I cried the entire drive home from my oncologist appointment on Monday. I’m not sure if part of it was that I also had my Lupron shot, so my hormones might have made me a little more emotional than usually. But at least part of it was that I felt like the ground was pulled out from under me.

At my last oncologist appointment (5 months ago), I had asked about my change of recurrence. I didn’t like the number. I had hoped for a 5-10% number, but instead I got a 20-30% number. That shook my foundation. The mental tool I was using to hold back the fear of recurrence got disrupted.

Monday I asked about hormone therapy. You see, I’m only partially on hormone therapy. I’m doing the Lupron thing, but not the AI thing – at least not right now. Last time I tried the AI it was a bit of a disaster. I lost 3-4 days of work because I couldn’t think. I had to stop.

My oncologist talked generally about hormone therapy providing protection beyond the time you take it. They don’t really know why, but if you take it for 10 years, then the protective effect seems to be something like 15 years – so it lasts longer.

He also talked about the importance of balance and quality of life. He said that if you are low risk for recurrence and have bad side effects, then the decision is easy – stop taking the meds. But, in my case it isn’t so clear. He grouped me in the high chance of recurrence group, but also horrible side effects. He did highlight that some people just cannot manage hormone therapy. They don’t know why it causes such bad side effects in some people but not others. He highlighted that it isn’t a sign of weakness on my part. I should not feel bad that I get horrible side effects. But the part of the conversation that through off my grounding was that of putting me in the high risk category.

I also asked about neuropathy. I’m 2.5 years out, so this means that any changes will be small – that is, that I can not expect to have any drastic improvement from what I have now. So, my fear of the neuropathy being permanent seems to be the reality I’m destined to live with.

My oncologist agrees that we should be introducing one change at a time. In the fall I’m going to be changing my mental health/side effect meds. The change will hopefully also help with neuropathy and arthritis back pain. Once that change has happened, I’ll again look at re-introducing the AI (aromatase inhibitor – if you think of menopause as a reduction in estrogen levels, the AI brings the estrogen levels even lower – and since my cancer was fed by estrogen this in effect starves it). There is some hope that the new mental health med will make it possible for me to introduce the AI with limited side effects. We’ll see.

But all this has left me in need to reground myself. Hearing the “high risk” makes it more difficult for me to think about the future is a positive way. On the other hand, it also reminds me of Carpe Diem – and the need to focus more on the here and now.

I’m also feeling strong at the moment. I biked 30km yesterday. I haven’t been able to do that in a long time. A couple weeks ago we hiked 10-miles. Again, that is a huge accomplishment. So, physically, I’m starting to feel strong again. I just need to find my grounding mentally.

  • Becky


  • Hi, another well written and thoughtful post that I can totally relate to – thank you! When I started chemo my Oncologist showed me the spreadsheets that show a 95% likelihood of 10 year survival, which I took to mean my chance of recurrence is 5%. When I finished chemo he said, “right now we would say you are NED but you have a high liklelihood for recurrence so we need to be vigilant”… eep. Rug pulled. Exactly how I felt!! I could not handle the AI – devastating joint pain in every.single.joint… so I went back on tamoxifen even tho I had my ovaries out. Curious what med could help you go back on an AI?

    • Hi Tamara,
      Thanks for the note. The medication is Cymbalta. It is an antidepressant but also apparently affects overactive nerves – so in theory it might help with neuropathy pain … and might help with the side effects of the AI … but it might not. It will be a ‘wait-and-see’ … I lasted about 8-months on tamoxifen before I realized it was causing the horrible headaches and brain fog (I seriously thought I had brain mets and did a brain MRI).
      I may be one of those people who just cannot handle the AIs .. we’ll see.

  • Ignore that high risk stuff. You are not a statistic, you are a human being. If you want statistics, I would be happy to give you a long list of many outliers that I personally know – someone with stage IV ovarian in 1980 and is still here. Or multiple women who have been stage IV with breast cancer for more than a dozen years… The list goes on.
    I have been on AIs – first tamoxifen and then femara with minimal side effects. but I know many who have had problems with AIs…. Good luck to you.
    I am on so many medications I am well aware of the too many changes at once issue. One big medication change, wait six months, and then try something else….
    No reason to be brave. Be yourself. Tears are accepted always…..

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