Neuroblastoma

Neuroblastoma and Liver Lesions

Mark Dungan — Tue, 24 Aug 2010 10:30:00 GMT

Liver lesions are a relatively common finding on follow up scans for children with high risk neuroblastoma. While they certainly are not found on every child, there are some that will experience this scary finding. It occurs frequently enough that we thought it would be helpful to write an article which details what you need to know - both about liver lesions in general and how they can relate to neuroblastoma. The good news is that, for many, these lesions turn out to be benign. For many, these are simply a side effect of treatment which require little or no treatment at all.

Here is what you need to know:

There are many causes for liver lesions. They can include malignant causes such as cancer, or benign causes like cysts, hepatic adenomas, hemangiomas, focal nodular hyperplasia, or infectious causes.

As for the frequency, it will depend on what kind of liver lesion is in question. It appears that benign causes of liver lesions are more common than malignant ones.

The number of lesions does not normally point to a diagnosis.

To my knowledge, benign liver lesions do not "change" into cancer. It is either cancerous or not from the beginning.

Treatment depends on the lesions type and size. Some lesions, such as cysts are simply observed. Other lesions may be resected, based on what it is and the size.

With no symptoms and normal liver function tests, the chances for malignancy is decreased. Hepatic hemangiomas are the most common benign liver lesions. In one study, 72 percent of people who were referred for liver lesions turned out to be hemangiomas. The prevalence of hemangiomas range from 0.4 to 20 percent in the general population.

For further study, an MRI can help to further define the lesion. A fine needle biopsy can be considered for further evaluation. Most hemangiomas are asymptomatic and have a good outcome. If it causes discomfort, there are a variety of surgical and non-surgical techniques to treat the lesion.

Hemangiomas are non-cancerous tumors consisting of a collection of blood vessels. They can be found throughout the body - on the skin, in the lungs, and commonly in the liver. They often occur as single lesions, but can also be numerous. Typically, liver hemangiomas do not cause symptoms and are found incidentally when an ultrasound, CT scan or MRI of the abdomen is completed. Hemangiomas of 5 cm or greater can cause symptoms, although even these are usually asymptomatic.

Once confirmed, these tumors usually do not require follow-up. Liver function tests are normal in patients even with large hemangiomas, so there is no need to repeatedly check these. Patients with large tumors may be followed for worsening of symptoms and for any change in size on imaging. There is no treatment for hemangiomas except for surgery in very rare cases. Surgical intervention is often avoided if possible.

This PDF has some pretty good basic information about different types of non cancerous liver lesions.
http://www.cpmc.org/advanced/liver/patients/topics/noncancerous_lesions.pdf

Finally, on to neuroblastoma related liver lesions. Here are some interesting abstracts that describe some of the liver lesions as they relate to neuroblastoma therapy.
http://www.ncbi.nlm.nih.gov/pubmed/19369017
http://www.ncbi.nlm.nih.gov/pubmed/18949676

While liver lesions can be a very scary finding on any post treatment scan, we have illustrated some of the frequent non cancerous findings. If your child with high risk neuroblastoma has lesions like the ones described above found by CT but no supporting evidence found by MIBG you may have reason to take a deep breath.

For once, it may not be the worst thing you can think of.

Why Neuroblastoma Screening Doesn't Work

Mark Dungan — Tue, 26 Jan 2010 15:58:00 GMT

Late last week I read a great article on *** cancer screening. Of course, I read the article because my little word search of it also included the word 'neuroblastoma.' Regardless, the article brought up some very important points that I think are often missed by parents of a child with neuroblastoma. The subject is this neuroblastoma screening.

What if we could catch neuroblastoma more quickly? What if we could keep a stage 1 from becoming a stage 2, a stage 3, or even a stage 4? What if we could catch kiddos even before the neuroblastoma was really showing at all?

It seems an easy enough solution. If we could just catch it earlier, it would be easier to defeat and it would spare children a ton of toxicities.

It is this line of thinking that lead many to raise research funds for prescreening and apply pressure to institutions to start prescreening.

