To Radiate or Not to Radiate — That is the Question

Posted byJessica

I’ve been agonizing over whether do pursue radiation.  Here are my own arguments for waiting and seeing (not radiating) and for radiating now.  I’m now 70/30 against radiation.  I think Andy is 60/40 in favor of radiation.  If we plug our nose and jump, which way should we go?

Wait and See (Do not Radiate Unless it Comes Back a 3rd Time)

  1. Supratentorial cortical ependymomas are curable by a gross total resection (it is a “surgical disease”).  We had a “name brand” neurosurgeon – the best in the world.  If anyone can get a gross total resection, it’s him.
  2. The first time around, we were told that there was an 86% chance of cure with the first gross total resection (of course this was based on a very small data set).  It’s difficult to understand why, given that last time wasn’t (in retrospect) a gross total resection, the 86% figure wouldn’t apply this time.  Another article Dr. Bendel provided us said that 25-33% of patients can be cured by complete resection alone.  These children are probably the ones who got the perfect surgery.  Maybe the 2nd time was the charm.
  3. This 2nd surgery should have been an easier surgery to get a gross total resection because (1) the tumor was only about 1 cm, instead of 3-4 times that in the first surgery; and (2) the tumor the 2nd time was characteristically sticky like ependymoma cells and came out in more of a big chunk, unlike in the first surgery where it came out in little pieces, which made the 1st one harder to remove.
  4. Jude’s tumor bed (which is hopefully empty) is in a great location for surgical access and not too close to vital brain functions.  There is a 95% chance that if the tumor recurs, it will recur locally, making a 3rd surgery possible and likely to result in gross total resection.
  5. Neuro-type doctors do not like radiation in young children.
  6. Andy and I both don’t want to radiate unless we have to.
  7. Although we were initially told radiation is a 1 shot deal (Dr. Sullivan).  It appears it may be a 2 shot deal (Dr. Buchsbaum).  According to an article Dr. Bendel provided us, “in striking contrast with other pedicatric tumors” ependymoma tumors “can relapse even after several years.”  Do we want to waste one of our radiation attempts when we have a great surgery that could be the cure we are hoping for?
  8. Radiation is not a guaranteed cure.   I found an article that said that ependymomas are “insensitive” to radiation.  Dr. Bendel said that we don’t know for sure that radiation is helping that it “could just look like it’s helping because so many get radiation.”  There is a 20-30% chance the tumor will come back after radiation, according to both Dr. Bendel and the radiation oncologist in Indiana.   The doctor in Indiana even only guaranteed the 70-80% cure rate for 5 years.  After that, all bets are off.  My gut reaction is that these ependymoma tumors come back if they want to come back – they do not care what you throw at them.
  9. There is a 95% change of local recurrence (Dr. Bendel’s gut reaction).  I saw a paper that said 90% chance of local recurrence.  So, if it came back, it would most likely be local and we’d do another surgery and then radiate.  Jude’s tumor bed is not associated with the ventricle, which makes spreading less likely.
  10. Dr. Bendel said that waiting and seeing instead of radiating at this point “would not be a bad decision.”
  11. Dr. Nagib initially favored waiting and seeing on the tumor that was just resected.  In other words, we could have let it run amuck until mid-September.  If we decide against radiation, we will follow Jude closely with MRIs every 3 months and will catch anything early and then have an easy decision to pursue radiation after any 3rd surgery.
  12. Dr. Bendel hesitated when asked whether she would radiate her own child at this point.  Clearly, she would struggle with this decision for her own child, just as we are.  This is not a clear-cut decision.
  13. The cancer cells have been behaving as good as we can expect from them for this past year and a half.  They did not spread.  They did not mutate further.  Both the pathologist at Children’s and the pathologist at Johns Hopkins said that the pathology is still Type II (not Type III or Type 2.5).  In addition, the cells are looking the same as they did under a microscope with respect to histology.
  14. Waiting and seeing has the same risk that we’ve been taking on for the past year and a half.  In other words, nothing changes, except that we are more cognizant of the risks.
  15. Radiation has some bad side effects – secondary brain tumors (Dr. Sullivan said 1%; Dr. Buchsbaum said 3-5% and when I said that sounded higher than I had heard, he said maybe it was 1/3 of that given that we would be doing proton not photon radiation); stroke from vascular changes (1%); fine and gross motor skill impact likely (Dr. Sullivan: “He won’t be the best athlete or the most coordinated person.  But, maybe you won’t notice a difference.”); hearing loss in the left ear to some unknown degree; maybe more seizures per Peter Clarine (Dr. Buchsbaum wasn’t sure if radiation increases seizures, but Peter Clarine said he’s seen it in practice); growth issues that can be cured with medicine; attention deficit type issues possible.  Dr. Buchsbaum had not reviewed the scans so he was relying on me to tell him the location of the tumor so his view on side effects are subject to change.
  16. Only 2 things to worry about if we wait and see – coming back and spreading.  With radiation, I have 4 things to worry about – coming back, spreading, secondary tumor and stroke and the minor side effects.
  17. There is not a ton of data on the long term effects of proton radiation since it has not been done for a long time.
  18. Radiation will hit billions and billions of Jude’s healthy brain cells since he’d be radiated at a 5mm-7mm margin around the tumor bed, at maybe 3 different angles.
  19. There are 2 other documented cases of patients trying wait and see that have worked out well, but for 1, the follow-up is only 15 months.
  20. An article Dr. Bendel provided us says that deferral of radiation is a “safe option” since recurrence is usually local.  But, they were not specifically addressing wait and see at recurrence.
  21. An article I found said with respect to supratentorial, low grade tumors, “After gross total resection these patients can do well without adjuvant radiotherapy.”  Admittedly, they were not addressing recurrence.  But, clearly we did not get the gross total resection the first time.  How comfortable are we that we got it this time?
  22. I found a 2009 Case Report from India that says, “Even in the presence of recurrence some authors suggest total excision by a second operation.  Thus, the option for postoperative radiation is only for high-grade tumors and tumors in locations where total excision in not possible.”  (Citing an article Dr. Bendel provided us called “The importance of surgery in supratentorial ependymomas, Long-term survival in a series of 23 cases).
  23. An article I found from about 2009 said that, “Ependymomas are known to be insensitive to radiation therapy.”

