Meeting with the Radiologist for a Consultation

Yesterday we went to the cancer center for the first time and met with our doctors for the prognosis and treatment plan. While the previous doctors staged her at late 1 - beginning stage two, this doctor told us an estimated guess of a stage 3. I was super frustrated with them for this mistake or whatever it is. How can she jump from a stage 1 to a stage 3 based on the same information that they have.

The results from her chest CT scans came back - she has tiny nodules in there which may or may not be cancer. The doctors seem to think that they are NOT but they have ordered additional scans - a PET scan to see in "high definition" what the nodules are in her lungs and an MRI to check to see if the tumor has penetrated any of her brain or any other vital organs near her nose.

I'm super frustrated because, yes while the doctors are humans, don't fucking tell me what stage they think its in if they don't know what the hell they're talking about. The previous doctor should not have told us anything since he's a head - nose - ears surgeon. He doesn't know what the hell he's talking about. He should have left it for the radiologist/cancer specialist to tell us. I feel so misinformed and I had counted and relied on the fact that her cancer stage was in the early/beginning stages. Stage 3 is LATE and therefore has a much decrease in the statistics as far as survival rates for 5 years go. This is ridiculous.

Another ridiculous thing - order all the fucking tests that you know you're going to need. This is the 3rd round of tests that has been ordered for her. Once they found a tumor in her nose and diagnosed it as nasopharyngeal carcinoma, they should have automatically ordered the PET scan and the MRI - AT LEAST the MRI. They know the tendencies for the tumor to be more localized right? So fucking order all your tests at once so you know the whole story and picture before you tell us to come in for a consultation to tell us, "sorry, we don't know what exact stage you're in ... sorry but you have to do more tests because we don't exactly have the full picture yet."

The treatment plan - well, the doctors say that the general treatment is chemo/radiotherapy. Because they have to wait until they get the PET scan and the MRI done. However, generally, radiation is given to the tumor in her nose and on both sides of her neck. Even though there are no tumors in her neck, the doctor says he is 99% sure that there are cancer cells there because this cancer moves to the neck and the lymph nodes there - its just the way it travels. And to make sure that there is on re-occurrence after treatment, it is better to just radiate and treat the neck as well. Furthermore, chemo is supposedly given 3 times during the 7 weeks of radiation: once every 2 weeks.

Mom was so depressed after we came back - this morning it looks like she still is pretty upset. She really didn't want chemotherapy. She also didn't expect that her neck has to be radiated since there was nothing there - or at least the previous doctors told her there was nothing there. However, since this doctor thinks most likely there are cancer cells there + he's now saying that her heck is "questionable" as to whether or not that there are any cancer cells there - the radiation to the neck is appropriate.

Radiation to the neck = mouth sores, no saliva, sore throat - to the point that a feeding tube is recommended. Mom was really hoping that she wouldn't get those symptoms. She says that if she can't eat, how is she suppose to stay strong. She was so upset that she started attacking me (with words) when I tried to tell her that its going to be ok. It was a little bit shocking since she's never really done that before to me. I almost started crying, but I (with much difficulty) let it go.

While before, she has had such a positive mind, this news yesterday has really crushed her spirits. While before, I didn't feel like the need to ask friends and family to call her to come visit, bring her food or to entertain or talk with her - I think she might really start needing it. Her depression yesterday was shocking and overwhelming.

While I was displeased with the way that the doctors have been running the show so far - probably because they told us it was cancer, not that they are particularly doing anything wrong or bad ... our radiation doctor is someone I feel like I like. He is patient, knowledgeable, and ready to answer any questions we might have. He's very calm, gentle and soft spoken. He's also Asian so my parents automatically had a good attitude towards him. Oh Asians!

It should be about 2 - 3 weeks before the actual treatment begins.

Next: MRI scan on Thursday
Next: MRI results and another consultation and simulation of radiotherapy on Tuesday

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