Hi. Well, I cannot believe it. We got my mom's PET scan results today and they were really good. Long story short is that we went to the doctor for our scheduled appointment and the results were not ready. I wound up getting them in the car as I was driving us home. Anyway, here is what the MO said... The cancer reacted "very well" to the treatment (he said it 3 times) and no need for additional chemo or treatment at this time, but my mom will need follow-up. I asked if there was anything showing activity and he said the only thing was that there were some lymph nodes showing activity, but only enough to be monitored and that the activity could still be a result of her radiation (finished 8/16). She should have another scan in 2-3 months.

I feel like I may have missed a lot when I got the diagnosis. I was in the car and almost in tears as soon as he said "reacted very well" and "no further treatment". I will get a copy of the report next week, but are there other questions I should be asking? I hear a lot of people talk about "clear margins" but does this apply to my mom if she did not have surgery?
Also, does anyone know how long my mom will need to keep her trache in given these results? She sees her ENT surgeon on 10/22 and I am really hoping that he takes it out then. How involved is removing a trache?

Any input would be helpful. We are obviously SO happy with the result. I have been sitting here crying (tears of joy) all morning. I can't believe she did it. I remember crying over Labor Day weekend, waiting for my sister, who was with her at the time, to tell me that she was at the hospital or worse.

Thank you all for your support and help!

Amy

Hi Amy,
I can't answer positively about the trach since I didn't have one but I would imagine that they would remove it once the swelling has gone down. The swelling could by caused by lymphedema or reactions to the treatment. Most here, in her situation, have had their traches removed within a week or less.

When they plan radiation therapy they do extend it to have "clear margins", as in a surgical procedure, as well. The reason for the clear margins concept is that tumors are much like an octopus and have "legs" that spread out.

I turned 60 in June - our generation is tough. Very few people in my high school class have died.

The healing process is slow and tedious and one must be very patient. Your mom probably won't notice any changes for several weeks and then it will be slow in the beginning. She should be doing ok by Christmas if she is careful about thrush and exposure to sick people. Her immune system will take a while to recover.

Hi Amy,
I feel so happy for you and your mom!
My mom still has her trach, her surgery was 9/17, and they have kept it in, think for swelling reasons.
Two weeks ago they changed my mom's trach to one that can be capped during the day, then she had to put the open canula one in at night. Starting today they said for her to leave it capped until she comes in for appt on the 17th.
I don't know why she has the trach still in, the surgeon originally said it would probably be removed prior to her discharge from the hospital. Reading Gary's post above regarding the lymphedema makes me consider why her's was left in, she is experiencing that.
Again, I am so happy for you, your mom and your family. I know how happy our doctor's were with my mom's results...feels good to breathe again.
Love,
Donna