The problem is that in neuroblastoma this line of thinking was misguided. The prescreening model did not work in neuroblastoma. In fact, believe it or not, prescreening for neuroblastoma caused more deaths and saved less lives.

There are many reasons for this seemingly counter intuitive finding. The first issue relates to the disease itself. Early stages of the disease are very different from the later stages of the disease. They are so different that there are many that believe that they may in fact be different diseases. In other words, if you were stage 1 you were probably always destined to be a stage 1. While the tumor may grow this form of the disease just doesn't possess the metastatic and deadly potential of the stage 4 disease. On the other side of this coin, if you had stage 4 disease you were probably, from the very beginning, always destined to have the most aggressive form of the disease. At the very beginning, it was probably already already showing the aggressive characteristics that make it so deadly. In other words, catch it early or catch it late, it is believed by many that you would always have stage IV disease. That form of the disease is that quick and that aggressive.

It is this issue, among others, that was experienced in screening for neuroblastoma. Several studies used urine tests to screen for neuroblastoma. The good news was that they caught a lot of it. There are reports that neuroblastoma incidence nearly doubled. The problem though was that they were not able to differentiate the "good" neuroblastoma from the "bad" neuroblastoma. In fact, many of these neuroblastomas went away on their very own. What we ended up discovering was that there was significantly more "good" neuroblastoma than we previously knew about.

Unfortunately, once we knew these kiddos had neuroblastoma we had to do something about it. We had no idea which kids had the good form and which kids would develop the bad form. So we treated them. There were hundreds of kids that received treatment for neuroblastoma that would have certainly gone away without any treatment what so ever. These kids were now scarred for life with side effects - unnecessarily. Worse yet, there were many that died - not from the disease but from the treatment. Yes, children died that would not have because we screened them. Had we not screened them, their tumors would have spontaneously regressed and those children would be alive today and those families would be whole.

Worse than that, the screening did nothing to increase the survival rates of children with stage IV disease. Those children still lost their battles in record numbers.

In the end, what we found was that by using screening techniques we were able to find a lot of the "good" neuroblastoma but we really did not find any more "bad" neuroblastoma. Worse, when we did get a head start on the disease treatment did not appear to have any impact on survival.

Dr. Archie Bleyer was one of the oncologists involved in the studies years ago that evaluated screening for neuroblastoma in children. I think he stated the cost of screening in neuroblastoma best.

“Once we diagnosed neuroblastoma, we had to do something about it,” Bleyer said. “And I have to say we killed some kids because of it.”

While I wish there was a tool or utility which could help us identify the "bad" neuroblastoma more quickly, their simply is no such tool available today. The good news is that there has been much research on new methods of identifying the worst cases of neuroblastoma. It will take time though before anything is capable of finding the answers we are looking for.

In the meantime, don't beat yourself up. Most likely, screening would not have helped you and it probably would have cost some other children's lives unnecessarily.

...(read more)

Neuroblastoma's Shot at $50 million

Mark Dungan — Fri, 15 Jan 2010 16:01:00 GMT

I received an email late last night from Gavin Lindberg. It was a press release from the DOD (Department of Defense) announcing its Peer Reviewed Medical Research Program (PRMRP) funding opportunities for 2010. The announcement stated that the Fiscal Year 2010 (FY10) Defense Appropriations Act provided $50 million to the Department of Defense Peer Reviewed Medical Research Program (PRMRP).

The vision of the PRMRP is to identify and fund the best medical research to protect and support warfighters, veterans, and all beneficiaries and to eradicate diseases that impact these populations. The PRMRP challenges the scientific and clinical communities to address one of the FY10 congressionally directed topic areas with original ideas that foster new directions in basic science and translational research; novel product development leading to improved therapeutic or diagnostic tools, or improvements in clinical policies/guidelines; or clinical trials that address an immediate clinical need.

How does this impact neuroblastoma, you ask?

