Risk Reducing Not Risk Eliminating
You may have heard of women having preventive breast surgery otherwise known as a prophylactic mastectomy, the removal of the breast in the absence of malignant disease. Women are at high risk of developing breast cancer, either due to a family history or presence of a gene mutation including BRCA1, BRCA2, TP53, PTEN or PALB2. What about a Prophylactic salpingo-oophorectomy? It’s a mouthful, but it’s the removal of clinically normal ovaries at the time of hysterectomy for benign lesions to reduce the risk of ovarian and breast cancer in the future.
About 1.2% of women in the general population will develop ovarian cancer sometime during their lives (1). By contrast, 39%–44% of women who inherit a harmful BRCA1 variant and 11%–17% of women who inherit a harmful BRCA2 variant will develop ovarian cancer by 70–80 years of age (2–4)
Since my diagnosis of breast cancer in 2015, I have been keeping an eye on my ovaries through an ovarian cancer prevention program through Northwestern. It’s one of the only programs of its kind monitoring patients every 3 months with an ultrasound and CA125 blood test. After monitoring my health for a few years and having the painful discussions about fertility and the possibilities of conceiving a child naturally, I realized that in order to be healthy and around for any children, I would choose to have an oophorectomy. I wasn’t completely ready to remove my ovaries because I was told they were functioning and providing the estrogen I needed to keep my bones and heart strong. I also wasn’t ready to remove my uterus because who knows maybe one day my lining would be thick enough or I’d be ready to stop taking the daily tamoxifen medication to carry a child. My team of doctors shared that
Recent research indicates that the most common type of ovarian cancer (high-grade serous carcinoma or epithelial) may actually begin as fallopian tube cancer. The cancer develops at the end of a fallopian tube where eggs enter from an ovary. It then spreads to the surface of the ovary.
My daughter who we were conceiving via surrogate was going to be born in June of 2018 so before she arrived, I had my surgery in May so that I was fully healed and ready to hold her in my arms. The ultrasounds and CA 125 tests continued every 3 months in addition to the tamoxifen that I had been taking since December of 2015, 10 months after my diagnosis and the every 6 month follow up appointments with my oncologist. It continued to be in the back of my head, the idea of moving up my hysterectomy surgery. When I first met with the team of doctors that oversaw the ovarian prevention program, we talked about monitoring until I was 40 and then discussing the removal of my ovaries. This discussion would change after I had my first surgery.
Each ultrasound usually showed a cyst, each varying in size. If a cyst was on the right ovary at one appointment, the next it would be on the left. Most of the time one of the doctors would label me as being boring. Which was a good thing in this case. It wasn’t uncommon to see cysts, especially since I was on tamoxifen, a selective estrogen receptor modulator used to prevent breast cancer in women and treat breast cancer in women and men. The discussion to consider moving up my surgery was something new. Doctor’s were seeing more patients in the study coming in for their ultrasounds and CA125 tests to discover cancer cells. Patients weren’t “so boring” anymore and it started to change the narrative. When I had my oophorectomy, my gynecologist ended up removing my right ovary due to a clementine sized cyst that she felt should not be left. After surgery they showed me the size of my teeny tiny ovary and this huge mass next to it. I’m not sure how it was in me, but I’m glad it was taken out.
The discussions I had with my oncologist and husband started to shift as well. We were trying to grow our family. Would I be able to carry a child? Was I ready to stop taking my medication to get my body ready for a pregnancy? I went through testing only to find out that my lining was too thin and going through the estrogen of being pregnant for me wasn’t worth it considering my estrogen positive breast cancer. It was time to lessen my chances.
I was prepared for the 5 scars that would go across my belly. I was prepared for the 8 weeks of recovery time. I was prepared for the team of doctors coming in to get me ready for surgery. However, there were many things that I was not prepared for and that was for after surgery and recovery. Well and laying in the hospital bed and being told I was not only having my ovaries and uterus removed, but also my cervix. I was told that it was best to do it all together. It would have been nice to know this before laying in the bed and having the IV stuck in my arm!
The only people that can help you get through what is to come after a hysterectomy are those who have had one and are open to talking about it. Our amazing family photographer was diagnosed with ovarian cancer and she was one of the best resources for me. She had a hysterectomy and shared what she went through and was going through since the surgery. Her one concern before surgery was the side effect of menopause and looking older. Was she going to look like she was 70 the day after surgery she told me was something that really bothered her. What? Was I going to look older now too? No one talked to me about this! Wait, no one talked to me about any side effects after this surgery. I mean I knew that it would put me into menopause, but what did this mean? I was so focused on preparing the next 8 weeks for my daughter to be watched, taken to school and cared for, scheduling play dates and who was coming in to help. I never sat down to think about what it was going to be like after those 8 weeks were over and I had to get out of bed and function. I didn’t think to ask what I was going to feel like inside after surgery. I didn’t ask about menopause and what it does to your body. My mind was focused on surgery and family. Here’s a list of symptoms of menopause.
