can anyone comment or direct me or give an opnion on the value of neck disection and survibability in general. I have a RAD, and chemo Oncologist, ENT, dietician and dentist all in the same facility but it is not a major cancer center and they don't talk to each other. I asked my RAD Doc if he thought I will need a neck disection and he said it would be the ENT's decision. Should not at the very least the chemo, rad, and ENT have a cup of coffee over the decision? Thats why I'm looking for any definitive studies,and opinions on the effectiveness or non effectiveness of the procedure.

Rick,

What you are referring to is called "multi-disciplinary care", and you are lacking a "multi-disciplinary team". Communication is key, and you have the right to ask them about a cohesive team-oriented treatment plan... or why they do not have one.

In such a case, I really empathize with you, because you have to do footwork that it would be ideal for others to do for you. It was the same for my FIL in India, where I lived for four months.


My FIL had a neck dissection. Aside from the fact that doing so removes some cancerous tissue, the primary benefit of doing so was that the doctors then sent several samples from the tissue to a pathologist who looked to determine how prevalent the cancer is, and this is what determined the best course of treatment. This is based on statistical data of likely outcomes, where a careful balance between survival and quality of life are considered. The benefits of sampling as much of this tissue as possible far outweighs the risks in my FIL's case. In your case, I don't understand why you are considering a dissection when it appears you have undergone treatment; are you having a recurrence? This discussion should be had with your docs; demand to know. I'm sure there is a very good reason, I am no expert.


The side effects were that he took some time to heal from the surgery, had some stiffness in the area, and had a little fluid buildup in the area. TIme and exercise have vastly improved him in one year. The long term effect is mainly that he has a slighly visible difference in appearance and slight stiffness; nothing debilitating. I think the idea of it is what bothered me until we saw that it was not as if a vital organ was being removed or anything.

Do you have somebody helping you with the details? It can get complicated and I had to trust my FIL's doctors sometimes because they could only answer so many questions before they had more patients to see. But India is very different.


I can get more details for you, but it has been over a year now. Let me know.

Rick,

Following TX, it is common for you to see an ENT monthly. So your ENT will be the doctor who would likely notice if there is a problem and recommend a course of action to you and the tumor board.

Most Community Cancer Centers are CoC accredited so they usually will have tumor boards and follow a multi-disciplinary team approach. Their major draw back is they MAY not see enough OC case to have a dedicated head an neck team with the level of desired expertise and equipment.

I am almost through Radiation and one more round of chemo and my ENT is recommending a neck dissection post-treatment. He told me that statitsically, there is a 10% better chance of avoiding re-occurance with the surgery so given my ability to generally tolerate surgery, I've agreed.

Rick,

From your signature it appears that you are in the last few weeks of treatment right now. Your primary is obviously fairly small, comparable to mine, which was almost exactly 2cm, so right on the T1/T2 line. Where is the primary -- i.e. right side, left side, midline? You appear to have 2 nodes involved on the right, which would lead me to believe that primary is on the right or midline.

You can look at all kinds of studies, and go crazy doing it. All I can share is my experience and what I was told. At the time of diagnosis, I had one palpable node on the right, my primary was on the right, but just touched the midline. My team (ENT/Surgeon, Radiation Oncologist, Medical Oncologist) suggested that I have the neck dissection first, then proceed to treatment. Because my tumor touched the midline, they also suggested a bilateral neck dissection, just to be sure.

Their primary rationale was based upon the fact that the primary pathway for BOT cancer is the lymphatic system. By doing the dissection first, they can immediately cut off that metastatic route (to the extent possible -- they never remove all of the lymph nodes). The pathology then tells them what they are dealing with -- extracapsular spread, etc. That can then be accounted for in the IMRT plan and the chemo. They have achieved very good results with this approach.

Many institutions follow your path -- treatment first, then the neck dissection, if necessary. This path uses the theory that the radiation may kill all of the tumors, obviating the need for a neck dissection. Good results have been obtained using this approach as well.

