General Discussion

(One of the few that grows that quickly - mine doubled in about a month.) If it is sarcoma, get yourself to a sarcoma center. Even cancer centers don't have the expertise to properly treat rare cancer. If not, get to a center that specializes in whatever kind of cancer it is.

And keep on them. If you don't have the energy (or medical expertise), enlist a family member or friend to help keep their nose to the grindstone. Call them daily - or more frequently. If they can't give you an answer immediately, pin them down as to time. Use your electronic medical record (MyChart or equivalent). Doctors are required by law to release records in close to real time - not two weeks after they receive the result. If they refuse, remind them about their obligations under the CARES act. Read the records and do research in PubMed so you can be an effective and assertive advocate for yourself - and can be prepared to ask questions the next time you talk to them - rather than playing catch up. If you don't feel like you can do the reading and research - enlist a friend. Push comes to shove, if they keep pushing you back, mention medical malpractice for allowing the tumor to grow so large - maybe even consult with an attorney. Bottom line - don't take no for an answer, and enlist help if you're just too overwhelmed.

If you find someone in the medical facility who is helpful - get their name and contact information and keep going back to them. Don't worry about bothering them - it's your life, not theirs, on the line.

Good luck with whatever you learn going forward.