|From Cell Phone Photos|
I’m not following the normal formatting for this entry because I am only posting this to provide you with the information I received yesterday regarding Sophie’s tumor.
Some of you may recall that the biopsy report we heard a couple of weeks ago was unsettlingly inconclusive. The doctor who relayed that information to me was unaware that her tumor samples had indeed been sent off to another facility for further review, and those results came in a few days ago.
Yesterday, Sophie’s surgeon called to deliver the new pathology report.
The official word is that her tumor was a pilomyxoid astrocytoma, a relatively new classification. A quick Google search revealed a lot of the same information that Dr. Magge shared with me on the phone. The best summary (that I found) can be read in the “abstract” section of this paper. I’ve copied and pasted it here for you:
Pilomyxoid astrocytoma (PMA) is a recently described type of brain tumor. PMA shares similar features with pilocytic astrocytoma (PA), the most common central nervous system (CNS) tumor in the pediatric population, yet displays subtle histologic differences. Previous studies have shown PMA to behave more aggressively than PA, with shorter progression-free and overall survival as well as a higher rate of recurrence and CNS dissemination. These findings suggest that PMA may be a unique and distinct neoplasm. This review summarizes the histologic, clinical, and radiographic characteristics of PMA. In addition, the current treatment options and research endeavors involving this disease are described. Increased recognition of PMA within the medical community has the potential to affect the treatment and prognosis of pediatric low-grade astrocytomas.
Interestingly, this paper was written by doctors at the Johns Hopkins University, the same place that Sophie’s tumor sample was sent for the second biopsy.
The tumor is considered a grade two tumor. Essentially, this is grade two in the four-grade scale that is most commonly used to grade tumors. Grades one and two are considered benign, and three and four are considered malignant. However, benign and malignant are not generally used to refer to brain tumors, as those words tend to be separated into “good” (benign) and “bad” (malignant) categories. In the brain, it does not matter if the tumor is benign or malignant. There are many benign brain tumors that can kill, and many malignant tumors that are easily treated and pose minimal risk to the individual. This is especially true in children.
The main thing to gather from the fact that hers is a grade two tumor is the likelihood that it may recur. Grade one is the least likely to return, and grade four, being the most aggressively mutated type of tumor, is the most likely to return – but chemotherapy and radiation treatments can often prevent recurrence. Dr. Magge consulted with their tumor expert and their joint review of Sophie’s files concluded that she should not need any type of treatment or radiation for the tumor as there is only a small chance that her tumor will grow again.
We will still be meeting with Dr. Magge on the 26th of January, and we may come away with more information then, but the basic plan from here on out is to have her in for an MRI once every three months for the first year after surgery, then depending on how the first year goes, we will generate a schedule for subsequent, regular MRIs. I asked him if those would be once a year, or more or less frequent, and his answer (though not specific) seemed to indicate that they would be less frequent than once a year. Again, we’ll know more after our meeting with him. Dr. Magge has also given our number to their tumor expert and we will be meeting with him (I can’t remember his name) as well.
If you have any more questions, please leave a comment here and I will do my best to answer them (you can expect an email as well if you leave a comment with a question). Most likely, I won’t have an answer, because everything I know for sure is right here. However, we will know more and continue to learn more with time. Thank you for all of your prayers, concerns and support.
We had our appointment with Dr. Magge, and a lot of new information is available.