Split 50/50

Well, the radiation and chemotherapy appointments yesterday were enlightening but still not all that helpful.

The first consultations was with the medical oncologist, who discussed chemotherapy treatment. His opinion, based on the pathology that puts my tumor in grade 3 (anaplastic astrocytoma), is that we should proceed with treatment immediately. His theory is that there's so little of it left that it's better to treat it now before it re-grows. My "MGMT methylation" test shows that it would respond well to the chemo treatment. However, there's no way to measure the success of treatment since there is no more evidence of the tumor left on the MRI. There is also no guarantee that the treatment will prolong the time before regrowth, although that is what they assume based on extrapolated data from treatment on grades 2 and 4. No one has a crystal ball though to know when it would have grown back without treatment either. I call his approach "going in with guns blazing" to be aggressive as possible.

The treatment is oral pills every day for the initial 6 week radiation therapy. Then it's 5 days of oral high dose chemo and 23 days off to recover. They do that cycle for 6 in a row, as long as all the blood counts are stable like white blood cells, red blood cells, and platelets. Short term side effects are hair loss, nausea, vomiting, fatigue, headache, blood clots, and bone marrow suppression. Long term effects are the lasting effect of bone marrow suppression. There is also a very small risk that it can cause cancers in other parts of the body (WHAT THE WHAT??).

Then we met with the radiation specialist. He was split himself between treatment and no treatment. Radiation is 5 days a week for 6 weeks. The total amount of radiation given is set by standards and previous testing. It affects the tumor cells as well as a radius beyond that. The astrocytes, cells the tumor grew from, have little arms w/ fingers similar to a nerve cell. They call these tumors "infiltrating" because they branch out into healthy tissue, which is why it's impossible to remove 100% by surgery. The radiation is precise, focal energy specifically aimed at the tumor "bed" (empty space where it was) and the surrounding areas.

Side effects are fatigue, headaches, motor problems, sensory problems, hair loss, and blurred vision. There's also possibility of getting a sunburn-like rash at the site since I'm so fair skinned, but using lotions could prevent the rays from getting in during future treatments so prescription creams are available. There is possibly severe long term effect. Energy could be permanently lower than normal. Also, some people report feeling mentally slower than before. He compares it to ageing 10 years, which doesn't as big of a huge difference for a 30 year old as it does for a 60-70 year old. I would still be able to drive as long as I continue to not have any seizures, which I've been pretty lucky with so far. The radiation does cause some swelling at the treatment site so it's possible it could cause seizures anyway. Plus, I might be too fatigued to drive myself to treatments, especially if they're an hour each way.

I had read that radiation can only be done once, but that's not entirely true. If there is cancer in other parts of the brain, it can be performed there. Although, brain tumors are primary cancer, they don't spread to other areas of the body like other cancers. Also, if enough time has passed for the healthy cells to repair, like 5-10 years, they could do it again in the same area. It is considered one "prescription plan" so it wouldn't be considered a specialist visit every day (although I'd have to check with our health insurance on that).

Again in this case, there is no way to know if it's working since there is nothing to track on scans. He was more conservative than the oncologist. He said that if the tumor grows and causes neurological symptoms like seizures or other things, it could be irreversible anyway, basically permanent brain damage. So either way you're taking a risk, long term treatment effects or permanent damage to the brain. He said "If you came in here and said you wanted to do treatment, I wouldn't tell you that was the wrong answer. If you came in and said you absolutely didn't want treatment, I wouldn't say that was the wrong answer either. It comes down to your own comfort level and what you will regret later on. When it grows back, will you regret not doing the treatment sooner? Or if you have the treatment right away and have long term side effects, will you regret doing it? Which will help you sleep better at night?"

Charles say it would drive him crazy to know there was something growing in his brain and would want to get as much of it gone as possible. He wants me to fully recover from surgery another couple months even to get fully rested and in good shape, then do treatment after the first or second observation scan.

I'm being more conservative with my view on it. I don't want to jump into severe treatments right away. First of all, there's no way to definitively tell if it's working and there is no 100% cure anyway. As someone with an engineering mind, not having quantifiable evidence would be really hard for me. We also don't know when it will grow back. I've had this tumor for over a decade now. It could be extremely slow growing. I could have another few years or even another decade before the tumor grows again. That would be a lot of time with good quality of life if avoiding treatment. There is possibility of long term side effects that aren't reversible. I don't want to seem "slow on the uptake" from this for the rest of my life even if it does prolong my life by a long time. The methylation test being positive doesn't just go away with time. The chemo will be just as effective later on as it would be now if we put off treating. Plus, our children are sick straight from November to April especially with starting full time school in September, so I don't want a compromised immune system during all that.

So basically, the consultation visits raised more concerns than actually answering questions. The chemo oncologist will be taking my case to the tumor board again on Monday and he'll call me back, but the radiation oncologist seems to think it won't help anyway. He thinks the board will be split on their answers with half saying do it and the other half saying don't. So it's up to me. Charles wants me to make up my mind based on my health and mental comfort without taking into effect our finances or family resource situation (childcare and rides). I still find myself thinking about the fact that the bigs start kindergarten in a month, and my supplemental insurance policy would pay benefits in 2 years if we can wait that long.