Greetings all...I have already really appreciated the amount of support I have received from this group. My father IL saw the RO today...very well known woman, Sharon Spencer, who is with Univ. of AL in Birmingham...the cancer center there is a comprehensive cancer center, I'm very satisfied. As I have told you, my FIL has been diagnosed with stage IV base of tongue cancer, mets to cervical lymph nodes. I am a social worker, just about all my experience has been hospice/end of life for the last almost 20 years. I wish I had more knowledge about all this diagnosis phase...it's very frustrating. The RO was unable to make a plan of care because we have not yet seen the medical oncologist, who will determine whether he can tolerate chemo. Depending on that eval, the RO makes her plan. She said that without chemo, she would probably want to do twice a day radiation...has anybody had experience with this?
With his teeth...I have shared that it has been recommended that all his teeth be removed by the VA team due to his age and stroke/BP/other meds he has been taking for more than ten years. That was scheduled for next week, now has been postponed, and I'm trying to coordinate the teeth extraction with a PEG placement so he only has to go under anesthesia once.
Bill is so frustrated with all these delays,and I sure don't blame him. He says he can just feel the cancer growing in him. He has an appt with the MO next Thursday,and I can't be there as I'm teaching in a conference in Miami. I'm looking for any suggestions from this group as to what we need to be asking this doc.
Thanks for all your wonderful advice..Wendy

Hi Wendy,
we try to avoid mentioning specific doctors names here. If your Bill is being treated at a CCC they should be convening a tumor board to coordinate his treatment plan. The teeth extraction and PEG placement are 2 different surgical teams - you may not be able to acheive that at the same time. I have only been able to do that kind of multiple stuff at my Vet.

Are his teeth in really bad shape? - I wouldn't let them remove mine.

There are quite a few tests and other things that need to be performed prior to final Dx and Tx they are (they may be others dependant on his other medical conditions):

PET or PET/CT
MRI
CT
Chest x-ray
Creatinine clearance (kideny function for tolerance to chemo)
complete blood chemistry workup
biopsy
nasolaryngoscope
Dental evaluation
Audiology test
Thyroid TSH baseline test
radiation mask fitting w/C arm x-rays
simulation in the rad machin
PEG placement
there may be others like port installations, etc.

It took almost 2 months before my treatment started and I was on the fast track.

Being a social worker, you are probably aware that Stage IV, BOT, is a very serious cancer. It will require a very agressive treatment plan. Estate planning and advanced directives should be done immediatly.

Twice daily radiation is a fairly new RO concept and the results have been pretty decent. It is a little less convenient for the patient and the total fractional dose is the same either with daily or twice daily treatments.

My guess is that they will recommend Cisplatin if he can tolerate it (i.e. -good kidney function) as an adjunct to the radiation.

Attached is a link that will give you all the the information on the Standard of Care for diagnosis and treatment of H&N cancer. Check section "ORPH-1"
http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf

My advice for the meeting with the MO is to send a good note taker or get the docs permission to tape it.

Wendy;
The last two weeks of my radiation therapy was a twice daily regime. 9am and 3pm daily...I also had 8 rounds of chemo.
Darrell

Hi Wendy -
I know the delays can be very frustrating. You get this diagnosis and then everything seems to just stop. The urgency for treatment given by the doctors making the diagnosis does not match the availability on their schedules. When my husband was diagnosised with Stage VI, BOT SCC it took almost six weeks to get 'things rolling'. While he is waiting, suggest that Bill work on building up his stamina - he is going to need it. Walking everyday, etc. It will give him (and you) a tangible 'thing' to do.

I totally agree with Gary about having someone go in with Bill to take notes and also to ask more detailed questions. That bit of advice from the survivor stories was priceless to us during Kenny's treatments. I am his 'pay attention' person with all appointments. During treatments Bill will probably see the doctor for consultation every week - that is the time to talk about everything - nutrition, mental health, family situations, I mean everything. Your doctors can't help you if they don't know what is going on at home.

Keep us posted on Bill's progress - and don't forget that you aren't alone.


Carol -