My 61 yr old husband,Dennis,was diagnosed 10 days ago with T1 N1 tonsil cancer. Dr Clarance Sasaki and tumor board at Yale came up with protocol of neck dissection surgery to remove about 30 nodes, at which time bracytherapy seeds would be put in tonsil tumor. After recovery from surgery, he would have followup daily radiation and cisplatin once a week...The problem is we got a second opinion and this dr., an oncologist said this treatment is out dated and he thinks Dennis should have the chemoradiation with no surgery, unless it is needed after the course of chemoradiation. Pet scan set for Monday. Can anyone give us advise as how to decide which protocol we should follow??? We desperately want to make the right choice.

Oh, my dear Wendy....so many tough decisions we must deal with...Sometimes I just want to say "Stop the world, let me catch up, then let's go again..."

There are many here who have had to make similiar decisions. In the end, it just comes down to "whom do you trust". Hopefully, some of the 'old-timers' will weigh in with their suggestions and opinions.

In the meantime, read all that you can and pray for the wisdom to make the right choice for Dennis. You'll probably also get some feedback regarding PET scans.

God bless you, and welcome to OCF! It's a great starting place!

Lois & Buzz in NC

Thanks, Em. I know each person's experience is unique to them, but I am hoping someone who has had this particular protocol will tell us about their experience. Now that we've had 2 local opinions and since they clash, our next plan is to get down to John's Hopkins this week. (In between tooth pulling and implant surgery.) I am bracing myself for what is ahead for the best guy in the world. Thanks for your prayers and for understanding.
Wendy

Having done both surgery and chemo/radiation (well, one chemo treatment anyway, 6 weeks of radiation) I can tell you the radiation made the surgery seem like a walk in the park.

Hi Wendy,

I had stage III/IV tonsil cancer. I had a radical neck dissection with 41 lymph nodes removed, 1 being positive. Then followed 38 radiation sessions, no chemo. The radiotherapy finished in March 2004, and I'm still going fine. There are so many differing opinions about treatment, and I'd get as many as possible.

I was in shock and only saw the one doctor, but he is head of the Head and Neck clinic at a major hospital here in Sydney. Before I went through treatment I was examined by over 10 doctors (surgeons and radiologists) at the hospital who then conferred for half an hour before giving me
the decision. I tended to trust the decision. Because I had never had surgery before I was apprehensive, but when I asked what if no surgery I was told that only having radiotherapy, it may not work, and then I would have to have the surgery. I decided on the surgery followed by radio. So far so good.

Everyone is different, every doctor thinks differently, so ask lots of questions.

Good luck!

Tizz

Thanks, Tizz.
We have surgery scheduled fot Sept. 11 so we have some time to decide. The Drs here at Yale (and the tumor board) didn't spend much time with Dennis before they told us the protocol. The brachy seed thing is adding to the confusion. No one else seems to do it for this. If i didn't already hear conflictling opinions, I'd feel alot better.
Its great to hear you are doing well after your treatments. We send our love and support to You in OZ.
Wendy

Hi Wendy

I had stage IV tonsil cancer and never had to have surgery. They gave me 2 rounds of chemo to shrink tumor then 3 more rounds concurrent with 38 radiation treatments. I have been cancer free since March 2006.

You need to ask lots of questions and decide on the treatment you feel most comfortable or confident in.

Best of Luck
Steve

Thanks, Steve,
Since i posted, I have come to realize that the node removal surgery at Yale with brachytherapy seeds (followed by 30 radiation treatment and once a week chemo) is way outdated. A local oncologist friend we met with for a second opinion would do just what your protocol was, to the letter. We are trying this week to get a third opinion, possibly at Johns Hopkins.
You have been a big help. Dennis and i are inspired by you. Stay Well.
Wendy