Well, for the second year in a row, neuroblastoma was selected as one of the 19 FY10 PRMRP Congressionally Directed Topic Areas. This means neuroblastoma has its shot at grabbing its chunk of $50 million dollars of research dough.

This is no small feat and while it is no guarantee of neuroblastoma funding it is an incredible opportunity for researchers studying neuroblastoma. It is yet another alternative for funding and, in a world with a weak economy and ever-shrinking funding pools, this is a huge coup for our researchers.

This opportunity is due in no small part to the work of another father of a child with neuroblastoma. While I still do not completely understand exactly what he does in Washington for a living, I do know that it was due to a large part of his effort that neuroblastoma was included in this exclusive list.

Thank you Gavin.

Antibody-based Immunotherapy Increases Event-Free Survival of Patients with High-Risk Neuroblastoma by 20%

Mark Dungan — Sun, 02 Aug 2009 13:36:00 GMT

Results of a Phase III clinical trial presented at the 2009 American Society of Clinical Oncology meeting (J. Clin. Oncol. 27, S15; 2009) show that an antibody-based immunotherapy increased event-free survival of patients with high-risk neuroblastoma by 20%.

Neuroblastoma is a cancer of the nervous system that is difficult to treat and largely afflicts young children. Current treatment for high-risk neuroblastoma is based on surgery, intensive chemotherapy with stem cell rescue and radiation therapy. However, the disease often returns and only ~30–40% of patients survive. As Alice Yu, Professor of Paediatric Haematology and Oncology at the University of California in

San Diego and the Moores Cancer Center, and lead author of this study, points out: "There has been no improvement in the outcome since the benefit of bone marrow transplant followed by isotretinoin was demonstrated a decade ago". There is therefore a clear need for novel approaches.

Yu and colleagues evaluated an immunotherapy regimen based on a chimeric monoclonal antibody (mAb) known as ch14.18. It targets GD2 — a glycolipid expressed on neuroblastoma cells that inhibits the immune system from attacking cancer cells — and induces antibody-dependent cell-mediated cytotoxicity (ADCC) towards GD2-expressing tumour cells. The mAb was combined with granulocyte–macrophage colony stimulating factor (GM-CSF) and interleukin 2 (IL-2), as previous studies have shown that such immunomodulators can improve the anticancer efficacy of mAbs by increasing the number and activity of effector cells.

In the trial, which involved 226 patients who had been newly diagnosed with high-risk neuroblastoma, immunotherapy added to a standard treatment regimen using isotretinoin was compared with standard treatment alone. After 2 years, event-free survival was 66% in the immunotherapy group versus 46% in the standard treatment group, and overall survival was 86% in the immunotherapy group versus 75% in the standard treatment group. As most (>90%) relapses occur in the first 2 years, this result reflects a significantly improved cure rate. The main side effects reported in the immunotherapy group included pain (21%), vascular leak syndrome (7%) and allergic reactions (7%). The use of narcotics and close monitoring with careful supportive care can help minimize these, says Yu.

Overall, "these findings present a clear paradigm shift and establish immunotherapy as a cornerstone of high-risk neuroblastoma treatment. This immunotherapy regimen will now be standard of care for children in first remission," says John J. Maris, Director of the Cancer Center at The Children's Hospital of Philadelphia. "The biggest challenge for the paediatric oncology community is that the antibody is in limited supply and no commercial partner has been identified."

In addition to demonstrating the benefits of combining IL-2 and GM-CSF with a mAb for the treatment of cancer, "this is the first time a mAb targeting a glycolipid is shown to be effective," says Yu. Currently, all FDA-approved mAbs or vaccines for cancer are directed against protein antigens. As GD2 is overexpressed in malignant melanoma, osteosarcoma and small-cell carcinoma of the lung, these findings suggest that this immunotherapeutic strategy could be applied to other types of cancer.

A New Neuroblastoma Vaccine

Mark Dungan — Tue, 28 Jul 2009 11:47:00 GMT

Last week a new vaccine trial opened for children with neuroblastoma. While I am yet to form an opinion on this particular option, I thought it was certainly worthy of mention. It may very well be an interesting option for you to discuss with your child's oncologist. But, act quickly, this one will likely be gone fast.

