LJ Idol - The path is made by walking
Aug. 17th, 2024 06:37 pmI always thought I had such nice breasts. They were one of my favorite body parts, and I tried to treat them well. So why the fuck were they trying to kill me?
And I’m not saying there’s ever a good time to be diagnosed with cancer, but my cancer couldn’t have picked a worse time. My husband and I had just agreed to start trying for a baby, something I have dreamed of ever since I was a little girl. I have always wanted to be a mother more than anything else in the world, and finally, at 38, I thought I was going to get my chance. I was preparing to get the IUD removed when I found the lump in my breast.
I cursed every deity I could think of. I cursed my body. Why must it be broken? I cursed all the choices I had made up to that point, everything that had delayed me having a child sooner. But that’s the thing with life, you have to deal with the cards you’re dealt. And in my case, instead of a baby, I got a tumor.
I can recite my diagnosis just as easily I can my name or birthdate - stage 1, grade 3, hormone positive, her2 negative invasive ductal carcinoma. To most of you, that means very little. To me, it felt like the end of my dreams. Especially the hormone positive part because standard treatment for that type of cancer involves kicking your body into early menopause and blocking any sources of estrogen, since my cancer used it as fuel to grow. Most people seem to think that cancer treatment ends after surgery, chemo and radiation, but that’s not true in my case. Most hormone therapy protocols last between five and ten years.
I didn’t have five to ten years, I was in my late 30s already.
Hormone therapy wasn’t the only beast I had to deal with, I had to take it one step at a time. Chemo has one job, and that’s to destroy cells. It targets cells that are dividing quickly, like cancer cells, but oocytes also fall into that category. There are medicines which may - or may not - help prevent the eggs to be damaged, but there’s simply not enough data to know for sure if it works.
I did it anyway. Why not?
I also did a quick egg retrieval prior to starting chemo, and we were able to freeze some eggs and embryos. They expected five or six eggs, but they were able to retrieve nineteen. Not all nineteen were able to be frozen, however, but it’s a good number. A hopeful number.
During all of this, my brain went to a very dark place. The girl who used to fear death more than anything else… well, faced with the possibility that I might never get to have kids and all the crushing weight of a life that didn’t feel like my own, I remember thinking, “Is my life worth living if I can’t have kids? Maybe I shouldn’t fight… Maybe I should give up.”
My brain apparently wanted to kill me too, but later, I found out that a common nausea medication given during chemo can cause severe drops in serotonin, so hopefully that explains those thoughts of self cancellation.
Though I worry there’s some truth to those fears. I’ve always struggled with taking life step-by-step. I’ve always wanted it to go exactly as I had planned, and those plans included having kids one day. The very notion that my life might take a different path made me anxious and uncomfortable.
Which is why I did everything I could to give myself some hope.
And there is hope. There’s a study that I have read backwards and forward and can literally quote like some folks can The Bible: The POSITIVE Trial, otherwise known by the much longer name Pregnancy Outcome and Safety of Interrupting Therapy for Women with Endocrine Responsive Breast Cancer.
They have studied a small group of women with stage 1 and 2 hormone positive cancers like mine and allowed them to have a break in their hormone therapy in order to try for a baby. The study shows that our risk of recurrence isn’t raised by taking that break, having a baby, then going back on the hormone therapy. Even IVF is deemed “safe’ for us.
I put safe in quotes for one big reason, however. It’s a small study and people will argue that not enough time has truly passed to be sure of the risks of having a baby. It’s only been five years. One difference between hormone positive cancers and some other types is that my risk of it coming back never goes away. In fact, the odds are greater that my cancer will come back AFTER five years rather than before. And to put it into layman’s terms, a recurrence means one of two things - either the cancer comes back in the breast (a local recurrence, less scary) or it comes back somewhere else in the body, or multiple places, in which case it’s stage 4. Once you have stage 4 breast cancer, that’s it. You will undergo treatment for the rest of your life. And while treatment has progressed tremendously over the last few years, many stage 4 breast cancer patients won’t survive beyond a few years. One day you could be fine, the next you get the results of a scan and find you have months to live. That’s the reality of what people like me live with everyday.
This is perhaps the biggest, scariest choice I’ve ever had to make.
In January 2024, I was allowed to stop my hormone therapy for my washout period (to get the medication out of my system before trying for a baby). In May, I had a PET scan, and thankfully, I’m still no evidence of disease. No sign that my cancer has come back. My oncologist, as well as several other oncologists because I like having second, third and fourth opinions, have told me that it is safe to do this. They have all given me to go-ahead to try for a baby. I am allowed two years off hormone therapy before I have to go back on it, so two years to hopefully make my dream true. Otherwise, all of this is for nothing.
Some people, if placed in my shoes, might tell me that I’m making a terrible choice and that it’s too risky. I know that in some ways I’m a guinea pig since so little is known about pregnancy after breast cancer still, but I’m not alone. There are thousands of us who are now being given the okay to do what was considered unthinkable before.
I’ve looked at the risks, read all the studies, asked my doctors every question I could think of, and I made my decision based on the scientific evidence we have today. My cancer was caught early, it hadn’t even spread to my lymph nodes. My risk of recurrence is low as it is, so they consider it safe for me to do this. Maybe they will say something different in ten years, but I’ve decided to trust in the science and will hopefully have my first embryo transfer in September. I know the road to pregnancy with IVF is a long one with no guarantees of success, but I can’t spend the rest of my life regretting not trying it. I never imagined that I'd be starting the path to motherhood in my 40s, but here we are.
Cancer steals so much from us already. If I spent my entire life living in fear of cancer, despite what current science says today, then did I really beat it? Or did I just merely survive?
No, I don't intend to merely survive, I'm going to live.