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6/20/2016 Latest post:
Well, here we are back on Caring Bridge, never a particularly positive sign regarding our family “journey” (some of us like the card sent to Steph saying– I’ll only refer to your cancer as a journey if it's taking you on a cruise). Anyway, some of you have heard part or all of the following, but we wanted to do our best to keep family and friends all on the same page. After spending six months in Meissen, Germany helping Stephanie courageously deal with her breast cancer treatment, I guess the Universe decided that our family could handle further challenges.
We’ll start with the short version. Cutting to the chase – Joanna has metastatic cancer found in her bones (spread diffusely throughout her skeleton), without a definite primary tumor yet identified.
The oncologist believes it is likely breast cancer with spread to bone, but no primary tumor was found on a PET scan or by exam. Mammogram and ultrasound are pending. There are still a number of test results not back yet, so until the origin and type of the tumor are more clearly defined they can’t really map out a treatment plan. Jo has been in St Francis Hospital in Hartford, but should be heading home in 2 or 3 days. Updates to follow.
Now, for our “long version” –
Over the past month or so Joanna was troubled by some odd,migrating pains. It seemed that the pains were musculoskeletal. Jo was seen by several docs and at one visit rib x-rays were done, revealing a rib fracture. About one week later, while placing a casserole in the oven (something I’ve always viewed as dangerous),she suddenly experienced low back pain.
By serendipity, I had a previously scheduled physiatry appointment the next morning. Utilizing my “MD card” I arranged for Joanna to be seen in my time slot. The physiatrist suspected a disc problem and ordered an MRI. The MRI showed the anticipated herniated disc, but also revealed an unusual “mottled”appearance to the bones (spine and pelvis). At that point our primary care doc called Joanna in and discussed the need to refer her to an oncologist to address the abnormal MRI bone findings.
With the help of our good friend and colleague Paul Dworkin,we were able to get an appointment for the next day at Saint Francis (although I myself had worked there for 15 years, my letter to the Hartford Courant editor entitled – will St Francis Hospital abandon it’s responsibility to Hartford’s children living in poverty? – seems to have rendered me a persona non grata). The initial impression of the oncologist was the possibility of multiple myeloma(Google can tell you more about that entity than I can). Blood work was sent, but the results were not consistent with the suspected diagnosis.
At that point the oncologist ordered a PET scan which showed dramatic, active involvement of nearly all the bones in Jo’s body. No tumor, nor any soft tissue abnormalities were seen. Next stop – bone marrow aspirate and biopsy. That occurred four days ago and on that day the oncologist felt Joanna needed to be hospitalized for pain control(primarily muscle spasms of the back and sides) and an elevated calcium level in her blood (due to the boney process reflected in the PET scan). I would carefully sort out each possibility raised by the oncologist and “root for” the one that sounded least horrible. For awhile we focused on possible Primary Lymphoma of Bone, which carries with it a good prognosis.
Ultimately the oncologist shared with us his conclusion that the bone abnormalities represented metastases from a tumor that had yet to be identified. His suspicion is that breast cancer is the primary tumor, but that is not definite yet. The source of the metastases can generally be identified by the abnormal cells in the bone marrow, even if the original (primary)tumor is never located.
So at this point we await the results of a few more tests. Based on the source of the malignant cells a treatment plan will be formulated. We are fortunate in that we not only have access to the best of medical care, but equally important, are surrounded by the love and support of family and friends. I’ll try to be much more brief in future postings, but I thought telling the whole story once might be worthwhile. To be continued.