I thought I understood it to be that too. But he did say it didn't cross the midline but there is a possibility of a small node on the other side. He also explained he couldn't tell if it was malignant but the MO is to treat that way because if it walks like a duck...etc...


It has been amazing reading the different tx possibilities on here after being told there is only one treatment possibility for my husband.
No surgery(because of location), 7 weeks of chemo and radiation.

Tues we will see if Sloan agrees.
Still trying to figure out if we should go for one more opinion after Sloan. (hard to count this guy as a real first opinion). We are leaning towards waiting till Tues and seeing what Sloan says. We have two other places we can get in with quickly if needed although I guess I'm hoping it's not necessary...

My situation is totally different than your husband. I found out 1/6 that I have a recurrence on my tongue (right side, same area as original tumor). The PET scan which was done 2 weeks after surgery (too soon) showed some hot spots in some nodes on left side (small). Doctor felt they were reactive and did a FNA (fine need aspiration / biopsy) of one of the nodes and no cancer (but a FNA is just a sample of the cells). However, I�ve had multiple doctor opinions so far and most still want to do a neck dissection on the left side or both sides. I�ve already had the max radiation dose to the right side, but radiation to the left side is still a possibility. Went for a 3rd opinion this week, and this doctor wants to do a repeat PET scan (in a few weeks), before going down the surgery path. The surgery also involves removing up to half my tongue and possible reconstruction (free flap).

They could do a FNA on the node that light up on the PET, but my guess is they will likely want to radiate both sides of the neck to ensure that the kill any cancer cells there. I didn�t read the entire thread � are they talking doing a neck dissection also?

This is a very stressful time you are going through. Once you found the right doctor and start treatment, I felt my stress level decrease. Although the treatment is not easy, but doable. I wish you the best.

Susan, your responses have been very helpful to me. The original ENT was awful(understatement) so we are really waiting to hear from Sloan to get an idea of what the tx options are.

The ENT has not even bothered to call us with the PET results(they came back Tues). My husband just happened to be in our GPs office for for something else and he called in to get the results of the PET.

This board has been an incredible resource in the meantime since our MD info is so limited. It is tough getting a hard dx and not being given guidance on what to do. We happen to be resourceful people but I shudder thinking about folks that deal with MDs like we have that are not educated in general to the medical world. Makes me appreciate the advocacy work that goes on here..

So the "treatment plan" we were given is very general so far. He was very definitive in his telling of it and he may be right but I want to hear it from someone who inspires more confidence.

Susan I had a pet that showed a hot spot too and almost stopped my tongue suregery and neck dissection. It was a false positive. They thought maybe lung cancer along with OC. I have had a few pets since but have not much faith in them.

Jim, first let me say that I just read another post about your history and if I was wearing a hat I would tip it in respect to you. Your attitude is amazing!!!

I did read that PETs can have false positives but I thought that was primarily after radiation.
He does have small nodes on each side that you can feel(more on the same side than the opposite).
I guess that the only way to know if a node is positive is to biopsy it or do the dissection,right?
I guess that's the main way it would affect a tx plan is whether they need to do the dissection.
I was just confused by this it didn't cross the midline but it's on the other side stuff...

I also just decided I'm going with the there are no stupid question theory:

In people's signatures when they mention nodes is that how many nodes were discovered to be "hot spots" or is that nodes that were identified positive for CA???

About treatment recommendations: FYI, every year the National Comprehensive Cancer Network -- an alliance of the country's leading cancer centers -- publishes Clinical Practice Guidelines in Oncology. These are the "best practices" treatment recommendations based on input from the 21 cancer centers that are part of NCCN (Sloan is one).

The 2009 guidelines for head and neck cancers are available here, on the main part of the OCF site.

Susan,

I�m not sure if anyone else mentioned to you, but I�ve found it helpful to bring a recorder to each doctor appointment. My old tape one broke and I just bought a digital voice recorder � a much better option since I can now save the file to my PC. I�ve also noticed that if a doctor refuses to let you record your conversation, this is a red flag to stay away from that doctor.

Also, ask for copies of all tests � biopsy reports, PET scans, blood work, etc. You will need these if you go for a 2nd or 3rd opinion. I also kept a binder with copies of these reports that I would take to the doctor appointments. And I recently scanned all these reports and saved them as a PDF file on my PC.

Also, you will need a CD with the PET scan, so ask for it when you go. Most places can give it to you that day or send it to you. And when going for a 2nd opinion, that hospital normally wants the original biopsy slides sent to them.