Protecting My Ovaries and Pancreas
Not long after I completed my Herceptin treatments in February of 2016, I began ovarian cancer screening. I didn’t have ovarian cancer, but I was told that being BRCA positive put me in the high risk category for getting it.
“On average, women with an altered BRCA1 gene have a 50 to 85 percent risk of developing breast cancer by age 70. Their risk of developing ovarian cancer is 40 to 60 percent by age 85.
A woman with cancer in one breast has a higher risk of developing cancer in the other breast. Twenty-five to 30 percent of those with a mutation may get a second breast cancer within ten years after their first incidence of breast cancer.
In both men and women, BRCA1 changes also increase the risk for certain other cancers. People with a BRCA1 mutation may get one or more cancers, or never be diagnosed with cancer.”
“Both men and women with a change in the BRCA2 gene are at increased risk for breast cancer. In women, the risks associated with a BRCA2 mutation appear to be about the same as those for BRCA1 mutations — a 50 to 85 percent risk of developing the disease by the age of 70. The risk for cancer of the ovary is also increased — between 16 and 27 percent by late age.
A man with a BRCA2 change has an increased risk for male breast cancer. In addition, men with mutations in BRCA2 have a higher risk for prostate cancer.
In both men and women with BRCA2 changes, the risk for pancreatic cancer and melanoma is also increased.”
Ovarian Cancer Risk Types include women with inherited risk due to known genetic mutations (relative risk greater than six times that of the general population)
This category includes woman with any of the following:
Presence of a BRCA1 or BRCA2 mutation. BRCA1 and BRCA2 are genes involved in cell growth, division, and repair of damage to DNA that occurs naturally during one’s lifetime. An altered, or mutated, BRCA1 or BRCA2 gene increases the likelihood that cancer will develop. The most common types of cancers associated with BRCA alterations are breast and ovarian cancer.
https://www.mskcc.org/cancer-care/types/ovarian/screening/screening-guidelines-ovarian
Every 3 months, I make an appointment at Northwestern to have an ultrasound as well as blood work for CA-125 (for more information go here ). This is all apart of the Northwestern’s Ovarian Cancer Early Detection & Prevention Program: A Specimen and Data Study.
As always the ultrasound tech asks me when I had my last period. I breathe in and out as I answer March 2015. Do they not have this in my chart yet? I haven’t had my period since my first round of chemotherapy. Then sometimes, I have the technician who is searching for my right ovary. Again on my chart it should say LARGE CYST REMOVED WITH RIGHT OVARY (when Filoppian tubes were removed).
After the ultrasound I meet with the team of doctors who run the screening and they go over a bunch of symptoms which I know are to rule out a possible case or cancer. The problem is that the symptoms are very subtle and I pretty much have most of them on a daily basis- feeling bloated, loss of appetite, gas, painful intercourse, constipation.
Common symptoms include:
General discomfort in the lower abdomen, including:
Feeling swollen or bloated
A loss of appetite or a feeling of fullness, even after a light meal
Gas, indigestion and nausea
Diarrhea or constipation
Frequent urination or urinary urgency
Feeling very tired all the time
Bleeding from the vagina or menstrual irregularities
Painful intercourse
Buildup of fluid around the lungs, which may cause shortness of breath
Usually the meeting with the doctor’s goes well. I’m usually told that I’m boring (which to them is a good thing). At first I didn’t want to be told I was boring, I was there because I was positive for the BRCA gene and nothing about my life regarding my health was boring. I lived at Northwestern and was constantly on edge about my next screening appointment. But after a few “you’re borings” came my way along with the doctor telling me that some women in the screening program had received diagnosis I took the “you’re boring” and ran!
One day though I wasn’t so boring. I had been told that I had a cyst on my ovary, but there wasn’t any concern. No concern was because being on tamoxifen can cause cysts on the ovaries. Oh JOY! This time though the cyst was on the large side. I was asked to make an appointment a few weeks later to come back in to make sure it hadn’t gotten larger or any other changes didn’t take place. Of course I’m going to think about this. Just the way I think about every pain and bump I feel in my body. I went back in for the ultrasounds and found out that there was no change and it again was most likely due to the tamoxifen.
So what’s with the tamoxifen making cysts on my ovaries? I don’t really know but I’m working on getting more information on it!
