Editor’s word: I first posted about discovering out I’m at excessive danger for breast most cancers in 2021. Here’s an replace on how UVA Cancer Center helps me shield my well being.
“Angle your body a little more to the left. This arm up. Now look this way over your shoulder.”
It wasn’t a photoshoot. It was my first mammogram after discovering out I used to be at excessive danger for breast most cancers. The imaging tech serving to me knew it was my first time and was actually useful in strolling me by way of it. My physician, Vanessa Gregg, MD, ordered the mammogram after I noticed her within the UVA Health High Risk Breast and Ovarian Cancer Clinic. I occurred to get it in October 2021, which was Breast Cancer Awareness Month.
Genetics play a job in about 10-15% of breast cancers and as much as 25% of ovarian cancers. “We focus on breast and ovarian cancers because they can sometimes be linked in families,” Gregg explains.
In my case, Gregg beneficial I rotate a mammogram and breast MRI each 6 months. That provides us the very best probability to seek out it early if I get breast most cancers. “The earlier cancer is found, the more likely a person is to survive,” she shares.
I couldn’t assist feeling some alarm after I bought referred to as again for extra photographs after my mammogram. The radiologist who learn my scans was reassuring and sort. She promised me her group would all the time err on the aspect of warning. They wished to be completely positive they discovered any most cancers, so they could name me again for extra photographs or a biopsy if there’s ever a query.
Six months later, probably the most difficult a part of my breast MRI was holding the awkward face-down place within the machine. I used to be relieved to get the all clear and grateful the UVA Cancer Center group was looking for me.
Breast Cancer in My Family
My dad, a retired basic surgeon, is fairly relaxed about well being points. He retains an “eh, it’s fine” outlook till he sees a compelling motive to be involved. So when he stated he was involved about my breast most cancers danger, I perked up.
My late grandmother had twice, in her early 50s and 60s. She additionally had endometrial most cancers, a most cancers within the lining of the uterus, in her 50s. Her sister died from breast most cancers in her 40s. My dad just lately discovered my half-sister additionally had breast most cancers, round age 40. He suspected breast most cancers may run in our household, placing me at increased danger. He inspired me to look into genetic counseling and genetic testing for most cancers.
I referred to as UVA Cancer Center and made an appointment to see a genetic counselor.
Going for Genetic Counseling
At my appointment, I’m nervous and undecided what to anticipate, however Thomas places me comfortable. She’s thorough, so I really feel assured we’re not going to overlook something.
First, we speak about my household historical past of most cancers. She attracts out my household tree, beginning with each units of grandparents. We listing everybody’s siblings and youngsters. We speak about whether or not every particular person has had any kind of most cancers, together with what variety they’d and the way previous they have been.
In my case, I do know of nobody in my mother’s massive prolonged household who has had most cancers. My dad is an solely baby and his prolonged household is small. So we solely learn about my grandmother and half-sister.
She asks if my half-sister had genetic testing and I can’t reply as a result of we’re not in contact. Thomas is unphased.
“You may assume your loved ones state of affairs is uncommon, however we work with every kind of household dynamics,” she says. “We’re very aware or not eager to create worse household communications or stress folks out unnecessarily. Ultimately it’s the household’s data and the way they select to share it’s as much as them.”
Thomas additionally asks me questions on components of my very own medical historical past that might have an effect on my danger.
She enters all the data into the Tyler-Cusick statistical mannequin, a profiler that weighs your whole danger components to inform you your private danger.
The outcomes say I’ve a 32% probability of getting breast most cancers in my lifetime. The common particular person with out my danger components has a ten% probability. That’s stunning to listen to.
Thomas tells me that my danger of growing breast most cancers within the subsequent decade is 3%, in comparison with 1% for somebody my age with common danger. That makes me really feel higher.
Genetic Testing for Cancer
Next, we speak about genetic testing. Many folks have heard of BRCA1 and BRCA2. But there are about 20 genes associated to breast most cancers danger we will take a look at for. About 10% of sufferers who get these assessments take a look at optimistic for a genetic mutation.
Thomas explains what optimistic or destructive outcomes will imply. Here’s what I didn’t anticipate: Even if I take a look at destructive for all of those genetic mutations, we’d nonetheless take into account me at excessive danger for breast most cancers based mostly on my household historical past.
