Plans are Meant to be Changed

Let me introduce you to a young woman so focused on order and control that she would work herself into a tizzy if the weekend social plans were not confirmed by Wednesday morning. She hated to start a day unprepared for what laid ahead and she never EVER played things by ear! When plans changed, as they inevitably do, she was crestfallen forced to put herself back together and adapt. She lived prisoner to this need for control.

Then came this crazy thing called cancer, the master of all disorder. Little by little cancer stripped her of all the control that she thought she once held. She was left with nothing but the moment before her, and the next breath she would breathe. Little did she know that this catastrophic lose of control would end up freeing her from the endless battle she had been fighting to plan out ever moment of her life.

It turns out plans are just meant to be changed.

If cancer taught me anything, it is that the alternative route may end up being better than your original plan ever could be. It’s not that the goal has to change, but you may reach that goal via a different path. While I am still human and crave order, I have had to learn to let go. During cancer treatment and beyond, the plans are always changing. An appointment gets moved, a medication has to be changed, a complication arises, and the list goes on. There are so many variables out of your control and getting hung up on the “should have beens” only leads to disappointment.

In a recent post (Facing Fear and Planning for a Family After Cancer), I shared with you how my husband and I have been evaluating family planning again and looking at timelines for going off my endocrine (hormone blocking) therapy. The new clinical study I will be joining (POSITIVE) enrolls triple positive breast cancer survivors looking to get pregnant after cancer starting at 18 months of completed endocrine therapy. I’ll be honest, once I heard 18 months referenced instead of the 2 year checkpoint my oncologist had been pushing, I got excited. My husband and I have been eager to start a family and I saw this as an exciting new development, though also a scary one. It meant this next stage may be here sooner than we initially thought.

Today, my husband and I met with my fertility specialist to talk about timelines and logistics in order to have a comprehensive planning discussion with my oncologist in May. The fertility specialist shared with us that the trial I will be entering is really just a massive data collection in hopes of informing future practice. The study does not provide guidelines on treatment to the participants, since at this point no such guidelines exist.  There is currently little to no data on my subtype (triple positive cancer, no lymph node involvement, 27 at diagnosis) or this area of research (pregnancy after cancer).  The international trial strives to collect data on all possible treatment plans and the various outcomes, both positive and negative. At this point, they don’t know if it makes a difference if you go off your medicine to get pregnant at 18 months or at 2 years. There is no data to support or confirm the safety of various timelines/procedures. The only things they do know are that pregnancy itself does not lead to an increased rate of cancer recurrence and the hormones produced during pregnancy do not feed hormone positive cancer as one might assume.

The goal of the POSITIVE trial is to enroll enough young women in order to evaluate the variables involved in pregnancy after cancer and eventually be able to provide meaningful guidelines to young women like me. Like most things when it comes to young women and breast cancer, the data is absent – leaving doctors with nothing concrete to base their decisions on. So, for now, it’s back in the hands of my oncologist. We’re not going to change anything about my treatment plan to accommodate the study, the study will simply collect data on my various choices, timing, and outcome both in terms of pregnancy and long term health.

As of now we’ll probably wait the full years on my endocrine therapy, which will bring us to Jan. 2018. Then I’ll have to take a break from my medication to see if my cycle returns (2-3 months). If my cycle returns, we may TTC naturally and if it does not, then we would attempt a FET (frozen embryo transfer).

While the old me would have left today’s appointment stressed to the gills over the added uncertainty, the changing plans and the continued lack of control — I oddly felt a relieving sense of calm. Now that we had all the information we needed to make informed decisions, I could trust in the process. No matter what my oncologist says at our next appointment, I know the next year and a half will be filled with ups and downs, twists and turns and countless changes to the plans. Nothing about pregnancy after cancer is certain and if we’re going to make it through this process with some semblance of our sanity and emotional stability, we have to accept that the goal is what’s important not which plan get us there. I am at peace with the process (for now haha). Letting go of the plans and the control leaves me free to accept and adapt to whatever life may bring our way.

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7 comments

  1. Stacy L says:

    Thank you for the information about the POSITIVE trail. I’m so curious to find out more about the chances of pregnancy after being in chemically induced menopause and it just sucks that there isn’t research out there already (my oncologist is all about the research and the studies). I was eager to hear about what they had to say to you and I’ll be following to hear about what happens in the future! Good luck!
    P.S. You still seem to be quite organized and in control of most things from what I can see…isn’t it nice to get some parts of your old self coming through again 😉

    • Anna says:

      Stacy, I am so glad you found the information I shared helpful. I would definitely ask your doctor about the trial because I know it is international. The home base in the US is Dana Farber, but the main site is in Switzerland. I will definitely share my updates on the blog and keep everyone in the know. I know I am not the only one facing these challenges. Ps. that means so much to me to hear you say that about my organization, because I feel like such a dummy lately with the intense chemo brain effects.

  2. Melisande Balleste says:

    Thank you for the information. I cannot for my turn in motherhood I have to wait at least 3 more years. So far I am entering my second year of post treatments. My daily goal is to make a list and have it completed by the end of the day if not then it gets push for the next day.

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