Karina's Cancer Blog - Page 3
Childrens Hospitals and Second Opinions
One of the first decisions parents need to consider is where to go for their child's primary management, and whether to obtain second or even third opinions.
Childhood cancer is a relatively rare condition, so generally an involvement of a University-based hospital or Children's Hospital will provide you the greatest experience and access to the latest research and investigational drugs for cancer. Depending on how far you live from such a hospital, it might still be worthwhile to have a close relationship with your family doctor or pediatrician. It is often convenient to be able to check routine lab studies locally, or to even run questions by your regular doctor.
In general, Childrens Hospitals will be much more "kid-friendly". Parents are routinely allowed in with their children for before and after many procedures and during many tests (not so at local hospitals, even well-meaning ones), and this can mean a lot to reduce your child's fears. At Seattle Childrens, we were allowed in for all IV placements and blood draws, and her MRIs and CT scans. In addition, most procedures (even more unusual ones like heart ECHOs) had an option to watch a video or movie during them, and it is amazing how much this made the process much more bearable. Our daughter was able to watch half a Pokemon movie during her PET scan, and The Incredibles during her ECHO. Too bad they don't allow this for more adult procedures! Also, having been on the other side of the table, we know that blood drawers and IV line placers are more relaxed if they deal with children all the time, than if they mostly deal with adults, and only deal with children occasionally. When we were seen initially in a local hospital, we could sense the mild nervousness of the nurses with our 10 year old for IV placement (she had to have many more pokes, too), whereas at Seattle Childrens, one look at her made them relax because she was so "old".
We also researched our daughter's cancer, hospitals, and physicians before deciding on a second opinion. Whether a second opinion is needed might depend on the rarity of the cancer. Because our daughter's cancer is extremely rare (less than 100 per year, even fewer below the age of 12), we made the decision to seek a second opinion in Boston at Dana Farber / Boston Childrens Hospital, although she is currently having most of her studies done at Seattle Childrens Hospital, so she can be at home and attend her regular school.
Many parents are worried about leaving their local supports in traveling possibly across country. It's helpful to know there are many resources available - including discount hotel / housing, and even free flights (see below) for at least two parents accompanying a child with cancer or other serious illness.
Additional deciding factors might include opportunities for novel treatments (for instance, to our knowledge, Dana Farber is the only center providing an immune vaccine option from surgically removed cancer tissue), that often can be found searching the the Oncology department's website under Clinical Trials or Research.
Even so, there are many variable that may come into play with choosing a hospital or site for a second or third opinion. Some families are surprised they may see a resident or fellow when they travel cross country for another opinion, and if appointments are made without specifying a particular attending, it is possible you may see a doctor with little specific experience in you child's cancer.
Some academic or tech-saavy parents may comb research papers to identify specialists in the field of their child's cancer, but even recently-published papers may be from different specialists involved in cancer treatment (for instance radiologists, oncologists, surgeons) and if the paper involves a multi-year review of a cancer type, the information was gleaned over the course of years where treatments and assessments available may have changed considerably.
Regarding out-of-state surgery, this is often a difficult choice because families confront not only the costs of being out-of-state and away from family and friends for the surgery, but also recovery and or rehabilitation time from the surgery. In our case, a second opinion chose us rather than us choosing a second opinion. Because gynecological tumors are rare in children, an adult gynecologist referred our daughter to a specialist in downtown Seattle, and then he told us after looking at her MRI scans, he wasn't comfortable doing the surgery, so we knew we needed to find someone else (we appreciated his honesty).
The choice of a surgeon is particularly important for cancer because he or she has to have experience with different cancers, knowing how much of a tumor margin to resect, what studies should be done beforehand, and how normal tissues could be spared. Usually this will mean a surgeon at a University-based Childrens Hospital, and sometimes more information about the doctors can be obtained by looking at their research interests and even patient forum boards. In general, if you opt for an out-of-state surgeon, we recommend also having an oncologist at the same institution. Ideally oncologist and oncology surgeon have complementary roles and work together. Oncologists may be better at explaining options; some surgeons are better "do-ers" than talkers.