My story starts 10 years prior to my actual diagnosis of Ductal carcinoma in situ (DCIS).
At the time of my usual mammogram, calcifications were seen. A biopsy was done and I was diagnosed with lobular carcinoma in situ (LCIS).
The word “carcinoma” in this diagnosis is actually a misnomer. It’s not a cancer at all, but it does mean that I had cellular changes in my breast tissue that put me at risk for developing breast cancer in the future.
My medical oncologist prescribed tamoxifen daily for 5 years. The idea being that after the course of treatment, I would be protected from breast cancer for 10-15 years.
The first 5 years
At the time of this diagnosis, I had been an inpatient medical oncology nurse for 18 years so I completely understood the diagnosis and treatment. I did just as I was told and for 5 years I took the tamoxifen, experienced night sweats, and had to have endometrial biopsies every time I had unusual bleeding.
There came a point when I was ready to stop the medication, but my oncologist just gave me that look of “you really should know better,” not to mention my sister giving me that disappointing Catholic guilt look, so I finished my course of treatment.
Fast forward 10 years
Another routine mammogram showed more calcifications. By this time, I had already had 3 prior biopsies based on abnormal findings on mammograms and my oncologist said to have another. I saw him at work one morning and said “look, I just had a biopsy last year and it was normal, do I really need one now?” I remember this as though it happened yesterday, he said to me, “just have the biopsy.”
Reluctantly, I agreed.
A week or so after the biopsy, I get a call from the oncologist saying that this time it’s DCIS. At first I was more than a little ticked off because this was not supposed to happen. I had taken the tamoxifen to prevent this diagnosis. But I have to say that due to my experience as an oncology nurse, I knew that when my doctor said “if you’re going to get cancer, yours is the type you want,” he wasn’t just blowing smoke. There are some medical professionals who don’t even consider DCIS an actual cancer. It’s, for lack of a better term, “benign.” I was more concerned with how to tell my family.
The hard part came next
Telling my husband was not that hard. He had heard me complain about all kinds of ailments and, over the years, I had myself diagnosed with just about everything under the sun.
Nurses do that.
My husband will tell you that when you live with a nurse, you get used to that sort of thing so actually telling him was easy. I also knew the type of breast cancer I had was entirely curable.
But how to tell my sister?
She and I have always been very protective of each other and we share a love for one another that is immeasurable. At the time of my diagnosis, my youngest niece was studying abroad and the company my brother-in-law worked for was going through restructuring, so my sister had more than a few things on her mind. Now I’m going to add that her baby sister has cancer, no matter how curable it might be, into that mess. Really?!
My sister, her kids (my nieces and nephews), and I are extremely close and I had actually considered not telling them at all… but that wouldn’t have been right at all. I picked a day when we were all together. My niece had just gotten back from Italy and we were enjoying listening to her as she shared her experience with us. It was a great afternoon and hard to figure out just when to tell them.
Do I tell everyone at once? Just my sister and let her tell everybody else? I really didn’t have a plan.
I do believe it was the grace of God that gave me the strength and inspiration of how to proceed. I certainly didn’t want to put a damper on the day. So, at one point when my sister, brother-in-law and the kids were all in the kitchen I took a deep breath and told them. It turned out to be much easier than I originally thought. I used the example of my sister-in-law’s experience with endometrial cancer a year or so prior. Her diagnosis was also very curable and she’s fine so I just told everyone that I had a very similar situation, except it was with my breast.
I basically just stated the facts. Yes, I had cancer, it was curable, and I just had to decide which treatment option to choose.
My sister immediately went into “big sister mode.” She told me that she would come with me to all my appointments if I wanted, making sure that my husband wouldn’t mind which he certainly didn’t mind.
He was extremely supportive, but he really didn’t want to hear all the medical terms or the specifics. He was perfectly happy with me just giving him the nut shell version of the options.
Deciding among treatment options wasn’t easy
I always thought that if the time came when I had to make this kind of decision it would be a no brainer; That a mastectomy would just be the way to go. As it turned out, that decision was harder than I expected. It would include at least two surgeries and all the potential risks that go with them. In the end, I decided on a bilateral mastectomy with reconstruction. It seemed that with my history this was the best way to prevent any breast cancer from coming back. That, indeed, is a no brainer!
I didn’t let it stop me
Once the decision was made and the surgery date set, I just went about my usual day to day routine. I did, however, have a burst of energy a week or so before surgery and deep cleaned my entire house. If I was going to have to stay somewhere to recuperate from extensive surgery, it would be in a very clean house.
One of my dearest memories of this whole debacle was when my youngest nephew asked if he could come to my house for a visit the day before my surgery date. Of course I said yes and we had a really nice evening. Light conversation, a good meal, and just an overall really good time.
I think back to that evening often, and how incredibly brave he was, in fact, how brave my entire family was in being so supportive of me. What I’m trying to say here is that I believe this was harder on my family than it was on me. It had to have been frightening for them to have someone they love dearly go through cancer surgery. All that waiting and then seeing me bandaged up and all loopy after anesthesia.
I slept through the hardest part. They did the worrying, praying, and all the stuff that goes with having a family member being sick. I know if I was any one of them, I’d be scared out of my mind.
My support system was my everything
I’m very fortunate to have the phenomenal support of family and friends. Everyone pitched in as I recuperated. My house was kept clean by my sister and a friend who hired a cleaning lady for me, my oldest nephew mowed the lawn and mulched the leaves, and the kids all texted me frequently… technology is a wonderful thing.
When my husband went back to work, my brother-in-law came over in the morning to make sure I had my coffee and that I was alright. It felt good to let people help. It was equally important that they didn’t nag me. It was just the right amount of help and being left alone.
Don’t be afraid to speak your mind
It isn’t easy to tell well-meaning people that you need time alone but if they really want what’s best for you, they’ll understand. Just be honest. I tell my patients all the time that it’s okay to ask for help, and if you can be as specific as possible. It’s also okay to tell them there will be times when you need to be left alone. If you find that hard to do, one of my favorite things to say is, “I know how caring you are, so I’m sure you’ll understand when I say I really need time on my own.”
Folks can’t argue with that.
Try to detect cancer early on
As I’ve alluded to, I really don’t consider myself a cancer survivor.
I had surgery, that’s it.
Cancer gone. No chemo and no radiation, so I can only speak as an oncology nurse.
Those people who have to have real treatments are the survivors. Chemotherapy has come a long way over the years, but it can still be brutal. The course of treatment will end, the side effects will go away, your hair will grow back… and you’ll be cancer free! It’s okay to allow yourself to be sad or angry from time to time but it’s just as important to have a positive outlook and know you’ll be fine.
There’s one last thing I would like to say…
As important as cancer research is in finding a cure, it’s equally, if not more, important to have cancer screenings. Not just for breast cancer but for colon cancer, prostate cancer, skin cancer, as well as any others.
PLEASE follow the American Cancer Society recommendations for cancer screening! Early detection can save your life!