Crap. CRAP. I just got off the phone with a representative from UCLA Neurosurgery. It looks like I have my third recurrence. I don't understand how University of Washington could have reviewed my most recent scan to past scans and felt there was no recurrence, yet UCLA is confident the tumor has grown.
I need more information. I've asked for copies of the notes from the UCLA tumor board, and their radiology review. I've asked for a callback from one of the doctors or physician's assistants, since Dr Liau is too busy to handle me personally anymore. I worry that this is going to turn into a thing. A frustrating thing where I will need more of their scientific reasoning, and proof that the tumor has grown. That I will need to see measurements, and assessments. What about a DOPA-PET scan. Remember that scan that I took in LA back in October of 2013? It's a special scan for low grade gliomas that will differentiate between tumor and scar tissue, clarifying the MRI images. Why didn't they ask for that? Do they think that my tumor has advanced in stage? (Uh-oh.)
I'm not surprised that the tumor has grown, it's what they do. But I'm not going to start a treatment program based on an office worker's forwarded information. I want to talk to the doctors, and the decision makers. I want to talk to people that can answer all of my questions. I am a patient, and I respect my doctors, but insurance, and our money goes to pay their bills. I deserve answers. Doctors are just contract workers. I think it's always important to treat them with respect, but I also believe that we should be treated like peers. If I want/need more information, I deserve to have it.
They would like me to start radiation, and possibly enter into the following clinical trial (clearly I'm going to need more information):
Phase: Phase I
Type: Biomarker/Laboratory analysis, Treatment
Age: 18 and over
Trial IDs: AG120-C-002, NCI-2014-00868, NCT02073994
Type: Biomarker/Laboratory analysis, Treatment
Age: 18 and over
Trial IDs: AG120-C-002, NCI-2014-00868, NCT02073994
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| Here comes another cancer trial, with it, a new motto. |
Jess
ReplyDeleteI am sorry for this report. I respect and admire you so much. You are so right, you have learned it is best to question authority, carefully review whatever feedback you get from different sources, take stock and do research, ask questions, gather information, look out for yourself. You are so capable of navigating through the medical maze and finding the best answers.You are strong and smart and you have a beautiful brain, not to mention a phenomenal heart. Sending you strength, clarity, calmness and faith. Love, C
Dearest Jessica,
ReplyDeleteWe too are sorry for the report. We know you will get to the bottom of all that you need explained. We too respect doctors but feel no doctor should be "to busy" to talk. It's your life and you brain and you deserve to have things fully explained. We pray for you to have the explanations you need in short order so you know how to move forward. You are in our thoughts and prayers daily.
Bless you, Dan and your family.
Dear Jessica,
ReplyDeleteI am so sorry to hear this. You will do fine you are ahead of this unfair game. You are doing the right thing by ask all the questions and keep asking until you get answers. I had to see many doctors before I saw Dr. Liau. If you need any of these doctors names phone numbers or email addresses just let me know and I will get them to you. You are in our prayers
I am so sorry jess! This is tough news to handle but it might still be a mistake considering one team said It was no change. Hang on in their and get confirmation from someone else. As you are doing I'm sure. We are here for you and we feel it with you although I know that's of little conciliation
ReplyDeleteI am so sorry jess! This is tough news to handle but it might still be a mistake considering one team said It was no change. Hang on in their and get confirmation from someone else. As you are doing I'm sure. We are here for you and we feel it with you although I know that's of little conciliation
ReplyDelete