Day 68 - Amputations 101

I got up early after a poor nights sleep. I was wide awake when the alarm went off.

Right in front of my house is a road that is only open for a few hours a day. It is used to relieve the main road which is nearby of rush hour traffic. I know that at 07:30 the road is like a parking lot, so I wanted to leave early and be at the hospital by 06:30 and have a leisurely breakfast.

 My appointment with the orthopedic surgeon was for 08:30. I was in the waiting room by 8, with all papers filled out.

The surgeon is Phillip. Nice guy. His sister lives in Houston Texas.

He looked at all my papers and pictures. We chatted a lot about my leg,
and the cancer growing in it.

We talked about the chemo. He said that Chemo can stop Angiosarcoma tumors from growing larger, but is not very good at killing the tumors. No matter how much chemo I get, the 5cm around each tumor still needs to be removed. Even if the chemo makes the tumors smaller, it will not reduce the distance that the cancer has already spread.

This type of cancer both spreads to surrounding tissue, but also metastasizes to far parts of the body.

While he was poking around, I was surprised to feel pain in quite a few spots, deep in the leg. I had never noticed that before. He did accurate measurements of the extent of the cancer tumors according to the PET scan.  He is going to ask the PET scan people to redo the photos with accurate measurement on each picture.

He agreed that the removal of all tumors and surrounding tissue will result in very little skin or muscle left between the knee and the ankle. It would make the leg useless, and very infection prone, even with a skin graft.

 There is a good chance that some of the cancer seeds have already spread throughout my body, but if the leg is left as is there will be thousands more of the "seeds" spread from the tumors, via the blood, to all parts of the body. So if there are like, only 5 seeds that have spread, those will be tumors that we will have to fight in future. If we leave the leg as is, there might be thousands of tumors to fight in future. Amputation is the only option, and therefore by definition, not an option, but a necessity.

He then mentioned that removing the leg may extend my life by years, but it does not change the diagnosis of Angiosarcoma.

He showed how much of the lower leg he needs to leave in order to be able to form a stump. I had sort of resigned myself to walking like Oscar Pistorius. Then he showed how much he would have to remove to get all the cancer. He will have to remove more leg than will allow a stump to mount a prosthesis on. That was bad news.

A lower leg prosthesis would cost about $50,000 USD for a good one that would allow unlimited walking. Now he was telling me that I did not even have that option.

The above the knee amputations mean that the prosthesis will require a knee joint. A good knee joint costs about $40,000 USD. That means that a good above-the-knee prosthesis will cost the current value of my house. I asked how much Medical Aid would pay. More bad news.

He then said that Medical Aid probably wouldn't pay for any prosthesis, even a below-the-knee one. They only pay for prosthesis if there may be future health complication by not having one. If a young guy has a trauma and the leg gets amputated, then the possibility of future complications becomes a concern to the Medical Aid. With a prosthesis he will less likely to develop back problems and obesity problems. He must still be employable to pay the Medical Aid premiums.

He also said that Medical Aid would probably not consider paying for a prosthesis for somebody with Angiosarcoma, because they would see it as a waste of time. In my case, lack of a prosthesis will have little effect on my long term health. His opinion is that Medical Aid will only pay for a wheel chair or crutches.

Then more bad news. Because Medical Aid would not pay for a prosthesis, there was no need to pay for the surgery required to be able to mount a prosthesis onto. Medical Aid would probably only pay for a through-knee amputation.

Amputation at the knee joint means that no thigh muscles or bones are cut. It leaves the femur 100% intact, and usually leaves the knee cap. This reduces the hospital time significantly because the healing is only the skin wounds and sutures. Unfortunately mounting a prosthesis on the old knee joint is hard to do.

The through-knee stump is not padded with muscle, only skin at the bottom of the femur. Also it is not tapered to allow a prosthesis stump socket. If a socket can be made, it will mean that the new artificial knee joint is a few inches below the real knee. Then both legs have knee joints in different places. This makes walking difficult, even with an expensive prosthesis.

There are more through-knee amputations now days. They are cheaper, and heal much quicker. Because of this, they are developing new ways to fit prosthesis for through-knee stumps. There are now web sites that promote through-knee amputations.  That money saving can be spent on a better prosthesis.

We both agreed that removing all known cancer is the main goal. The secondary goal is life style.

So on Friday I have 4 appointments. One with a psychologist, and one with a physiotherapist. Both are required by Medical Aid. Then another with the prosthetic guy to get actual numbers, options, and actual Medical Aid info. Then with the surgeon, to book surgery.

 They wanted to do the appointments tomorrow or Thursday. But tomorrow is chemo day, and I will probably sleep for a few days. I hope by Friday I will be able to drive there, and more important, to think well.
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