For many people, once you hear the words “You have cancer,” things like having a family are put on the back burner, far back on the back burner. For others who receive a diagnosis later in life and therefore maybe already have a family, other questions may arise. Some of these questions I discussed in previous columns are about genetics and genetic testing.
For me, however, as a 25-year-old young adult receiving a cancer diagnosis, starting a family had still been a dream, one that became very uncertain if not completely obsolete. At least until I started to better understand medullary thyroid cancer (MTC).
When one is diagnosed with chronic cancer, those questions begin to rise again over time. In my case, the desire to start a family never quite disappeared. Even in the most grueling of treatments, it was always lurking just beneath the surface.
After about a year, following my diagnosis, I dared to broach the subject with one of my doctors. Over time, I have seen multiple health care teams. I have seen them in different cities, different provinces within Canada, as well as a different country, Germany.
All of these teams had varying levels of expertise in the treatment and understanding of MTC. Some had many patients with MTC in the past, others had only a handful in their careers. I am not sure if this played into their answers once I asked what their opinion was on having children with MTC.
The majority of doctors I spoke to about this topic, made it clear they would not recommend starting a family if I in fact tested positive for MEN2 or any other hereditary gene for cancer, once all my testing was done. My genetic testing was completed about 10 months after my initial diagnosis and surgery.
In my instance, the testing revealed I had a sporadic case of MTC, impacting 70-80% of all patients afflicted with this disease. To say that I was relieved by this finding is an understatement. Up until this point, I hardly dared to hope that maybe one day having a family of our own would be possible. After the diagnosis, I started asking questions.
When would we be able to start trying for a family? Are there any other reasons why I should not carry a baby myself? Are there risks for me or my baby during pregnancy? How would a pregnancy affect the cancer? Would the cancer affect my baby somehow besides the genetic component?
Read more about therapies for MTC
I received varying answers. Some doctors thought that having my own biological child would be irresponsible, even if I couldn’t pass on MTC to them. Others advised me to wait a year or two to ensure I had a good idea of disease progression before becoming pregnant. Again, others simply never gave me a straight answer as to what they thought I should do or not do.
I decided to follow the advice of those telling me to wait to have more information but still leave the option open. Medically speaking, I waited until I had a few years of scans and blood work showing minimal to no progression of cancer until trying to have a baby. This had been the more detailed advice given to me to ensure that there wasn’t major growth that would require me to have more extreme treatments. And that, in turn, would make pregnancy impossible or dangerous, for both the baby and me.
Now, 18 months after having my first baby boy, we are faced with making the next decision. A decision to have a second or to simply be content with the one miracle we were granted. At this time, I am still waiting for more testing to be complete after pregnancy and postpartum. These tests may take the decision out of my hand. There is a chance that pregnancy did speed up some of my progression, in which case having a second child would not be in my health’s best interest.
All in all, the decision to start a family is such a personal one for each patient and their significant other. One area in which health care professionals could help the most is giving information about all the options. For example, sharing stories such as mine where having a child has had a very positive effect on me (especially my mental health), but also explain the risks that may come with pregnancy. Connecting patients to each other, not only for this reason but also for peer support, can be incredibly beneficial.