Surveillance, Remission, and Moving On

Surveillance after breast cancer treatment is a bit of a fraught topic.  Most women are dismayed when they go from a high degree of medical interaction during their treatment phase to almost being thrown out the door once they conclude the recommended surgery/chemo/radiation plan.  “I’m not ready for this.  Why aren’t they testing me to see if the cancer comes back?  Don’t they care any more about me?”

There are two bodies of research work that explain why our oncologists follow this path:

  1. The research by Dr. Susan Love that shows that finding cancer that has come back does not result in better outcomes (i.e survivability).  It means that the patient has to live with the knowledge that their cancer is now incurable for longer.
  2. The recommendations of the American Society of Clinical Oncology that state (emphasis mine):

Regular history, physical examination, and mammography are recommended for breast cancer follow-up. Physical examinations should be performed every 3 to 6 months for the first 3 years, every 6 to 12 months for years 4 and 5, and annually thereafter. For women who have undergone breast-conserving surgery, a post-treatment mammogram should be obtained 1 year after the initial mammogram and at least 6 months after completion of radiation therapy. Thereafter, unless otherwise indicated, a yearly mammographic evaluation should be performed. The use of complete blood counts, chemistry panels, bone scans, chest radiographs, liver ultrasounds, pelvic ultrasounds, computed tomography scans, 18F fluorodeoxyglucose–positron emission tomography scans, magnetic resonance imaging, and/or tumor markers (carcinoembryonic antigen, CA 15-3, and CA 27.29) is not recommended for routine follow-up in an otherwise asymptomatic patient with no specific findings on clinical examination. – See more here.

I have been on high surveillance for almost 3 years.  It’s meant PET scans and doctor visits every three months, brain scans every six months, and a whole pile of anxiety and false positives that I’ve discussed previously.  However, last week I got great news:  no more high surveillance.  My doctor will still see me every six months and the threshold for having a scan will be very low (e.g. a PET scan if anything at all comes up, or a brain scan if I start having headaches or going loopy(ier)), and I am still on my honor to contact her with anything out of the ordinary. But this is huge to me.  I don’t even know how to feel.  I feel lighter, like something is missing. It’s like how you feel after getting a short haircut when you have long hair, or breaking out of a full body cast. My breathing feels easier.  All psychological, I know, but wow. It’s a great feeling.

So that puts me pretty firmly in remission.  In August, my doctor notified me that I had hit the 2 year remission mark.  She was positively giddy, and had also shared the news with Dr. P, the head of the oncology department whom we’d gone to for a second opinion when the cancer came back the last time.  It seems that for triple negative breast cancer, this milestone was a Great Big Deal: I no longer have a higher risk of recurrence,  just the normal, published rates apply to me now. Three years ago, I asked my oncologist what my prognosis was and her reply was “I’m worried.”  The same question last week got me “I think that it’s pretty good.”  I’ll certainly settle for that.

And that leads me to moving on.  I’m still trying to figure out what happens next.  Maybe back to work.  Maybe volunteering.  I spent several hours last week talking to three separate women with breast cancer, sharing my experience and giving them some answers or places to look up information about their own diagnosis.  I like to think that I helped them through what is a very tough time.

I’m leaving my chemo port in, though.  I’m superstitious about that as the last time I had it removed, I was diagnosed with the new cancer about a week later.  I’m also a bit superstitious about getting through the next month, since last time I had the  goodbye talk with my oncologist I was back in a month with a recurrence. And my good friends neuropathy and fatigue continue as long term side effects of the hurricane of chemo (as my doctor described it), but I can unlink what I’m left with from the cancer that caused it.

So no news here will be good news.  And I want to thank everyone who’s followed this blog, who sent me support and good wishes and prayers.  I firmly believe that my recovery has been on the wings of all of you. Thank you all.


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1 Response to Surveillance, Remission, and Moving On

  1. Louise says:

    That is fabulous news, Cathy!

    The last few years have been so hard for you and for all your family, so to finally get this news must be amazing.

    Now you can start to plan for the future and I hope it holds lots of exciting things for you and Cecil!

    All my love

    Lou xxxx

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