A lot of people asked me more about my diagnosis after I told them I was pregnant. Here's the medical side of the story.
I found the lump when I was about 13 weeks pregnant. I was doing a self check in bed - you can generally feel lumps better when laying down (good hint for your self checks). I told my better half and we agreed that it was weird, but probably nothing - there are lots of changes that come with pregnancy. I had an appointment with my OB in two weeks anyway...The rest of the story is mostly the same as I described it initially, but with the caveat that all the practitioners knew I was expecting.
About 1 in 3,000-3,500 women receive their breast cancer diagnosis while pregnant, which is ~3.8% of all new breast cancer diagnoses. The Spielman Center said I was their fourth pregnant patient in the last year and a half. In Ohio, I've met a few more women that have gone through treatment at Ohio Health too.
This is all to say that cancer while pregnant isn't *that* common, but not totally rare either. Since my diagnosis, I've e-met many women around the world who were diagnosed while pregnant. There's also an amazing resource called Hope for Two, that helps consult pregnant women diagnosed with cancer.
About 20-30% of women diagnosed with breast cancer while pregnant are recommended to terminate the pregnancy, which is not necessary. (This opinion luckily wasn't presented to me). If you're in the second trimester, it's possible to have cancer treatment almost like a non-pregnant woman. It's not easy - makes the medical side a little more tricky mostly because the data on treatment options isn't rich. There aren't 4 million cases to reference, but there *are* some cases with very good outcomes.
It seems crazy to think that you should restrict coffee and Tylenol, but are allowed chemo while pregnant. However, plenty of women go on to have completely normal pregnancies / babies while undergoing chemotherapy because (for the most part) the chemo molecules are too big to cross the placenta. Now, different types of chemos carry different risks. Generally,
I opted for AC followed by Taxol. Waited on the carbo till after delivery - 5.10 was my first of four.
Chemo isn't recommended after 35w, because it can impact (a) the mother's counts, which can lead to increased infection rates after delivery and (b) the baby's counts, which are important for the baby to ward off infection too. My last treatment was at 35w5d, which was cleared by my high risk OB.
George was delivered three days after my fourth Taxol. I rec'd my last chemo on Weds., and went into labor on Friday.
"Chemo babies" tend to have lower birth weights and can be born earlier (the mean gestational age at delivery was 35.8 ± 1.9 weeks in a study of 104 women/children), but birth defect and growth restriction rates are the same as the general population. And, even though the patient is bald, the babies can be born with a full head of hair.
George was born with hair because he didn't get that horrible AC stuff like I did. He was born early (36w1d) and skinny (4lbs 15oz), but a long length (19 inches) with a very big head (90th percentile :-O ).
It's good to note that having cancer while pregnant can elevate your AFP levels. High AFP levels can indicate spina bifida, which they can test for in a high-resolution ultrasound as early as the second trimester.
It was a pretty terrible week when we got the "high AFP" / high risk for spina bifida call a week after my cancer surgery. George was okay, the AFP levels we think were related to the cancer.
If you're undergoing chemo while pregnant, you'll get all.the.doctors.
I had my oncologist working with my neurologist, consulting with my high risk OB and my regular OB. (You can keep a regular OB as a voice of sanity in all this).
Finding the Lump
I found the lump when I was about 13 weeks pregnant. I was doing a self check in bed - you can generally feel lumps better when laying down (good hint for your self checks). I told my better half and we agreed that it was weird, but probably nothing - there are lots of changes that come with pregnancy. I had an appointment with my OB in two weeks anyway...The rest of the story is mostly the same as I described it initially, but with the caveat that all the practitioners knew I was expecting. Some Stats
About 1 in 3,000-3,500 women receive their breast cancer diagnosis while pregnant, which is ~3.8% of all new breast cancer diagnoses. The Spielman Center said I was their fourth pregnant patient in the last year and a half. In Ohio, I've met a few more women that have gone through treatment at Ohio Health too.
This is all to say that cancer while pregnant isn't *that* common, but not totally rare either. Since my diagnosis, I've e-met many women around the world who were diagnosed while pregnant. There's also an amazing resource called Hope for Two, that helps consult pregnant women diagnosed with cancer.
About 20-30% of women diagnosed with breast cancer while pregnant are recommended to terminate the pregnancy, which is not necessary. (This opinion luckily wasn't presented to me). If you're in the second trimester, it's possible to have cancer treatment almost like a non-pregnant woman. It's not easy - makes the medical side a little more tricky mostly because the data on treatment options isn't rich. There aren't 4 million cases to reference, but there *are* some cases with very good outcomes.