Unfortunately, there were women that were in the ovarian screening program over the past few years that have been diagnosed. Not that the doctors weren’t taking the program seriously before because they were, but now they were really taking matters into their own hands and having tough conversations with the patients. My conversations with them at the beginning led with the words “well I don’t know about being able to have my own family.” I know that with the tamoxifen I can’t get pregnant, but what if details change. Additionally, having ovaries removed is a really good thing for breast cancer prevention, however double edge sword for me! When the ovaries are removed it puts me at risk for heart disease and osteoporosis. These are two diseases that run in both sides of my family. Now what do I do? I’m either at risk for breast cancer recurrence or heart disease and/or osteoporosis ( I already am having yearly bone density tests and have been told I have osteopenia). We had decided on continuing with the tamoxifen and then having my ovaries taken out at 40. This would put me a little closer to menopause than having them taken out in my early 30s. When the doctors started diagnosing more ovarian cancer cases, the idea of having my Fallopian tubes removed was brought to my attention. If there is any ovarian cancer forming it will start in the tubes. Do you need the tubes to get pregnant? At this time we had already been working with the surrogacy agency and I had come to terms that I would most likely never carry a child and I was ok with it. (I mean I may not ever be fully OK with it, but right now my health was on the line). So...May 2018 a month before my daughter was born, I went and had my tubes taken out. Once again my hero (my husband) was right there with me to send me off to the operating table. My gynecologist greeted me that morning after again I tried giving a urine test to prove I wasn’t pregnant. Every time I have had to go in for egg retrieval and breast surgery I for some reason couldn’t go to the bathroom. They really need to remind me to drink a lot of water before these surgeries!
I slowly woke up in a room with my husband sitting next to me. I was offered some juice and graham crackers. My gynecologist came in to see how I was doing and review everything (again). I guess she had been in the room already, but I must have been completely out of it because I don’t remember any part of it. She showed me photos of what she removed with this tangerine sized cyst. I have no idea how that was in me, but it was 5 times the size of my tiny ovary. When she went in to remove the tubes she saw the cyst and was not comfortable with leaving it in me. That being said it came out with the right ovary. It couldn’t come alone. So I still have my left ovary. Removal day for that will be closer to 40 as of now.
Coloring was changed so the real coloring wasn’t in your face (it’s not exciting to look at). That large thing in the cyst!
Fast forward to 2019, the ovarian screen team shared with me that there are now studies that show having the BRCA gene puts you not just at risk for ovarian cancer but pancreatic. AWESOME! A friend of my sister had recently lost her life to pancreatic cancer and the mom to a very good friend of mine had just recently received a diagnosis. So now what would I do? An order was put in for an endocrinologist. I waited a little to make this appointment because the screening would involve yearly MRIs. I had a lot of questions about this. I didn’t wait too long though before I met with the endocrinologist. I was ready with lots of questions!
Basically there is normal risk and high risk according to the Northwestern screening team. I was at high risk - I had been diagnosed with breast cancer before 30, I had a family history of breast cancer and I was positive for the BRCA gene. Confirmed BRCA II and unconfirmed (but not ruling out BRCA I). The risk I have is 3 to 6 times the average person. The screening would start at 40 for those with a high risk, but due to the early diagnosis the doctor gave the go ahead to start with the yearly MRIs. For each MRI they would look at the pancreas and liver. If there were ever any abnormalities (aka a cyst) they would then continue with an ultrasound 6 months later and then MRI another 6 months later. If there was family history of pancreatic cancer I was told that the screening would be an every 6 month ultrasound and every 6 month MRI. Let’s hope no one in my long family history ever had pancreatic cancer.
As soon as this appointment ended I made an appointment for an MRI the following week. I made my way to the hospital, got changed and laid myself on the MRI table. I had a pillow under my head, headphones were put on my ears and I was sent off into the small dome. I am not great with small spaces, but was trying to be positive. I laid there with my eyes closed and when I opened I had a little panic. The only thing that helped was that when I looked back I could see the light. Thank goodness for some good ole’ 80s rock! In between the call outs to breathe in, breathe out, hold your breathe, I enjoyed some classics that calmed me.
The results came back fine which was great news. Now on to my 6 month oncology screening and 3 month ovarian screening. Living month to month! It's not easy and it's trying many times, but I’m grateful to be alive with opportunities so I’ll continue with the screenings as long as I can!
MRI day