The trial "A Phase 1 Study to Determine the Immunologic Effects of a MAGE- A1, MAGE- A3, NY-ESO-1 Vaccine in Patients With High Risk Neuroblastoma, Osteogenic Sarcoma, and Rhabdomyosarcoma" is being offered at Penn State Hershey Children's Hospital. The purpose of this phase 1 study is to determine the safety and immunological effects of a new antibody targeted dendritic cell vaccine. The hypothesis behind the vaccine is that it could reduce the risk of relapse.

The study is in two parts. First, each patient will be screened for the presence of 3 antigens, MAGE-A1, MAGE-A3, and NY-ESO-1. These antigens can be found in fairly significant quantities on neuroblastoma, rhabdomyosarcoma, and osteogenic sarcoma cells. 70% of neuroblastoma tumors will express at least one of these antigens. Those testing positive for one or more of these antigens will then be consented for the treatment phase. An individualized vaccine will be developed and administered using your child's owndendritic cells. After about 1 month, each patient will receive a series of 3 vaccines containing 3,000,000-5,000,000 peptide pulsed dendritic cells at two week intervals. Prior to injection they will also receive Imiquimod, a topical cream, which is believed to help the immune cells travel to the tumor.

Understanding how tumor cell antigens and dendritic cell vaccines work together is a bit of a complicated subject. Essentially, dendritic cells break the antigens on the cancer cell surfaces into smaller pieces. The dendritic cells then act as most-wanted posters for the immune system, displaying those antigen pieces to the killer T cells. To make a dendritic cell vaccine, scientists extract some of the patient's dendritic cells and use immune cell stimulants to reproduce large amounts of dendritic cells in the lab. These dendritic cells are then exposed to antigens from the patient's cancer cells. This combination of dendritic cells and antigens is then injected into the patient, and the dendritic cells work to program the T cells, hopefully, forming an attack against the tumor cells.

Most important to any family of a child with neuroblastoma, however, are the questions of:

Will it work? and
What are the risks?

The answers to these questions are relatively unknown. Dendritic cell vaccines hold much promise but have, thus far, shown fairly lackluster performance in practice. However, recently there have been several examples of these vaccines providing the immune responses that we are looking for. There are even examples, in other cancers, of increased survival and reduced rates of relapse using this type of strategy. Side effects for vaccines such as this tend to be minor. Mild fever, muscle pain and fatigue are often seen. However, as with any phase 1 trial, the true risks are unknown. Only by talking to your oncologist or speaking with the trials primary investigator will you be able to get a good understanding of the risks and rewards of a trial such as this.

More information and contact information on this trial can be found here:
http://clinicaltrials.gov/ct2/show/NCT00944580

Another Perspective on Treatment Decisions

Mark Dungan — Thu, 02 Jul 2009 13:08:00 GMT

As parents of children with neuroblastoma, we often make treatment decisions based primarily to two factors. The first is based on response. What treatment has the highest response rate? What treatment is going to create the biggest change? The second thing we consider is toxicity. What side effects come with this treatment? What is the impact on quality of life? Will something bad happen? We then take these two factors, mush them up in our brains, and spit out the answer for what treatment plan we follow.

Done. Easy answer.

Hold on. Unfortunately, this formula misses some very important considerations and often can lead you astray. The fact is that we don't live in a world which only has two factors - response and toxicity. Every decision we make has implications which will impact future decisions. In this way each decision also caries a significant risk factor. There is risk that a particular choice will make you ineligible for something later on down the road. There is risk that your child may not respond or the risk that something will happen that will preclude you from getting treatment. As I will try to demonstrate today, these are all extremely important factors that should weigh heavily on any decision. In today's high risk neuroblastoma treatment reality these may even be the most important factors to consider.

This is where my difference of opinion lies.