No Coffee...but Chemo?!
It seems crazy to think that you should restrict coffee and Tylenol, but are allowed chemo while pregnant. However, plenty of women go on to have completely normal pregnancies / babies while undergoing chemotherapy because (for the most part) the chemo molecules are too big to cross the placenta. Now, different types of chemos carry different risks. Generally, - AC (cyclophosphamide, doxorubicin) are the most tested type of chemo.
- Taxol has been studied a fair amount, and has been shown to be okay.
- Carboplatin has been studied less, and in animal studies, crossed the placenta with some skeletal implications (note that your skeleton is mostly formed by the second trimester).
I opted for AC followed by Taxol. Waited on the carbo till after delivery - 5.10 was my first of four.
Chemo isn't recommended after 35w, because it can impact (a) the mother's counts, which can lead to increased infection rates after delivery and (b) the baby's counts, which are important for the baby to ward off infection too. My last treatment was at 35w5d, which was cleared by my high risk OB.
George was delivered three days after my fourth Taxol. I rec'd my last chemo on Weds., and went into labor on Friday.
"Chemo babies" tend to have lower birth weights and can be born earlier (the mean gestational age at delivery was 35.8 ± 1.9 weeks in a study of 104 women/children), but birth defect and growth restriction rates are the same as the general population. And, even though the patient is bald, the babies can be born with a full head of hair.
George was born with hair because he didn't get that horrible AC stuff like I did. He was born early (36w1d) and skinny (4lbs 15oz), but a long length (19 inches) with a very big head (90th percentile :-O ).
It's good to note that having cancer while pregnant can elevate your AFP levels. High AFP levels can indicate spina bifida, which they can test for in a high-resolution ultrasound as early as the second trimester.
It was a pretty terrible week when we got the "high AFP" / high risk for spina bifida call a week after my cancer surgery. George was okay, the AFP levels we think were related to the cancer.
If you're undergoing chemo while pregnant, you'll get all.the.doctors.
I had my oncologist working with my neurologist, consulting with my high risk OB and my regular OB. (You can keep a regular OB as a voice of sanity in all this).
Pregnant with Cancer | Major Decisions
- Surgery before or after chemo - I had surgery first, which is called adjuvant treatment. In hindsight, I wish a little that I'd had neo-adjuvant surgery (surgery after chemo), a treatment path most typical for young women with triple negative breast cancer. I had surgery first because of timing. Anesthesia / surgery can induce labor, which is riskier the later in the pregnancy the surgery is performed. They were afraid that I would go into labor at 26w if they did chemo first, surgery second. Having adjuvant treatment is one of my only regrets.
Most TNBC clinical trials require you to have neo-adjuvant treatment because it allows the clinicians to measure your pathological response to chemotherapy. If patients have a pathological complete response (pCR), they are much less likely to have a recurrence and have a much better long term prognosis. By not cutting out the cancerous tissue right away, you know how well your cancer responded to the chemo. Most clinical trials require neo-adjuvant treatment with some residual cancer (non-pCR). - Type of chemo - I outlined some of this information above. Originally, my oncologist felt uncomfortable administering Taxol during pregnancy...but my high-risk OB and I did a **LOT** of research, and we decided it was best for our family to continue my treatment - allowing George time to grow and continuing to kick the cancer while it was down.
- Delivery date - This is a big one. In my file, there are induction dates as early as 31w. Time in the NICU (without good reason) wasn't in our plan. Having our "normal" OB helping us through this was very helpful. The normal OB, high risk OB, and oncologist settled on 36w, on 4.28, without the Taxol. After we decided to add in the Taxol, we were waiting for 38w - more cooking time for G. I'd resume chemo 11-12 days after delivery. G came at 36w1d, and I started chemo 11 days after delivery.
- Additional ....
- Surgery - Every time you're under anesthesia, you have a risk of early delivery. I chose to wait till after deliver to have my port placed. So, 6 days after delivery, I had a little surgery and I now have a port.
- Meds - All the supplemental medications need to be cleared through pharmacy to ensure they were okay for the baby. I chose to not take a bunch of supplemental meds, including pain medication after surgery, to minimize risk to the baby.
- Scans - You know that little form you sign when you have an x-ray to say you're not pregnant? Turns out x-ray techs hate giving scans to pregnant women! I had two chest x-rays and two mammograms while pregnant. They put a lead skirt around me from my ribs down to avoid risk to the baby.
In the meantime....
A few pictures
Matching my baby
Chemo with a port!
Some hair growth (possibly before losing it all again on carbo :-/)
You are a wealth of information heidi. We are so proud of you!
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