Friday, November 19, 2010

I have been waiting to write until all of our second opinions are in, but we are still waiting on a couple.

I met with Hannah's neurosurgeon on Tuesday. He is such a smart man, great doctor and Dave and I really trust his opinion. He said he doesn't believe we are dealing with a recurrence. {{{breathe now}}} He said he typically sees medullo recurrences in 2 forms-either as a solid tumor recurrence within or adjacent to the original tumor bed, or spread throughout the brain. Although Hannah's oncologist said he wasn't concerned because the spots are not in the tumor bed, the neurosurgeon said that is not a criteria for recurrence, it can occur anywhere within the brain, or even in the spine. However, any recurrence that he has seen enhances on an MRI (and Hannah's spots are non-enhancing.) I did question him on this though, because I am aware of other cases in which children have recurred with medullo and their cancer does not enhance. He said he is aware of this, but has never seen it personally, it's pretty rare.

The neurosurgeon did recommend two things-a lumbar puncture and a PET scan. He wanted an lp to check her spinal fluid pressure as well as cytology (check for cancer cells within the cerebral spinal fluid.) I questioned this because Hannah never had cancer cells in her csf (which, by the way would be pretty bad.) He said that doesn't really matter, recurrences act differently and could be present now in the csf, even if they were not there originally. However, if the csf came back clean, that doesn't necessarily mean she doesn't have tumor present, but at least we would know it's not in her csf. This would give us a much better starting point to work from, if it ended up to be recurrence.

A PET scan is a scan where they inject you with a radioactive glucose (sugar) and then a scan is performed. Basically, areas of tumor (cancer) soak up the glucose and are highlighted on the scan. PET scans work differently from MRI's in that they detect metabolic changes in the body, rather than anatomic changes. So, sometimes they can detect cancer or recurrence of cancer before you would see any physical changes on and MRI. PET scans are generally very good at detecting scar tissue vs. tumor activity. Scar tissue has very little metabolic activity while tumor tissue is high in metabolic activity. There are a few drawbacks to PET scans though. They don't do a good job in differentiating cancer from inflammation, inflammation will show up as a hot spot on a PET, just like tumor. This can be misleading.

That is where the steroids come in. Hannah has been on steroids now for one week. We did this to see if it would decrease her symptoms-which they have not. If her symptoms were caused by inflammation in the brain (from radiation necrosis), the steroids most likely would have helped her. But, they did not. Her oncologist originally had said to keep her on them for 2 weeks, but it's been a week with no changes, and we are now weaning her from them. She did fairly well while on them. She had a couple bouts of emotional crying for no apparent reasons and she has been extremely tired. Just within the last couple of days, she has been more hungry than usual. That side effect has lead to her trying some new foods, out of desperation, which has been fun. Tonight she tried sushi for the first time, along with fried rice and miso soup. She said it was "ok" and would not have eaten it had she not been STARVING! She also tried pasta that I had made with a low fat alfredo sauce (ew, white sauce) and although she was grumbling about it, ended eating it. She is not good about trying new foods and hasn't been since she had chemo. Her gag reflex is very strong, and sometimes even the smell of a food will make her throw up, so it's not something I usually push too hard for her to do. Puking when trying to eat is never fun, for the puker or the watchers!

We are still waiting on second opinions from New York City as well as Hannah's radiation oncologists in Boston. We are really interested in their opinions, since if this is radiation necrosis, they should be most familiar with seeing it. Their tumor board met on Wednesday, and I followed up with them Thursday and today, but no word yet. We are taking this as a good sign. If they thought it was tumor, they would be moving a bit quicker-at least that's what we are hoping!

Before we decide on our next move, with an lp, or a PET scan or just waiting to rescan in 2-3 months, we wait. We wait to get those other opinions. Hopefully not much longer.



Anonymous said...

Hang in there!.....I'm with you if they don't get back to you right away-I'd take it as a good sign- you know how it works! And yipee for Dr. Egnor- he is a very nice man!
Love and prayers, and more love and MORE prayers, Anne S.

Mylese said...

Thanks for the update. We've been waiting and praying. Way to go on trying the sushi, Hannah. My kids aren't that brave!!!

Much Love,
The Reyes Family