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?

I'm sorry for the double post but I was being limited to the amount I could type in this box? I'm the one bringing up the neck disection. My Ent first suggested it prior to TX then changed his mind saying he was biased to waiting post tx.

Do the lymph nodes get destroyed by the radiation permanaetly or do they begin funtioning at some later point? I see a lot of necrosis comming back in people's pet scans, does the body remove the dead cancer cells on its own?

Because of the recurrance rate and the fact that I have already used chemo and radiation I seem to be in the camp of give all you got?

I was not really given a choice with my age! They wanted to use every possible measure to attack this the first time. I had the glossectomy then followed that with a ND which in my case showed a very slight extra capsular spread in 1 node which NO scan could ever show! So then it was off to the radiation. I just personally feel much better knowing that the tumor or the possiblity of the tumor is totally out of my body and now there is less of a chance of it showing back up in that area down the road. The scar sucks, the tightness sucks and numb feeling sucks but hey you have to do what you have to do to beat this! In my opinion the ND was the easiest of all the procedures I have had so far! They clipped a nerve so I have some other issues that some people dont have but its manageable! I hate that word...I sound like my damn doctors now! That is there favorite saying when you ask them about the side effects..."Its manageable" Its kind of like "hunker down" after the 3 hurricanes that kicked our ass in southeast florida that was everyones favorite saying.....time to hunker down! Now everytime I hear someone say that I want to hit them! lol

Jim,

How are you these days? Saw your name and was just wondering, how is your weight and eating going?

WFC

Rick,

IMHO you really need to concentrate on the next few weeks of Tx and walking out of that tunnel and then talk to your docs (and get another opinion at a CCC if you want to) but don't waste any more time on a ND now.

Hey Jim, hope you are doing better.....let us know....been there and done that, from another Italian! SMILE!

WFC,
Feeling pretty good. I am able to eat pasta and softer foods that do not burn. My weight has been pretty much steady however I did lose a couple more lbs the past 2 weeks since I have stopped drinking the VHC so I think I am going to start drinking them again throughout the day. My RO called me yesterday to ask how I was doing and I told him that I was still coughing up some yellow/greenish mucous like I had a cold so he told me to come in and he prescribed me Biaxin to take for 2 weeks incase I have an infection. My throat is still very raw, sore and swollen. I went to the football game, walked about 4 miles that day and didnt get to bed till about 11pm so my energy level is ok thats for sure. I am still taking percocet every 4 hours because if I do not I cannot swallow, eat or barely talk not to mention I become extremely irritable so says my wife...lol! The node on my right side that was swollen is still there, it has not gotten any larger and still what my ENT calls a "sub-centimeter node"! They want to see if it goes away with the antibiotic and if not want to run a CT scan to take a look at it. They still seem to not be worried about it thinking it might be swollen from the radiation or hardened because of the radiation but of course do not want to take any chances. So hopefully that all goes well. We see but all in all I believe I am doing fairly well, I am looking at trying to get back to work Oct. 1st that is of course if my old employer hires me back! If not I will be hiring an attorney and suing them for discrimination! If it is not 1 thing its another! Thanks for asking WFC!

Oh Davidcpa how about them BUCS!!!!!!!!!! LOL, I do not need to talk about the Eagles 38-10 blowout of the panthers and there 5 INT's, 5 sacks, 2 fumbles and a 85 yard punt return for TD by Desean Jackson because I am sure you already heard about it....lol

Jim,

Sounda like you are doing OK. That's great. I continue to lose weight, down 65lbs, and now the Drs think my thyroid got fried during radiation. I need to go for a Thyroid scan and cat scan next week.
One thing after another, but I am back to work for the last seven weeks and feeling somewhat tired, dry mouth
BUT
I am alive and doing ok!
Good luck to you and your Eagles in the future!