One of the appealing aspects of treatment at Sloan Kettering is the promise of no transplant. According to them, in their experience, they do not believe a transplant is necessary when antibodies (3F8) are used for consolidation of minimal residual disease. I should point out that this is in direct contradiction to three large randomized phase 3 trials which showed that transplant increased event free survival by 11% or more (these trials did not include the use of antibody, however.) Regardless, when analyzing the toxicities of transplant it is easy to be swayed by the allure of not having to have a transplant and the hope of achieving the same desired result. It is very appealing. People evaluate the response - children appear to achieve remission in similar numbers - and then they evaluate the toxicity - it isn't a transplant. The problem with this type of thinking is that it misses some extremely important factors. First and foremost, it misses the point that you are giving up on the proven standard. This is not additive treatment, this is "instead of" treatment. By not transplanting, you are risking the loss of an increase in survival of over 10%. It may very well turn out that the doctors at Sloan may be right. Someday, it may be proven that a transplant is not necessary given the medical technology at that time. But, in the meantime, you are very definitely adding more risk to your child's chance of success by not transplanting. You are gambling a 10 to 15 percent increase in survival in the hope that this other treatment (antibodies) will do the same job - a job that they are yet to be proven to accomplish. I think every one would agree that, in this case, if you looked at it from the perspective of this type of risk (the risk of decreasing survival), the best option would be to do both.

Another risk that many people do not think to consider is the risk of not being able to receive the treatment. This is one of the saddest realities of all. What if you decided to go to Sloan Kettering? What if you decide to reduce your risk of toxicity from transplant and forgo it? What if you decide to use 3F8 for consolidation instead?

What if you HAMA'd in the first or second round precluding further treatment?

This risk is significant. It happens. There are kids sitting in this scenario at this very moment - kids that could have been transplanted and received antibody. But, the question remains. You gave up transplant in the hopes of reducing toxicity in favor of a relatively unproven treatment (for this purpose) and now, because of a fluke, because of an immune reaction, you are no longer eligible to receive that treatment either. Or, you are no longer able to receive that treatment again with out some significantly high doses of chemotherapy - high doses of chemotherapy which offer significant toxicity but still do not provide you the benefit of a transplant or any guarantee that you will be able to get enough antibody to get the job done. In this scenario, the nightmare, you have actually increased your risk on at least two fronts. Your decision cost you the benefit of a transplant (11%+) and the benefit of antibody (20%). By choosing this route you have effectively reduced your chances of survival by over 30%. Could you go back and do a transplant? Probably. But, would you become eligible for the ch14.18 antibody? Not today.

That is a big gamble - an especially big gamble for something that is yet to be proven.

The third risk is the risk of treatment failure. I know this is something that no one wants to consider but, it too does happen. In fact, I have seen some articles quote numbers as high as 20% (or higher) of patients fall into this category. In this scenario, the standard therapy has failed in induction. You have done your due diligence yet, even given the best medical knowledge we have, your child has failed induction. What are the risks here? What impact did your decision of which path to take have in this scenario? I think the risk here is in eligibility. You see, if you fall into this category of patients the most important thing you can have is options. By participating in a standard induction you are naturally eligible for several options that you might not be otherwise. An example of this would be an MIBG/transplant regimen. This type of transplant has been extremely effective for a subset of these individuals. In fact, for some, this was the ticket that got them back onto the road to survival. I am not advertising this trial but simply pointing out that this is a treatment that is available and effective for a certain subset of the non responding population that may not be available to them if you decided on a different path from the beginning. It is just one example of risk in this group of patients.

Finally, before I run out of internet, I would be remiss if I did not address the most obvious but less publicized risk. By choosing not to participate in a COG trial, at this point in time, you run the risk of not being able to receive the ch14.18 antibody. This is the one antibody that has been proven in a randomized phase 3 trial to increase survival by an additional 20%. One could easily argue that choosing not to utilize ch14.18 carries inherent risk.

