IVF and PGT: What it's really like
Does anyone else feel like once you figure out one part of this crazy journey, you get introduced to something completely new and you’re like WTF?! That is how I feel on a daily basis when it comes to my genetic mutation. I can talk about my mastectomy all day long but that is just one part of what us high risk women have to worry about. Our skin, eyes, colon, pancreas, and don’t even get me started on our ovaries. We can let ALL of these things overwhelm us or we can choose to be excited/interested by them and try to learn as much as we can. I have really channeled that attitude and energy and it’s helped me a lot. Our mindsets really are EVERYTHING. So I have become a bit of a nerd when it comes to all of the innovations and options we have as high risk women - one of them being PGT (preimplantation genetic testing.)
I first heard about PGT while on one of the Breastie events. It came up while we were talking about family planning and potentially passing down our mutations to our children since we have a 50% chance of passing down our mutation. While we were talking about how it’s overwhelming enough to navigate our own mutations - the thought of passing it down to our children is even more heartbreaking. One of our Breasties confidently said, “well I KNOW my kids won’t have the mutation!”
WHAT!?! We didn’t understand… That’s when she told us all about PGT. Basically, with PGT done in conjunction with in vitro fertilization (IVF), we can screen our embryos to avoid passing on the BRCA mutation to our future babies and stop their inheritance of cancer. This is the process:
Embryos are produced from an IVF cycle. IVF is the process of fertilization by extracting eggs, retrieving a sperm sample, and then manually combining an egg and sperm in a laboratory dish. Freaking crazy!!
A few cells are carefully removed from the part of the embryo that will form the placenta.
Samples are set to the lab to be tested for genetic mutations
At the lab, they are able to inspect our Embryos and find out which ones have genetic mutations and which ones do not,
This enable you to choose to implant the embyros that do not have a genetic mutation
Your child will not carry the genetic mutation
So now that we all have a basic understanding of how PGT works, I want to introduce you to Jaclyn Jensen. She is an amazing Breastie who just finished the PGT process and is giving us all of the inside deets, what we should know, and the right questions to ask. AKA she is the best. She also runs our Chicago chapter so if you are in Chicago - you connect with her here and here!!
TELL US A LITTLE BIT ABOUT YOURSELF:
I have a strong family history of breast cancer, which has been linked to a BRCA2 gene mutation. I tested positive in 2005 and have done everything I can to prevent cancer, including a preventative double mastectomy in 2017. But what about preventing cancer for my family in the future?
DID YOU IMMEDIATELY KNOW THAT YOU WANTED TO DO IVF/PGT?
I initially struggled with whether I wanted to do IVF with Pre-Implantation Genetic Testing (to screen embryos for my BRCA2 mutation), or try to conceive naturally. Would I be losing something special by putting this intimate moment in a lab, instead of keeping it between my husband and I? Why go to such extreme measures over 1 thing, when there are still so many factors that are out of my control? Just because I can do something, does that mean I should? I don’t want my children to have to face the risk of cancer that I faced. To have to make life decisions with that fear weighing on them. Or for them to be another generation of my family with a cancer diagnosis.
HOW DID YOU DECIDE?
I honestly thought it would be a harder decision for my husband and I to make. I wondered if we would even agree. But when we opened up about our feelings and opinions, the decision came quickly and easily. Ultimately, we want to do everything in our power to make sure our children can be as healthy as possible.
TELL US ABOUT THE PROCESS
In the summer of 2018 we started IVF for PGT and freezing embryos. While we’re not planning for implantation yet, we wanted to start banking embryos now, to prepare for our future.
The IVF process is a little wild, with daily injections, early morning appointments for blood work and ultrasounds, and of course high hormones. The PGT process also takes an emotional toll, as you anxiously wait for results, and then some embryos “fail” the test. We are so grateful for the help and support we’ve received from our family and friends – especially the Breasties.
So far, we have 2 frozen embryo that does not carry the BRCA2 mutation. It is a little strange to be starting this frozen family, but we know it’s the right thing for us.
ROUGHLY, WHAT DO THE COSTS LOOK LIKE?
The costs can vary dramatically, depending on what your insurance covers. We were very fortunate to have great coverage for the IVF side of the process, but we're paying completely out of pocket for the PGT testing. For the PGT costs, keep in mind you can only do this step with embryos - they can't test eggs alone. We spent $3500 to create our "probe" (the test based specifically on our DNA and my mutation), and approximately $4500 per cycle of testing. Some people are lucky to get many unaffected embryos in one cycle, we were not. On the IVF side, with our insurance coverage, each cycle was approximately $1400. Then there are the freezing costs, which for us are about $1000 per year.
***IF YOU ARE WANT TO LOOK INTO YOUR OPTIONS FOR IVF/PGT BUT ARE WORRIED ABOUT THE COST - THERE IS AN AMAZING ORGANIZATION CALLED CHICK MISSION THAT PROVIDES MONETARY GRANTS FOR CANCER PATIENTS TO HELP WITH EGG FREEZING***
WERE THERE ANY SIDE EFFECTS?
I experienced a few side effects: heightened emotional sensitivity and mood swings, bloating and cramping hot flashes (like sleeping with ice packs in my bed in January lol), and kind of a flu-like crumminess after the retrieval. The side effects after the retrieval are a lot more mild if you stick to the recommended diet - high salt, high protein, and LOTS of electrolyte drinks.
WHAT ARE A FEW TIPS FOR ANYONE ABOUT TO START THE PROCESS?
For anyone about to start the process, I have a few tips:
1. Get super comfortable pants or dresses that are not tight across your stomach area. You will be bloated and tender!
2. Be prepared to be flexible with your schedule and activities. For example, once you start the stimulation medication, you have a period of about 4 weeks where you aren't supposed to exercise.
3. Go easy on yourself. In this process there is really not much you can control, and if a cycle doesn't yield as many eggs or embryos as you were hoping for, it can be really hard.
WHAT ARE SOME QUESTIONS WE SHOULD ASK BEFORE STARTING?
If you are thinking of doing this, there are some questions you'll want to ask:
1. For your IVF center: Do they have experience with women using IVF for PGT? Are they in your insurance network? What are their fees considering your insurance? Do they have a specific PGT lab they use, or are you free to choose your own? Where will they send your frozen eggs/embryos, or do you get to choose? What is their success rate for embryo transfers (once you're ready to get pregnant)?
2. For your PGT lab: Do they take insurance? Are they in network with your insurance? What are their fees? If they test in "batches" (same price for 1-12 embryos), can you do multiple egg retrievals in the same testing batch to be cost efficient? What is their test accuracy rate? If you have a more rare mutation, do they have experience with that mutation?
LAST PIECE OF ADVICE?
When it came time for me to start this process, I took a recommendation from a doctor in my ovarian cancer high risk screening program. I really trusted this doctor, and knew several other women who had used this IVF clinic, so I felt confident using them. They were also part of a hospital in my insurance network, so it was an affordable option. They did only offer one PGT lab choice, but it was local to the Chicago area which I liked, and it was the same lab my cousin from Utah used! She has a 9 year old son from the embryo they tested, so I figured I was in good hands.
This process has been longer and emotionally tougher than we expected. But I just keep thinking about the end result. The side effects are manageable and temporary.
If you have any questions about IVF or PGT or want to share you experience below, please do!
Remember that this is one Breastie’s personal experience and everyone is different. What is right for one person isn’t necessarily right for everyone. Make sure you talk to your team of doctors and find out what is best for you!