The historical past tells us that one thing is inflicting extra folks in my household to get breast most cancers than regular. If I take a look at destructive, it means we haven’t found out precisely what that one thing is and how one can take a look at for it. We assume an unknown issue is inflicting extra breast most cancers in my household. I’m at increased danger as a result of I may need inherited it.
What if I take a look at optimistic and we determine what was responsible for the household historical past? We would use my household historical past and the take a look at outcomes to estimate my danger.
Why Do Genetic Testing for Cancer?
The largest motive for me to do genetic testing is that among the genetic mutations improve your danger for different varieties of most cancers. If I take a look at optimistic, I’ll must take steps to cut back my danger of getting these different cancers. One of those is ovarian most cancers. Unlike breast most cancers, we don’t have good screening assessments to seek out ovarian most cancers early. If I’m at increased danger, medical doctors may suggest I get my ovaries and fallopian tubes eliminated round age 40.
At the time of this appointment, I’m 37. I take into consideration the 2 main surgical procedures I’ve already had and the way a lot I don’t wish to undergo one other one.
“This is a lot of information to take in,” Thomas says. “How are you feeling?”
I pause for a deep breath and admit I really feel overwhelmed. But I’m actually grateful for the data. I’d fairly know, so I can do the whole lot I must do to stop most cancers.
Thomas jogs my memory this isn’t an emergency. I don’t have most cancers but. The profiler says I solely have a 3% probability of getting it within the subsequent decade. So we now have time to get the data, give it some thought, and make a plan.
Thomas doesn’t push me both manner on testing. I determine I wish to do it, nevertheless it’s completely as much as me.
“Having an appointment with me does not mean you have to go forward with testing,” she says. “Some people want to just come and hear the information. People sometimes feel like they need to be prepared for testing when all they actually need to be prepared for is to have a conversation.”
I am going all the way down to the lab. The phlebotomist takes a couple of vials of blood for the genetic testing and I’m on my manner.
Getting My Results
For the following three weeks, I strive to not be nervous. I get an e mail with my outcomes and Thomas additionally calls me to inform me the genetic testing all got here again destructive.
Because I’m nonetheless at excessive danger based mostly on the Tyler-Cusick mannequin, Thomas refers me to the high-risk most cancers and ovarian most cancers program at UVA Cancer Center. My physician there recommends I begin breast most cancers screenings early and do further screenings. Now I rotate getting a mammogram and breast MRI each six months.
I really feel a lot better figuring out what my danger is and doing one thing about it. If I do find yourself getting breast most cancers, I ought to discover out inside months of it growing.
“The whole point of doing genetics and high-risk screening is to allow us to be proactive about a risk as opposed to reactive about a problem,” Thomas says. “A lot of time, when we find cancers early on, they can be managed with surgery alone. You don’t have to go through something like chemo or radiation.”
I’m additionally grateful for the nuanced data I bought from Thomas, one thing you possibly can’t get from different varieties of healthcare suppliers or simply studying outcomes alone.
“We’re not only well-versed in genetics and genetic testing, but also overall risk assessment, so doing things like the Tyler-Cusick model,” Thomas says. “It’s also not specific to just one kind of cancer. We can look at the whole family history and make recommendations across the board for all types of cancer.”
Family History of Cancer?
See a genetic counselor to study extra about your private danger for most cancers.
Who Should Do Genetic Counseling?
Thomas recommends seeing a genetic counselor about your breast most cancers danger when you’ve got:
- One particular person in your loved ones who was identified with breast most cancers below age 45
- Two folks in your loved ones who have been identified with breast most cancers, particularly if one was below age 50
- Three folks in your loved ones who have been identified with breast most cancers
- Several folks in your loved ones with breast, ovarian, prostate, uterine, or pancreatic most cancers
Does Insurance Cover Genetic Counseling and Cancer Screenings?
My personal insurance coverage lined the price of my genetic counseling appointment and testing. This is true of most personal insurances, however not Medicare. My insurance coverage helps cowl the price of beneficial breast most cancers screenings.
UVA Health presents worth estimates for these and different providers. Some sufferers qualify for financial help based mostly on their revenue.