White to Black (Update 5)

The previous update was posted only 10 days ago, and at that juncture, despite the ravages of treatment and the persistence of unpleasant side effects, my Stage 4 situation had apparently stabilized. Compared with previous months, things were feeling at least tolerable, and that gave me a small measure of hope.

Over the past couple of years I’ve been okay for the most part sitting with feelings of despair for the moments that they occupy me, not letting them rule my thoughts otherwise, and looking at the situation realistically has in general served me well. So, to have two good scan results in a row gave me the go ahead, it seemed, to entertain thoughts of a future opening up ahead. A crack of light if you will on a darkened space.

Still, my right knee had been painful, for no apparent reason for more than a month, and I had mentioned the issue three times to my oncologist before he felt it merited a closer look. This made sense as incidences of the type of head and neck cancer I have spreading to the bone – and that generally means the spine when it does happen – are exceedingly rare. One study which my wife looked at, tracked over 8300 patients with the type of cancer that I have and the number of cases in which the cancer went to the bone was 0.3%. And of those tiny number, most were under 29 years of age. Of the people in their fifties, only one or two developed bone metastasis.

So we assumed that I had some kind of orthopedic trauma, perhaps a strained ligament, pulled muscle, or stress fracture say. I was keen to hear the results and get the problem solved. It had been a weird injury. I did not recall any injury episode, and I hadn’t been exerting myself physically enough on that leg to be causing the aggravation of any injury which was there. I’ve had lots of injuries and this wasn’t behaving like any other injury. I’m getting to be an old fart perhaps, but I was not quite on board with the idea that my body was just generally falling apart in mysterious ways.

At last I had an MRI on my right knee, about a week after the PET scan, at 9:00 pm on Halloween no less.

My oncologist called me on Friday afternoon with the results, however I missed his call and the voicemail somehow got stuck somewhere and didn’t appear until a day later. At any rate, someone from his office did reach me not too long after. The news: it seems I have “a mass” on my right femur, a 5cm lump attached towards the inside and just above the ball of the joint. The oncologist was now going to refer me to an orthopedic-oncologist in Boston, and was going to also consult with an orthopedic surgeon about next steps.

I was, to say the least, floored by this news. I had a few good days there of coming to a point of acceptance with the side effects of treatment and medication, and even feeling mildly positive, but this news does let the air out of that bubble. Man!

I talked with my oncologist on Thursday with week, my regular appointment time. He said he was completely surprised by what had happened, and found it a very unusual development for three reasons.

One is the piece mentioned previously, which is that head and neck cancers do not spread to the bone 99.9% of the time. The lungs are the most common destination.

Two is that even for those cancers which do go to the bone more readily – prostate and breast cancers are apparently like that – it is very rare for the bones of the legs to suffer that cancer. That’s why the PET scan usually goes only as far to the mid-thigh, as there is almost never anything to see past that point.

If the mass on my femur is cancerous, there is the possibility that it is not a head/neck cancer but an unrelated bone cancer, forming a sarcoma. That was, for the oncologist, odd thing number three going on, if it were the case that I had a second cancer on my femur: suffering multiple cancers rarely happens to people my age, but rather is more prevalent among elderly cancer sufferers.

Like I said previously, the statistics are nice and all, but if you happen to be in some tiny percentage, despite all odds, then the statistics offer little comfort.

I have set up two visits with orthopedic-oncologists in Boston this coming week. I’m going to get a second opinion on this one. I imagine I will be getting an arthroscopic biopsy by the end of the week or early next week.

According to my oncologist, who is not a bone cancer expert, I have either got some rare mutated form of head and neck cancer that improbably went to the bone, or I have a second cancer, and the mass on my bone is a sarcoma.

The repercussions are quite different for each condition. If this is a form of head and neck cancer, then they will simply give it radiation treatments, and apparently there are next to no side effects with radiation on your knee, and we thereafter carry on with treatment for my lung cancer that is otherwise working great. The oncologist makes that route sound more like a speed bump than anything else (too rosy?).

But if it is a sarcoma, then, as far as my not-a-bone-specialist oncologist is concerned, I may face a very different route forward: complete knee replacement.

The irony of this for me is that, while I suffer from various orthopedic dis-functions (rotator cuff muscles, elbow tendons, spine issues), my knees have always been bomb proof, despite having done heaps of activities which have been hard on them. And now I might have to have a perfectly sound joint otherwise replaced. WTF?

I don’t know what I will discover over the next few days, but hopefully my situation will resolve without something as radical as a knee replacement. That’s not a prospect I will be able to come to terms with easily, that is for certain. I’m thinking that the orthopedic-oncologists may have some solutions which I have not considered.

To quote the Sarcoma Alliance website:

“Bone sarcomas [are] very rare with approximately 2,890 new cases diagnosed in the United States each year, and approximately 1,410 deaths”

I’m not delighted to find out I’m rare in this case.

I’ll post up again when I know the outcome of the consultations and their follow up.