4 ms·
My daughter had cancer. Fortunately, she is still clear, but I have a pretty good idea what you are going through, both emotionally and with respect to finding
by scolson 11y ago
My daughter had cancer. Fortunately, she is still clear, but I have a pretty good idea what you are going through, both emotionally and with respect to finding qualified information. For what it is worth, I am very sorry your family has to go through this diagnosis and whatever comes next. Cancer sucks.
From everything my wife and I could find, there is no such clearinghouse that is publicly available for what is the "best info," or for readily comparing studies. Because the research on treatments is changing so rapidly, it really does take a scientist (read: your oncologist) to filter through the different papers and compare the stage-based 5y EFS rates, review risks of that treatment, and figure out the pro and con to your relative's situation to determine the best treatment protocol.
This is further complicated by the fact that not all protocols and studies are publicly available. Some groups actively hide information from public view to prevent the "Web MD" effect. The treatment protocol we ended up with for my daughter is widely used and studied in some countries, but was never before used at the hospital we were at. We felt very comfortable with it when we reviewed the literature with our hem/onc, but as the doctor was part of a particular oncology group that shares research and studies, only they could find the critical information. At one point I was looking for more in-depth details, and because of the restrictions by the oncology group, our Dr had to be very careful about what they could and could not show us. I could read some studies in their office on their screen, but could never get a copy of the PDF.
Trust in your medical team. If you aren't getting the information your family needs, ask for more. If you still feel like you aren't getting enough information, then maybe re-evaluate if you have the right medical team.
Now, all of this is written as if you get to have contact with the medical team. If the close relative doesn't want you to have access, please respect their right to pursue the treatment your relative and their doctor have selected as most effective for their highly individualized case. Support them in their quest to get the right information, but don't pry and second guess. I come from a family of medical scientists and medical professionals, and believe me, there can be a very fine line between curiosity and help, and prying.
Good luck to you and your family.
- ciupicri 11y agoWhat's the "Web MD" effect?
- shanacarp 11y agoPeople self diagnosing and wanting certain very inappropriate treatments without understanding what's going on underneath. Cancer(s) are different than athletes foot in that sense. You can look picture up on webMD, diagnose yourself, go to the drug store, and buy OTC medication to treat yourself. You can't do that with brain cancers.