Topic: Teddy Update

OMG!  I am going to explode, need to VENT! Teddy was diagnosed in May that the cancer returned where the duodenum used to be (he had a Whipple) . Had PET Scan in June for cyberknife. Insurance said no cyberknife until he had radiation first. Finished radiation Labor Day weekend. Call today from radiologist office that new PET Scan scheduled  for October 27th. I know it takes 2 weeks for results and then with CK set up it will be maybe early December before he gets CK. NOW...you tell me. Is not this cancer growing all this time?????  Is this fair to make someone wait 8 months to get rid of cancer mass????  Am I totally wrong and need a chill pill? I just sent a note off to the radiologist that he needs to calm our stress! Any ideas?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Teddy Update

Why wait so long?  I would make noise and demand a PET scan next week!  You can't let them shove you and Teddy around like that.  That is totally ridiculous to make you wait so long.

Re: Teddy Update

According to the Radiologist he wanted 8 weeks between the  Radiation and the Cyberknife!  I just don't understand and when I don't understand I kind of go ballistic. Especially when it concerns my husbands life! This radiologist is the only one here doing cyberknife.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Teddy Update

Hi Lainy, Yes I would be frustrated!, But looking at it from a third party, I konw that cyberknife machines are fairly scarce  U.S wide and are like double booked at a lot of places.  I know here in Kansas they even have a priority list of who goes first and what for.  I overherad my onco talking with the cyberknife radiologist about me a while back and it basically boiled down to they had a waiting list and was only focusing on patients with brain tumors first, as the tumors were small and and more effective to treat.  I was told point blank that a particular hospital was focusing strickly on brain tumors at the time and any tumors over 2cm they recommended other types of radiation.  But I thought you had yours all coordinated to happen after IMRT?  Maybe you need to be talking with the hospital's patient advocacy office.As it is not making sense tio mein one way , then again it is in some ways.  Did doctors drop the ball in communicating how things were suppose to happen or what.  Wish you and Teddy this best lainy.  I can't even get started with my radiation because the machine broke down and the other machine in in the middle of being replaced with a new one. Oh! life' srials wind me up sometimes.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Teddy Update

Teddy's mass was 7cm when we started. This is the BEST and only doctor here who does this. IF in fact there is a wait list then we should be told that so that we can try to get in somewhere else perhaps another state. On one hand I am livid and on the other don't want to tip the boat over. The week Teddy was supposed to start IMRT the machine also broke here.  I guess the good part is  that Teddy doesn't feel this is an emergency like I do. I am trying to calm down before he gets home fro the barber.   I will let you know what happens when I get an answer from the doc. The other part is to try and explain this to our families who are all anxious as well.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Teddy Update

Lainy
How absolutely frustrating!  It does make sense to wait about 2 months between the IMRT and the Cyberknife.  The effects of the radiation continue after completing the course and gives the surrounding tissues time to heal and the tumor time for maximum shrinkage.  Then the Cyberknife can be given to the smallest area possible minimizing treatment to the surrounding areas.  That being said, 3 months seems like a long time.  And one would think maximum shrinkage would take place within the first month, so waiting 2 months to do the PET/CT after the IMRT, wouldn't seem to give any increased benefit.  Then getting the results and then the extended time to do the Cyberknife planning would probably put it early December.  I would really push for moving the PET/CT up to the first of the month.  Maybe ask what the benefit would be  in waiting essentially 2 months rather than one, from the IMRT completion.  Maybe it's a matter of the Cyberknife being over booked as Jeff suggested.  There is a center here in Seattle!  Just my thoughts...so frustrating to have to use your energy to push for this when you're going through everything that you are.

Know my thoughts are with you and Teddy.

Jean

Re: Teddy Update

Thank you. I will keep Seattle in mind. Waiting to hear back from the doc. I just need it explained like you just did. It makes sense to wait for it to heal so that must mean it is still working. I think what threw me was when I asked the girl who called, was this INRT holding the mass at bay and she said, "we hope so". To me Hope is a girls name right now!!! Thanks Jean.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Teddy Update

OK.. The doctor e mailed me back to calm down everything is just fine and right on course. The IMRT will take about 2-3 months to stop working effectively and
that is why the cyberknife will be later. Thats all I needed to know. Now the big question is what to have for dinner!!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

9 (edited by JeffG Fri, 19 Sep 2008 16:01:40)

Re: Teddy Update

Lainy,  Beans on wheat toast smothered in ketcup. Ha! Yummy my favorite! high fiber ,high protien, and plenty of lycopene.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Teddy Update

Lainy,
I swear these doctors could REALLY use a course on what patients think and how things can be interpretted. I bet we would all get so much better explanations and information. It is so funny that because of the nature of this cancer and how we share information, that sometimes we are more informed than our doctors and perhaps they take that knowledge for granted and stop giving all the information they should.

I am glad you got the information you needed and Teddy is marching along in the correct direction.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Teddy Update

Lainy,

Jim's PET was rescheduled to 2 weeks later. After pushing it we got it done the next week. Don't know why the results would take 2 weeks, as we had his the same day. Unfortunately, in our case the news was not good. He passed away 1 week later.  I would push to get it done sooner & also to get results as quickly as possibly. We all know that with this type of cancer every day ( sometimes minute) counts. It seems as if you & Teddy have had some good results, so I will pray that this will be the case for you now. You are both in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Teddy Update

Thanks Darla, evidently the IMRT is "frying" the mass and then the cyberknife will hopefully burn it all out but the IMRT works for 2-3 months  and that is why the wait for the cyberknife. Now that I know that I can relax a little. October 10th T goes to the oncologist with new LAB work so that may show something as well. Oh well, another drive in the car listening to Mama Mia!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.