If you are looking for "conclusive" studies, tough to do. Most studies that I have seen generally show better results for advanced disease where a neck dissection was done. However, there are so many variables -- number, size and location of nodes, length of time between diagnosis and treatment, etc. etc. It is difficult to quantify results in an individual case.

I can tell you that the surgery itself is not bad. A few days in the hospital with some drains hanging out of your neck, and some funny looks after you get out, as your neck looks a bit Frankenstein-ish. I was back at work in no time. Long term you can have shoulder/neck stiffness and pain, depending upon the type of ND, but that is more luck of the draw than anything.

Everyone is different. I wanted to throw everything I could at this disease, so doing the ND was a no-brainer, especially since they felt they could eradicate the primary with radiation/chemo. Other folks want to hold something back -- radiation, ND, whatever. Individual choice.

I just had my latest follow up with my RO, and got another clean slate, so their program has worked for me for just about 2.5 years since diagnosis. Do get your doctors to talk to each other. That is really, really important.

Best of luck!

Rick,

Tough decision and I too am not aware of any studies that may help but it has been suggested, maybe even proven, that HPV negative SCC is a tougher opponent than HPV+ SCC. Just throwing that into the decision matrix.

Also remember that an ENT is a surgeon by training and may be more apt to call for a ND.

I had one 2.5 years ago. I am much much bettter but the first two years my neck was very stiff and knotted form the effects of the surgery and radiation. This can all be worked through with physical therapy and excecise and stretching. My neck is almost back to wher eit was. I'll neve rbe the same but at least I know that I atacked this disease with everything available out there.

I know it seems scary but you want to give yourself the best chance of survival and least chance of a reoccurance. tHis can can come back with a vengence.

Best of luck to you and wishing you a speedy recovery.

Rick

Let me put your mind at ease on one thing: I was treated at a CCC with a multi-disciplinary team yet both the RO & MO deferred to the ENT on whether I should have a neck dissection after my radiation and chemo. I had done a survey of the literature plus reported lectures on Neck dissections and as far as I can tell they are heavily favored by some doctors and equally disfavored by other surgeons. Why, because over 50% of the neck dissections result in the lymph nodes taken out testing negative for cancer. My ENT advised against any neck dissection. So did some friends who were doctors at Anderson Clinic. Now when my cancer came back, it was a different story. First, the tumor came back in the same place, so it was not a case of leaving the lymph nodes in causing the recurrence. Second, one lymph node that did have cancer showed up as necrotic on the scans. So just to be on the safe side, I agreed to a neck dissection. sure enough not one of the lymph nodes taken out showed any trace of cancer. Neck dissections not only leave scars, they leave your neck and shoulders incredibly weakened for life. I was lucky that none of the three major nerves were severed or nicked as often happens in neck dissections. Nor were any major muscles cut but I had three months of intensive physical therapy before I could turn my neck to the side. Even now I have to do "Shaker" neck exercises every day and the skin feels like petrified wood. I was fully prepared to refuse my first neck dissection no matter what the ENT thought and was very glad that she concurred with me. The odds were quite different though after the recurrence and while it was gratifying to know that the cancer had not spread to my lymph nodes, I no longer have a very important part of my body's defenses against disease: a whole lympathic system. So in my mind, there are more cons than pros for you.
However, I am not a doctor so I hope your ENT is as cautious as mine was about unnecessary surgery.
Charm

Rick,

Are you the one bringing up the ND question or is it your RO?

It doesn't appear that you have finished Tx yet or maybe you just have so what is prompting this discussion?

Are you looking for some insurance after the chemo/rad?

I don't think I would be throwing a ND into the Tx mix at this time UNLESS there was some diagnostic reason or your doctors believe it's necessary.

This was written after my response to your PM and after further thought.

I'm trying to be my best advocate since I'm currently not being treated at a major CCC. I think its in my best interest to do that footwork. Yes I most certainly am willing to acceapt the quality of life issues associated with the disection if there is any hint of proof that it improves survivability.

I will be done with the treatment in two weeks. Then the waiting for the next pet scan. So I have some time to research options. I assume the ND would not be done prior to the next scan?

Would it be at all unreasonable to seek a second opinion at CCC prior to any further treatment at this facility?