Treatment will definitely be at Dana Farber. It seemed like a no brainer to me, but it's her body, her choice, as the saying goes.

Last week we saw the three doctors - radiation, chemo, and surgeon and the PET scan was done, which showed the 2 tumors we knew about plus a third one. The tumor board meets on April 4. We've heard that surgery might be possible, but it probably won't eliminate the need for chemo and radiation. Not sure when or how the tumor board results will be communicated to us - via phone call or in person. We don't have an appointment set up for that, although we do have others next week.

Before the tumor board meets, she will see the dentist and the surgeon again. An appointment has already been made for radiation mapping on Thursday. If treatment is "just" radiation and chemo, radiation will start on April 22, with a dry run on April 18.

I have many, many questions! What do I need to know to best advocate for my mom? She wants to focus on the best case scenario. I want to plan for the worst and hope for the best. What questions should I be asking and services should I be seeking? How best can I communicate appointments, etc. with the multiple family members who need to know?

For people who've done chemo and 35 weeks of radiation, how many needle sticks did you have? She doesn't want a port, but she has limited vein access. I would like to give her accurate information so that she can make an informed decision. She's concerned about scarring and cleaning the port (although I believe the doctors said that would happen at the treatment center).

Thanks in advance!


Little Bird, CG to mother, diagnosed March 15, 2013, age 70, non-smoker, non-drinker
BOT, HPV+
Cisplatin and 35 days of radiation, completed June 13, 2013.
Looks like they got it all. (knock on wood)