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Thursday, April 28, 2016


Appointment with Dr. A
When I got the good news about my 2% test result (see last blog post), I trumpeted it to the world, saying, "I'm not going to do chemo!" Cautious Jon said, "Well you haven't talked with your medical oncologist yet." True, I hadn't. But we did talk with him today, and even better than him saying, "Sure, that's your choice," he said, "No chemo for you!" Super great to have him say that so emphatically.

What gave him such confidence was that wonderful 2% number. There's another tool/study (SO many of them, and I'm grateful for every single one of them!) which looks at the tumor pathology and creates a PEPI score, which predicts the risk of breast cancer coming back. Dr. A said, "With this one, you don't want points." The cutoff to start accumulating points is anything above 2.7%, so since I have that lovely 2%, that gives me a grand total of zero points! Can't get better than that.

As is usual in our appointment with Dr. A, he threw a ton of info our way. In brief:

 - bone loss is a potential side effect of taking the anti-estrogen med, plus there are studies (more studies!) showing that since breast cancer tumor cells like to migrate to bones, treatments to forestall tumors there can significantly cut risks for cancer recurrence in the breast or in the bone or liver or kidney. Consequently, I'll be doing an IV treatment of Zometa every 6 months for the next 3 years. Plus he'll be checking my Vitamin D levels every time I go in - every 3 months. Obviously more doctor's appointments in my future! That's not even counting annual mammograms and MRIs.

 - there's also a blood tumor marker test he'll be doing. It's not yet "standard of care" but could give us a jump on diagnostics if some cancer decided to return. Quite honestly, I can't remember how often that will happen - perhaps it will be a blood test when I have an appointment with him every 3 months.

Patient Education Summit
A friend and I went to a Patient Education Summit for most of the day last Saturday, which was very good. There was a wide variety of speakers, from doctors to insurance reps to naturopaths to cancer survivors (I'm "supposed" to be calling myself that - but it feels a bit, I don't know, overly dramatic for my situation). I learned a lot, was sometimes laughing and sometimes teary, and time went by quickly. A few nuggets from that:

 - from a doctor - "...and there's the patients who consult Dr. Google..."

 - Suleika Jaouad, the keynote speaker, was powerful. She writes a column for the NY Times called, "Life, Interrupted" which she started while in a bone marrow transplant unit, undergoing some pretty drastic treatments.

 - a wife's response when her husband told her of his Stage 4 diagnosis - "You're in deep tapioca!"

- April 16th is National Health Care Decisions Day. Oh my. We really do have an "official day" for everything now, don't we?

Status Report
Overall I'm feeling very good. Still impatiently waiting for the final bruising and swelling to go down, but pretty much back to normal in every other respect.

Next week:
    Monday - MRI (not the icky needle one)
    Wednesday - meet with radiology team for "simulation" (get me set up for treatments)
    Thursday - Dr D, my surgeon, shows my reports and images to the tumor board to get input about those dratted spots that we still haven't gotten final consensus on
    Thursday - meet with Dr. D to see what the tumor board recommends

It's a key word for me these days. Hearing some people's stories at the Summit - "I've had 2 major surgeries, 7 hospitalizations, 57 chemo infusions, 28 radiation treatments, 4 day surgeries, 7 procedures, 5 ER visits, 21 prescriptions and 4 specialists" (this from the woman who organized the conference) - confirms that though I've been experiencing "the big C," I've only dipped my little toe in that ocean.

Another example. A couple of the speakers at the Summit said that when they were diagnosed, some friends they thought would be supportive had backed away, while other people they hadn't felt as close to really stepped into the fray. I couldn't relate to that at all. Every single one of you have jumped into this "detour" with me in a big way. I'm overwhelmed with your love and care. And so grateful.

1 comment:

  1. So grateful for the confirmation. So grateful for you. So grateful for God's presence and healing. So Grateful...