luckily they’re supporting and loving enough that they understand that they might have their own opinions as well.
My kids at the time were 6 and 2 and it was difficult having a 2-year old because he simply saw that mom wasn’t active 23 hours a day with him anymore and for my 6-year old it was interesting because he was more mechanically oriented; so for him; the idea, the concept for how I was being sick, as long as he could understand it and wrap his mind around it, he was a lot more forgiving and understanding with it and it made it a lot easier for him to deal with rather than just being scared and not knowing the outcome.
With my friends I had people who would come over and keep my company. One of my girlfriends taught me how to crochet. There were a lot of good friends that did a lot of good things that affected me in positive ways. With my children as far as school was concerned, we were absolutely blessed because as soon as I was diagnosed and had the mastectomy, they started a signup sheet and every 2 days we would have a teacher or parent show up with food for a couple of days for the whole family and it was just an amazing blessing that they did this on their own. The interesting thing that I found, though, is that going through this, the mastectomy and the initial diagnosis, is there is something for everybody that they can really can on board with and help you and support you and even be scared for you but as you go through the reconstructive process the other surgeries are not the same level of fear, not the same level of stress, so what I've noticed is that you have to ask people more for help at that point because they don't realize that you still might need a leg up on the situation.
For me the anniversary of being cancer free was the day after my surgery because at that point the cancer was gone and the reconstruction was starting and I just had to figure out where to go from there, so for me every March it's a little bit of a celebration because that's when it was done; that's when the heavy lifting was over and healing could begin.