Radiate Now

  1. It would increase the chance of a cure by some unknown amount.  We were told recently if we had done radiation after the 1st surgery (which wasn’t even mentioned as an option), it would have increased the cure rate from from 86% to 95% (that is, a 9% increase in the cure rate).  The radiation oncologist in Indiana thought it would increase the cure rate by 50% this time around.  Our oncologist’s gut reaction is that it would increase the cure rate by 10-40%.
  2. Our best in the world neurosurgeon thought he got a gross total resection last time and clearly some microscopic cells were left behind.
  3. It’s very difficult for a human to get a gross total resection.  There are 4 million cells in every cubic millimeter.  Although our surgeon did the surgery under a microscope, he could have easily left behind 50,000 cancer cells.  It takes between 5-10 million cells to be seen on an MRI so even the intraoperative MRI that scanned Jude before closing him up would not show cancer cells unless there were 5-10 million of them clumped together.  An article I found said, “It is generally agreed that a complete resection – i.e., one that results in a very low probability of leaving even microscopic residual tumor – is rarely achieved in ependymoma (but this is from 2002 and maybe advances in surgery have been made in the 10 years since then).
  4. We were fortunate that the tumor played nice and recurred locally.  We could zap it now before it tries to spread.
  5. Radiation now will increase the likelihood of a cure and decrease the likelihood of another surgery and each time the tumor comes back and a surgery is required, studies have shown the patient drops 1-2 IQ points.
  6. I know this shouldn’t enter into the equation, but we’ve met our outrageously high family out-of-pocket maximum for 2012 so the radiation would cost us nothing.  But, I don’t want to radiate my kid’s brain just because it’s free this year.
  7. I know this shouldn’t enter into the equation either, but the radiation treatment is available to us now – it is covered in-network under an unusual provision in Dorsey’s health plan.  Not every plan would cover this treatment and not every plan would cover it in-network.
  8. Again, this probably shouldn’t enter into the equation, but if health care reform is declared unconstitutional (we’ll know on Monday or so), then plans would be able to have lifetime maximums again.  Dorsey would likely add back its $1 million lifetime maximum.  Jude is probably at least ½ way towards meeting that maximum after this 2nd surgery.  The radiation, if done in a different year because the cancer popped back up, could put us over the $1 million lifetime maximum that Dorsey’s plan would have and I’d have to scramble to get a new job with health care coverage to avoid going bankrupt with medical expenses.  And, it’s quite possible that not many plans would cover the proton radiation treatment.
  9. In writing, our oncologist said radiation was his “best chance of cure.”
  10. A 2nd option from our oncologist’s peer in Denver (although maybe not with all the facts) is that, “To be honest it would make me nervous to not do radiation.  However if a family insisted I would agree with the proviso that one could not guarantee that would not upgrade if there was another recurrence.”
  11. It is the standard of care upon recurrence in this situation.  But, this situation is not very prevalent – maybe 25 kids world-wide and even less in this location of the brain.
  12. The same cells that were hiding from Dr. Nagib the 1st time could still be hiding from him.
  13. We would feel like we did all that we could do to get a cure for our precious Jude – 15% of kids with supratentorial cortical ependymomas die of their tumor somehow and we don’t want Jude to be one of them.
  14. We would be listening to the doctors who are the most informed about Jude’s condition.
  15. This would be the most conservative treatment option, at least with respect to the ependymoma and disregarding the side effects of the radiation.
  16. There is maybe a 30% chance that any tumor cells left behind will morph into a more aggressive Type III tumor if they are still hanging out (Dr. Bendel’s gut reaction).
  17. There is a 5% chance that the tumor will spread if there is any left.  This would likely be fatal.  However, this same risk of spreading remains if the tumor comes back after radiation.
  18. The first surgery created a permanent tunnel from the surface of Jude’s brain into the tumor bed.  It is possible (5% chance) that any tumor cells left behind would seep out to the surface of the brain and then that would be deadly.
  19. Dr. Sullivan (Abbott radiologist) and Dr. Buchsbaum (Indiana radiation oncologist) both said they would radiate their own children at this point.
  20. Dr. Buchsbaum (Indiana radiation oncologist) said that if we don’t radiate now, we would be “playing Russian roulette” with Jude’s life.
  21. The worst side effects (stroke and a 2nd malignancy) are unlikely to occur.
  22. If we feel like we’re going to have to radiate someday anyway, maybe now is the time since it seems that waiting won’t decrease the risks of radiation unless we made it to age 16 or so.