PET/CT scan

H had another PET/CT scan yesterday.  She was afraid that it would light up like a Christmas tree along her spine and ribs, so I was very pleased that it did no such thing.  Her scalp tumour and one in her lung were bright, but the rest were dimmer than before - the radiotherapy has evidently been effective, and probably the chemotherapy too on most of the tumours.  She tells me that the lung tumour can be removed surgically if it becomes problematic.

The CT part of the scan (they do both at the same time so they can compare features between the two images) showed a crack in the lateral process of a vertebra which would be a plausible cause of her new rib pain, so the radiotherapy she had last week was probably the wrong treatment.  Never mind, I was happy.  H, who has to live with the pain and incapacity of her spine cracking, less so.

Radiotherapy

H is having radiotherapy today on her sore rib - this will probably be a single 'fraction', i.e. a one-off treatment.  There's less need for precision in this area, so it won't be tomotherapy.  We hope it will greatly reduce the rib pain she's been having.

The primary?

H has been looking at her scans.  She now thinks the primary is the abdominal tumour discovered by her biopsy scan, and that it's been the cause of the neuropathic pain she's had for years.  If this is right, the primary could have been discovered by the right scan five years ago (the MRI scan she had then was of her spine).  If it had been found, it would have been removed surgically, and there would have been a significant chance of cure.  It's distressing for H to think that she might be well now if she'd been more cautious about her own health.

Is this right?  H thinks so, and she's an expert.  On the other hand none of the experts who examined her five years ago, including herself, thought there was anything serious (her GP thought there might be a lipoma but was easily talked out of the idea).  And the sarcoma specialist treating her hasn't pointed to the abdominal tumour as a likely primary.

H has always been mildly contemptuous of the overuse of scans, thinking them a poor substitute for medical thought.  In this case, a precautionary scan might have been life-saving.  But this case is fantastically rare.

If the abdominal tumour is the primary, it may have been caused by an IVU (Intravenous Urogram) H had when she was 7 or 8, to look for an underlying cause for a urinary infection.  If so, that's an argument for doing fewer scans, on young people at least.

Birthday

It was H's 49th birthday yesterday.  She'd like to have another one next year.

Spinous process

The CT scan revealed a small fracture of the spinous process of H's sixth cervical vertebra.  This accounts for the neck pain.  It will have been caused by disease in the vertebra, as detected by the PET scan in March.

On the one hand, this is a minor (but painful) injury to an inessential structure.  On the other hand, it's not reassuring to find that a pathological broken neck is good news.

No immediate treatment is required for it.  But the fracture will probably not heal of its own accord; the doctors (including H) will consider radiotherapy.  And the painful rib may need it too.

X-Ray

Relatively good news - an X-Ray shows no obvious progression of the disease.  Pending the results of a CT scan, the plan is to persist with Caelyx with the addition of Zometa to address H's bone pain.

H is much happier - that's not just the X-Ray result, but also she's adjusted to her lowered expectations, and being with her colleagues at work makes her address her condition as a doctor more than a patient.

Pain

In the last few days H's back and rib pain has spread.  This is bad in itself, but worse it suggests that the chemo isn't working.  H, who has been amazingly strong up to now, is struggling to cope with it.

We're seeing the oncologist today.  H is due for another dose of Caelyx tomorrow, but there may be a change of treatment plan.