Now, please, don't send me email telling me that 3F8 can do everything that ch14.18 can do. Trust me, I know what it can do. The point is that by choosing 3F8 over ch14.18 you are taking on more risk. At this point in time ch14.18 is a proven commodity. We don't know whether 3F8 works better, the same, or worse. Furthermore, with 3F8, we also have the additive risk of an early HAMA - a risk that is greatly minimized by the ch14.18 antibody.

You see, today is not about response or toxicity. My arguments have absolutely nothing to do with which treatment is better. That is another discussion entirely. This entry is about reducing risk and increasing options.

Risk is the third ingredient of the treatment decision that we often forget to consider fully. This is unfortunate when, as I have demonstrated today, it just might be the most important component.

The First Unwritten Rule of Neuroblastoma

Mark Dungan — Mon, 09 Feb 2009 22:54:00 GMT

First, a disclaimer, I am a dad. I am not a medical professional. Verify everything I say with a medical professional who is an expert in neuroblastoma. Second, if your oncologist tells you I am wrong, ask another one - ask a neuroblastoma expert.

The First Unwritten Rule of Neuroblastoma is regarding complete surgical resection. This is a tough subject. The leaders of the neuroblastoma community are split on this topic. Although there is a sizable body of research on this topic there is no definitive answer in literature. Furthermore, if you chose to read the literature on this topic, be skeptical. Just when you think you understand it, you will realize that the opposite is also true. Both sides of this issue are right. Finally, I am not advocating radical surgeries that put children's lives in more risk.

There is a safer plan.

First, there are two really incredibly well-respected big neuroblastoma brains that are at odds on this topic. I deeply respect both of them and I honestly believe they are both right. These are Dr. Sue Cohn and Dr. Mike LaQuaglia. For the sake of argument, I believe that Dr. Sue Cohn would probably disagree with some of what I have to say. I have incredibly deep respect and admiration for her.

Technically, she is smarter than me and, frankly, she is much better dressed as well.

Let's begin.

My rule is: If your surgeon does not have a strong level of confidence at being able to completely remove your child's tumor, do not walk, run to get a second opinion from a surgeon that is respected as the best in the field of neuroblastoma.

Wow, I could just feel about 20 of my favorite oncologists cringe at that statement. In fact, before I even began to state why I believed this to be true I could already feel my inbox starting to fill up with nastygrams. Just wait, let me finish.

Well meaning physicians do not like statements like this for many reasons. First, they fear that parents will be taking more risks than necessary. They fear that statements like this will raise the incidence of radical procedures that put kids lives in jeopardy. They also fear for those that can not afford to get a second opinion or go to another institution. What affect do my words have on them?

They are right. I have the same fears.

Let's be straight! I am not advocating radical nephrectomies or anything of the like. I am advocating that, if you find yourself in this position, you talk to the best of the best. Period.

You may think that I am saying all of these things because I believe that a complete resection has a higher degree of survival than an incomplete resection. That is not my point. Actually, it is not even my reasoning. Let me explain.

If you look at the research over the years there is actually conflicting data on this subject. Some studies show that complete resections have impact in certain subsets (different stages) of patients and others do not. Personally, I believe that less disease is better than more. I believe that a complete resection has a better survival than an incomplete resection. I can say that the majority of the research bears this fruit out. In fact, Sue Cohn's article in the January, 2006 edition of "The Journal Of Pediatric Surgery" even supports this theory. However, the article's rationale behind the claim that children with complete resections have better survival than those with incomplete resections is smack on. In simple terms the argument is this: the kids that had complete resections had better survival because their disease was less aggressive. They could be completely resected because the disease was not as bad. They proved (small numbers, nothing is truly proven) that the kids that had complete resections had fewer local recurrences. The real determining factor in survival, though, was metastatic relapse (relapse in other parts of the body) not local relapse. However, one could also argue that the presence of local tumor would probably increase the risk of metastatic relapse. Regardless, I think we can see that there are many sides to the issue.

See, it is murky. Yes, it is true. Kids with complete resections tend to do better. However, were they destined to do better in the first place because their disease was less metastatic in nature? Quite possibly! I don't know the answer and this is the reason that my argument for getting a second opinion is not based on this survival statistic.