WFC

get a second opinion at a CCC,

Jim,

Yes I did hear about McNabb's broken ribs and Michael Vick's offer to "put him down" for free and that Vick's jersey has been the #1 Eagles seller. Humm

David,
LOL whats funny about the Vick Jersey is that most of the sales came from Atlanta Fans converting to Eagles fans....Can you believe that? I was at the game on sunday and saw thousands upon thousands of eagles jerseys! We basically turned Charlotte into a mini Philly! I saw MAYBE 2 Vick jerseys the entire time and I was looking for them! A lot of the sports stores in Philly refuse to even sell them, infact there is a store that sells nothing but philly stuff for animals that has lost 50% of its business since they signed Vick! Crazy! Hey Stallworth kills a human being and gets 30 days in jail and nobody says anything about him. Vick gets 2 years in federal prison and everyone hates him...I believe in 2nd chances and so far he has done A LOT in the community and they are slowly coming around. That whole Stallworth ordeal makes me sick! We value a dogs life more than an humans life with a young family??? Doesnt make sense to me.

On a different note....I have heard a lot of you talk about your thyroid getting fried during the radiation. 1st how do you get that checked? Blood work? Also, if it did how do they fix it if anything or do they remove it totally and you have to take meds the rest of your life?

The thyroid test in a simple blood test. Make certain they run a full thyroid panel including the TSH level. They should have done this before you started radiation so you know what your base TSH is. If they didn't, get the test now so you have a base for it because at this point it sounds like your thyroid is working fine.

If it does go south in the future, it is treated with a small pill taken once a day. It can take a bit of jungling to get the correct dosage which is why it is important to know what your TSH was before treatment. No surgery is required.

Take care,
Eileen

What Eileen is true except for Stubborn Ass Italian Eagle fans. Those are just taken out back, given a used Atlanta Vick shirt and released but into the woods !!

On a more sane note...without or even with a TSH baseline it's hard to Dx a thyroid problem on blood work alone unless symptoms are present so just be on the lookout for the symptoms of Hypothyroidism like feeling tired, feeling cold when you shouldn't, just to mention the 2 that stood out for me.

David,
My TSH was at 32 and I had absolutely NO sypmtoms. When it got to around 15 on the meds, my only symptom was eating evrything in site. Took more than 3 months to get it back to my normal.

Since it is a routine test and requires no extra blood, if you are asymptomatic, I would have it checked at least once a year when you have other blood work done.

Take care,
Eileen

Hello all,

I'm 55 years old with T1/N3/M0 (Stage 4) SCC of the Left Tonsil (HPV-16 positive). Originally detected 3/20/09 with a 6 cm mass of enlarged lymph nodes. Treated with 9 weeks of induction chemo (TPF) followed by 7 weeks of chemoradiation (using IMRT) which concluded 8/26/09. Now we're considering neck dissection.

I want to note that there are several types of neck dissection. The "gold standard" is a radical neck dissection (RND) which removes the sternocleidomastoid (SCM) muscle, the internal jugular vein (IJV), and the spinal accessory nerve (SAN) along with the lymph nodes. Then there are various forms of modified radical neck dissection (MRND) which remove fewer structures - although they all remove at least a few lymph nodes. <http://en.wikipedia.org/wiki/Neck_dissection>

I recently had a CT scan showing a 2 cm mass still remains. I'm told this mass will contain live cancer cells in about 25% of cases like mine. We're soon going to do a PET/CT and, if this comes back negative, we'll probably NOT do a neck dissection. Its not clear what we'll do if it comes back positive but I think its likely we'll defer the decision and do another PET/CT in late December. Here are some articles I found on this topic:

http://www.ncbi.nlm.nih.gov/pubmed/19358193

http://www.oncolink.org/conferences/article.cfm?c=3&s=47&ss=267&id=1686
http://www.oncolink.org/conferences/article.cfm?c=3&s=47&ss=264&id=1672

http://www.ncbi.nlm.nih.gov/pubmed/17921898?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=2&log$=relatedarticles&logdbfrom=pubmed

I hope to avoid this surgery altogether. If surgery seems advisable, I hope to preserve the SAN, IJV, and SCM muscle. In my view, these structures are unlikely to harbor live cancer cells and only need to be taken if there is a strong likelihood that the immediately adjacent tissues harbor live cancer cells. Preserving these structures should help reduce long-term side-effects that reduce quality of life. Its my understanding that most modern neck dissections at least try to preserve the SAN.