Irregular periods
Vaginal dryness
Hot flashes
Chills
Night sweats
Sleep problems
Mood changes
Weight gain and slowed metabolism
Thinning hair and dry skin
Loss of breast fullness
Unfortunately I haven’t had a cycle since my first round of chemotherapy so I cannot speak to irregular periods and well I don’t have breasts so breast fullness isn’t something I can relate to either. The rest of the bullets are absolutely, YES! The crazy thing is other than the weight gain, I had been experiencing all of these since chemotherapy. Hot flashes definitely happen. I’m on an anxiety medication -effexor- that actually helps with the hot flashes, but menopause definitely increases these flashes. The night sweats and chills, well these are real. Did you know that the night sweats are hot flashes that happen at night? Who knew? Mood change, well I guess it depends on who you ask. I like to think I’m a pleasant person to be around, but I can definitely be moody for sure. Is it the menopause or just life, I don’t really know. The one bullet that has made me most uncomfortable is the weight gain. I wasn’t able to work out for 10 weeks and it took time to get back into building back the core that I had finally built back up after treatment. Also, my exercise had to change a little because I have osteopenia. Again, chemotherapy changed my bone density, osteoporosis runs in my family, but not having my ovaries removed my production of estrogen which keeps your bones thick and healthy. Weight bearing exercises were recommended and less yoga moves. This was not great news, but I’m working on how I can do a little of both!
Eight weeks came and went. By this time I was pretty antsy and now I was slowly making more moves. I was told I wasn’t supposed to lift more than 10 pounds, but soon I was immediately thrown into it all including holding my 35 pound daughter, lifting and throwing out trash and lifting groceries. I had my time to heal and now it was back to everyday life. Five days later though I started to feel these very sharp pains near the incision spots and even on them. What was this? I experienced this after my double mastectomy. It must be the scar tissue or the nerves, but should I be feeling this now? Also it seemed like my stitches were dissolving but in some incisions there were still short “wire-like” pieces sticking out. The one was in an incision that had a scab and the other was painful. If I pushed on it I got a really sharp pain. It was now May and I started feeling this soreness and pain on the incision site on the left side of my body. I felt these jolts randomly and they made me uncomfortable. I reached out to my doctor and I was told that it sounded like scar tissue located where the instruments went in for my laparoscopic sites. She recommended scar massage. This was great information to have now, but what about weeks ago. It would have been good to know the possibilities of this happening instead of me starting to worry.
Out of respect for my husband I won’t share too much but I do think this part is very important for women and men to understand with a cancer diagnosis, going through chemotherapy and having surgery whether it’s to remove a cancerous tumor or preventative. The word intimacy begins to have a whole new meaning. All that I will say is that libido and comfort changes. It is an awkward conversation with a partner, a doctor or even when starting a relationship, but we are human and it’s how we are created and how we show love so it’s time we talk about it a little more. I was already on anxiety medication which lowers lobido, but then chemotherapy comes and just takes it all away. What I wish was addressed more when you are told about treatment and surgery is that there are other ways than just trying every lubrication out there. There is a department that unfortunately isn’t at every hospital, but one that I actually learned about from my primary care doctor and that is Northwestern Medicine Center for Sexual Medicine and Menopause. After an oncologist treats, a woman should be sent to a department like this, in my opinion or be referred to a pelvic floor specialist. There is so much that we as women don’t know about our own bodies and then we are put through the ringer and just given a list of lubricants to try. This not only can make us question our bodies even more regarding why products aren’t working, but wonder if we ever will be able to satisfy or feel pleasure. My hope is that one day there are more departments like this that are able to talk to women and men who have been through cancer and have had surgeries as well as that gynecologists and oncologists learn more about the alternative routes that can be explored so that one may have intimate relationships.
At my last ovarian prevention appointment I was told that I was still going to need to check in once a year with the program. I was very curious to hear why. I was working on eating healthier, creating a workout plan and I had the preventative surgery. The words I heard were “ a hysterectomy was risk reducing not risk eliminating, I still had my ovarian lining.” It’s never over like everyone thinks it is. I will live life day by day and enjoy every moment, but what others see on the outside isn’t always what I’m feeling on the inside.
Stay tuned for more about my cancer prevention journey this Fall shared in Cancer Wellness Magazine!