My argument is based on reality. It is based less on the resection itself and more on what follows. You see, resection is a key decision point in treatment. In many ways it dictates destiny, not necessarily survival destiny although that is a factor. You see, when you don't have a complete resection it complicates everything that follows and more often than not will lead to more toxic therapy that is probably less likely to produce the desired result - a happy, well- balanced and ALIVE 40 year old.

Think about it. Once you have an incomplete resection everything changes. Will a transplant do any good with bulk tumor present? Will it be as effective? Will the radiation be enough to get deep enough to reach far enough to kill every cell. Is every cell in the tumor susceptible to radiation and chemotherapy? What happens when you finish transplant and you still have disease present? You probably will. Is Accutane enough? Do you need MIBG therapy? Post transplant surgery? What consolidates you then?

You see, there are mountains of questions and complications.

Surgery is one decision point you want to get right.

So, yes, I know I have simplified it and generalized some things. Who would want to have an incomplete resection when you could have a complete one.

"I mean, come on, Mark. Just because we want one doesn't mean we get one. We don't get one because we don't have the option."

Wrong! The one thing we have is options. We may not like the options but we do have them. Furthermore, we can all agree that some surgeons are definitely better than others. Some have different styles, some are more aggressive, some are less, and some are simply gifted.

I am a good golfer. I really am. I am impressive. I even played professionally. Now, if we you were going to play in a tournament for $1 million who would you want on your team. Me or Tiger Woods? Tiger Woods, of course! Would it matter if you needed one of us to make a 1 inch put. Probably, not! Either of us could do it with equal prowess. He may be more stylish? He might be more funny? He might even be better to look at. I would probably try harder? But, we would both get the job done. But, if we were on the 18th fairway and all of the money was on the line, there was a gusty breeze and the green was sloping treacherously down towards the water; who would you want on your team?

You had better say "Tiger Woods" or I can't help you.

When the game is on the line, when there is question (any question) get Tiger Woods on your team.

Now, let's talk about what I have seen. I have seen hundreds of kids have incomplete resections that could have had a complete resection had they been in the hands of the right surgeon. I know that sounds arguable but I can't tell you how many second surgeries I have seen (performed by a second surgeon) that produced a complete resection and it had nothing to do with the fact that the tumor "become" easier to resect. I have seen many kids with incomplete resections have local relapses that later had to be removed (and this time by a surgeon that was capable of getting the job done.) I have seen them endure multiple surgeries, mountains of chemo, radiation, and a slew of medications and treatments that put their lives in jeopardy. Where, had they looked elsewhere - had they gotten that second opinion - they probably would have had to only accept a small amount of risk to avoid a relapse and a mountain of toxicity. To be fair, I have also seen the other side. I have seen radical surgeries that have left kids in pretty bad shape for weeks and sometimes months. But, when the experts have been in the room I can honestly say that regardless the cost, most parents still came out with a sigh of relief.

Ask the question! Don't believe any one surgeon. It is too important of a decision. It changes the game. It impacts every decision made from that point on. If you don't do this you will always doubt your decision. You will always wonder. This is the number one regret I hear from other parents.

I offer no guarantee that the best surgeon in the world will be able to resect your child's tumor. I offer no guarantee that the risk of surgical complication will be worth the increased risk of relapse. I have no idea whether the risk of a more radical surgery is as bad as the toxicities from further treatments.

I don't know.

That is your decision.

But, you don't know either. You don't know, until you go ask.

It isn't just the surgery. It impacts everything.

Go do it. Go advocate for your child. Go get the second surgical opinion.

For those interested in finding the very best neuroblastoma surgeons in the world you can find them all over the Internet - one in particular. You can also write me and I will give you a list. However, I will not state them here because I don't want this to turn into advertising for a particular surgeon or group of surgeons. That is not the point.

If your child has a tumor that is not believed to be completely resectable go to the best. Get a second opinion.