I hope the above information is helpful to some of you.

Rob

Rob, you are wise to do your homework. You will be better prepared to make a decision after you get the results of the PET/CT. 1. I, myself, so far have been very, very fortunate. I did have a modified ND, and I was very thankful for it! It gave me a great sense of confidence that the cancer had been removed by my original surgery and hadn't spread, and that, then, most of the metastatic pathway had been removed. 2. All cases are different. 3. With all of the treatment and diagnostic testing you have had, and with your living in Boston, you obviously are surrounded by knowledgeable professionals. LISTEN TO THEM. 4......and I am betting that you hear this more than once: Don't play much of a waiting game with SCC. If it were MY neck, I would run, not walk, to the operating room. But that's just me. Listen to your doctors, and while the final decision is yours to make, remember that you are not as prepared to make it as they are. XOXO

Rob,
A PET/CT too soon will more likely show false positives.
It has just been a couple months and that is quite soon.

Yes be careful on a false positive read but with your facts it will be hard to dismiss it as well. Tough decision.

6 cm was huge. Didn't you notice that before?

First of all, never use Wikipedia as a source of information on stuff like this. Unless you are a physician, and can separate the wheat from the chaff yourself, rely upon your team. There is a fine line between being well informed (good) and substituting your judgment, based upon internet information(bad).

If you are treating at a CCC, adopting current practices, they will undoubtedly do an ND that preserves the maximum amount of functional tissue possible. Oftentimes, however, they do not know that until they get in there and see what is happening. Generally, the SCM, SAN and IJV are preserved unless they are structurally involved with tumor cells, or active disease is in close proximity and there is evidence of extracapsular spread.

In my case, I had a bilateral ND, due to the fact that my BOT tumor touched the midline. They removed nodes and connective tissue from Levels I through V, and both submandibular salivary glands, but kept the SCM, IJV and SAN intact.

Truly, the ND was the easiest part of treatment. Anytime they go into Level V, there is likely to be damage to the SAN and related nerves, which can cause shoulder/neck muscle issues, which I have, but is very manageable.

It seems that attitude toward ND is dependent upon whether you adopt the "go for broke" approach, throwing everything you can at the disease, or the "incremental" approach, doing the least invasive treatment providing the opportunity for cure.

That's a very personal decision, but one that needs to be made with the full informed opinions of your CCC treatment team. As others have said, I would not rely solely on a PET at this point, due to the high false positives, but your team will likely tell you that themselves.

Good luck.

I'm being treated at MGH. I think I have a very experienced and expert medical team. While I'm not a medical professional, I am a PhD scientist with a background rooted in applied mathematics (which I use daily for a broad variety of government-sponsored engineering research projects)... so I think I am better than most patients when it comes to understanding the medical literature and separating "wheat from chaff" while reading various sources of information on the Internet.

My original (6 cm) nodal mass came up very quickly in March. The source (left tonsil) was identified in early April as the result of biopsies taken during a pan-endoscopy (which included a bilateral tonsillectomy). A subsequent full-body PET/CT, done prior to induction chemo (IC), showed no activity anywhere except the lymph node mass... not even in the remainder of my left tonsil. I responded very well to IC, which shrank this 6 cm mass substantially... but it was starting to grow back in the few weeks hiatus before I began chemoradiation (CRT). The recent CT observes a "matted nodal mass at left level II deep to the SCM muscle which appears slightly less prominent in size than before measuring 2 cm x 1.6 cm x 3.9 cm" and "at left level IIA, posterior to the submandibular gland, an enhancing lymph node smaller than before, measuring 9 mm x 7 mm today while previously measuring 12 mm x 10 mm." [The comparison is to a CT done in late June, at the conclusion of IC but before starting CRT.]

My next PET/CT is scheduled for 11/02/09... and I understand this is quite soon following CRT (so that false positives are likely). I'm really hoping to see negative results in the region of that "matted nodal mass" as this would tend to indicate its just a bunch of necrotic tissue. But, if the PET/CT comes back positive for this mass, I might ask my doctors about doing a FNA (or a small surgical biopsy) to try and sort out whether or not its a false positive.

