How much breast cancer chews up your schedule

Whether you’re newly diagnosed with DCIS or a more advanced form of breast cancer, you’ll notice it has a big time impact. One of the things that surprised me was just how much breast cancer chews up your schedule. I had something like 38 appointments in 20 weeks, and this did not include radiation, which was not in my treatment plan.

In case you’re wondering what all those appointments were for, I had two attempts at breast-conserving surgery, followed by a mastectomy with immediate first-stage reconstruction (This was followed a couple of months later by second-stage reconstruction and augmentation/lift of the other breast, followed by nipple reconstruction. They are not included in my appointment tally.)

Each surgery required consultations and follow-ups with my surgeon and/or plastic surgeon, and my family doctor and oncologist both wanted to track my progress. I believe all these visits were necessary; I just want to give you a sense of how much time the process can take.

The bigger thing you should be aware of is the pressure you may feel to do something right now once you’ve been diagnosed. Do not give in to that pressure. DCIS is very early stage, technically stage 0, so you are not putting yourself at risk by giving yourself time to think.

You’ll need it, because like so many things you don’t realize until you get there, your choice in breast cancer treatment is not written in stone. I had to decide between mastectomy and radiation. I also had to decide whether I wanted immediate reconstruction, and whether I wanted reconstruction on the other breast. The reconstructive choices were no brainers. Deciding between mastectomy and radiation, not so much.

While I was trying to decide, my mind was spinning so much I felt like a hamster on a wheel. I had to give myself permission to take the day off from thinking about it a couple of times, and it wasn’t easy. Distractions like movies gave me something to focus on aside from the contents of my head.

I should add that my time pressure was self-induced. My doctors were very good about giving me time, although my oncologist said I should take some time but not too much. I think he wanted to make sure I didn’t stall myself into total paralysis. I realize this may not be the case for everyone. If anyone, whether a doctor or family member, tries to pressure you into making a decision before you’re ready, don’t do it.

It’s your body and ultimately, your decision. Give yourself time to make the one that’s best for you.

Jackie Fox is the author of From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer, and blogs at Dispatch From Second Base.

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  • ButDoctorIHatePink

    I can definitely relate to this. In August ’09 I was diagnosed with Stage II invasive HER2+ breast cancer. I’m still in treatment, and to date I have had over 70 medical appointments. There were many times I had four appointments a week. (And, I didn’t have radiation either). It’s extremely difficult to do everything you need to do and hold down a job. My employer has been very understanding but it would be nice if some of the imaging centers where tests are done (CT/Dexa/Bone/Muga’s) were open on weekends or after hours. I don’t think people realize just how much time all of this takes, and for how long it goes on.

  • Doutor Leonardo

    Screening itself very time consuming.

    If a thousand 50 years old women are screened annually for 20 years, they live 132 years more than if none was screened. This means less than 50 days per woman. One mammography and one appointment before and another sum up to 60 days partially lost because of screening. Not counting with false-positives, further mammographies and unnecessary biopsies.

    • John Ryan

      No offense, but this is the same strange logic that the US Preventive Task Force used to recommend stopping mammographic screenings for most women under 50. It equates the inconvenience of the many for life (substantially longer than 50 days) for the few. Does anyone have the right to decide that for another person?

      I do agree that health care providers need to be sensitive to their patient’s lifestyle and needs. But then those extended hours cost money, and paying more does not seem to be the theme in health care now.

  • Donna

    I am doing well five years out from being diagnosed with a Stage III IDC.

    My current annual appointments: one mammogram, one breast MRI, two appointments with breast surgeon, four appointments with oncologist, four blood draws, two extra dental cleaning beyond the usual six month cleanings because chemo was hard on my mouth, occasional extra blood draw because my platelet count is still low

    That’s fourteen encounters per year for someone who is five years out!

    I am a psychiatrist. When I was first diagnosed I worked in an outpatient program on hospital grounds. My hospital made it as easy as possible for me to continue to work during treatment. I could leave my department, have my radiation therapy, eat lunch and be back to work in less than 45 minutes.

  • Finn

    I didn’t count how many appointments I had in how long after being diagnosed with ovarian cancer, but my impression from the experience of a friend diagnosed with breast cancer a year later is that breast cancer eats up more of your time. I got chemo for much longer (16 months) and she didn’t have reconstructive surgery, but she still had far more appointments than I did–and in a shorter span of time as well. We both managed to hold down full-time jobs thanks to FMLA but it wasn’t easy.

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