Rob
just make sure they keep a close eye on this node,they have a nasty nasty habit of causing more problems than the origonal primary.I personally find it quite surprising that they didn't do a neck dissection N3 is quite a large secondary,and quite a few people here have been bitten on the bum by nodes like this.

have you had an MRI scan? You wouldn't have the same problem with false positives.

good luck in whatever decision they advise next.

love Liz

Hi Liz,

Are we talking about "functional MRI" or "standard MRI"? My understanding is that standard MRI will provide anatomic information not significantly different from the CT scan I already had. Like a CT scan, I think standard MRI cannot distinguish between necrotic tissue, edematous tissue, and cancerous tissue. I think a PET/CT can distinguish between necrotic tissue on the one hand, and either edematous or cancerous tissue on the other hand. Thus, a negative PET/CT reliably indicates only necrotic tissue is present while a positive PET/CT indicates that either edematous or cancerous tissue is present.

My understanding is that a CT scan merely tells the doctors there is an abnormal lump of tissue present and does not distinguish the state of this tissue (necrotic or edematous or cancerous)... its based on how well this soft tissue blocks x-rays and I think it blocks x-rays about equally well regardless of the state.

My understanding is that the standard MRI provides similar information... but its based on the density of hydrogen atoms in the tissue (many of these hydrogen atoms belong to larger molecules) with a higher density providing a stronger MRI response. Perhaps there is some difference in hydrogen density between necrotic tissue on the one hand and either edematous or cancerous tissue on the other hand... in which case the standard MRI might provide similar information to a PET/CT... but its my impression that, in order for a standard MRI to reduce the "false positives" problem of a PET/CT, there would have to be a detectable difference in hydrogen density between edematous tissue and cancerous tissue. While I suppose such a difference in hydrogen density might exist, I don't know enough to know for sure that it does... my "wild guess" is that any such differences are small and would be an unreliable means to distinguish these two kinds of soft tissue.

But I'd also make a "wild guess" that its theoretically possible to design a specialized "functional MRI" scan (which focuses on something other than simple hydrogen density) to reliably distinguish these two kinds of soft tissue - whether anyone has tried to design such a specialized MRI scan (and whether its gone beyond a research exploration to reach clinical practice) I do not know.

Does anyone know what an MRI can do that a CT scan or a PET/CT cannot do?

Rob

My PET/CT report is done and, while I've not seen it yet, I'm told that it shows positive for a "persistent" node within that large (2 cm x 3.9 cm) mass.

At my request, my ENT surgeon has agreed to perform a needle biopsy, but he recommends surgery regardless of the biopsy result (since a negative biopsy could well be a false negative). I think he would have recommended surgery even before the PET/CT, based only on the previous CT.

One worry is that he's not sure he can spare the IJV or the SCM muscle (and still perform an oncologically sound procedure). Further, he indicated there is risk of damaging the SAN because of the location of the persistent node.

I'm still undecided, but open-minded. I have a meeting with my whole medical team scheduled for this Friday. I'll be interested in what they say... as well as seeing the report from the PET/CT and from the needle biopsy.

Are there alternative treatments to surgery? Would some additional radiation treatments (focussed on the lymph nodes, instead of the tonsils) make sense?

I also wonder about the potential for residual disease that might not be addressed by surgery.

Anyone have any thoughts about all this? What are the long-term downside effects of losing the IJV and/or the SCM muscle? What about the SAN? Where can I learn more about what to expect?

Rob,

You can always get another opinion but time is of the essence.

Rob had his internal jugular vein removed and he had no problems at all with that,his muscles were reasonably undamaged.Surgery sounds like the very best course for you,i personally wouldn't waste any more time prevaricating ,these monsters grow quick.

Rob

My personal experience is that PET/CT scans are worthless except for plotting your radiation field. I am clearly biased but with your obvious research skills, you probably have already found the studies and reports on PET/CT scans problems, especially for base of tongue cancer. As for lymph nodes, my MRI reports did identify "necrotic" tissue and the subsequent neck dissection confirmed that impression.
Have you explored a different ND surgeon? My understanding is that it is like prostate surgery, some "great" doctors are quite good at consistently not having nerve and muscle injury that other "good" doctors routinely inflict. I can relate to your concerns as I simply refused a neck dissection the first time around, but caved in when the cancer came back a second time and I was having so much horrific surgery that the neck dissection was minor. Oh, and my doctor did avoid all damage to all the muscles and nerves but she does many many NDs a year. good luck
Charm

"Prevaricating"??? I think you meant something else (like Procrastinating). But no matter, I'm disappointed that it seems my chemo-radiation hasn't been definitive... I expected (and I think the doctors had expected) that it would be. I'm also a bit surprised/shocked they have so quickly suggested surgery - the possibility had been mentioned earlier, but they (the doctors) made it all seem so remote that I'd put it out of my mind. Sure it was a possibility, but it never seemed likely.

Sigh. I'll have the biopsy, talk with all the doctors, and let you know what I decide. Thanks for the replies and comments. More are welcome.

I had a ND among many other things done with my first surgey in August. The doc removed 3 non cancerous nodes. The scar is barely noticeable. I have peace f mind that the cancer didnt spread to other areas. Best of luck with your decision.

Charm,

Thanks. Yes, I am considering 3 different surgeons. I only know one of them; he's a nice guy and I feel he did a decent job on my pan-endoscopy (and bi-lateral tonsillectomy) last April... but MRND is a lot more complicated. The other two were recommended by my RO, and they both belong to the same institution as my RO. So how do I go about choosing among them?

Rob

Rob

You can start by asking how many neck dissections each surgeon has done in the last few years and if any of them had "complicated" ones like yours and how it came out. Of course, you might not get any useful responses but generalities. I often wished that hospitals would keep statistics on their doctors that they provide to patients: Dr X has done 100 NDs, Dr Y has done 10 NDs etc.
One other source may be local magazines: the Washingtonian runs a "top doctor" issue every year where it surveys doctors to ask them which ENT, Cardiologist, Gastro, etc the doctors themselves would go to. They publish a short bio on each winner. That made my choice easier as my ENT surgeon had been a winner for cancer surgery each year plus her husband had oral cancer so she empathizes with her patients' travails and is very sensitive to minimizing side effects of surgery. She backed my initial decision to refuse the ND the first time around,

Rob,
Are you being treated at a major Cancer Center?
In any case, a second opinion may be wise.

As I recall, a ND when nerve or vascular invasion is involved can be a real game changer, so I would want the surgeons to be very experienced with those complications.

I have been told when one doctor recommends another it is usually a good sign.

I had a node near the Carotid that they were concerned about, and despite scans, were not sure until they got in there.

I was given worst and best case scenarios, and I think even the best case scenario sounded worse than it has actually been. I hope that hold true for you.

Also, two ENT surgeons performed my SND.

Thanks again for your responses.

My ENT's office scheduled my biopsy for 11/23/09 with a follow-up scheduled for 12/01/09. This does not sound as if they are in any hurry. I've been thinking more like doing the biopsy, and getting the results, all by early next week. They were able to move this quickly on a biopsy they did last March (when they were initially trying to diagnose me), so I know my expectations aren't unreasonable. Their lack of any rush makes me think my ENT is just a "guy with a knife", and he's looking for a place to use it.

Thanks to my nurse, I got a copy of my recent PET/CT report. (I also have a copy of my previous PET/CT report from 4/22/09, before I had any chemo or radiation treatment.) These reports don't use terms like "positive" or "negative". The older report talks about "intense FDG uptake" in the large nodal mass on the left side of my neck while the recent report says this "intense FDG uptake" is now significantly resolved. I'll reserve final judgement awhile longer (at least until after I've heard from my medical oncologist), but this sounds very close to a "negative" result for this nodal mass and makes me more comfortable with the notion of deferring surgery. The recent PET/CT notes a few new areas of FDG uptake, but none of these make me concerned; for example, the left tongue base shows "nonspecific" uptake which "may represent physiologic muscle activity" and I know I have a sore there (from radiation treatment) which hasn't fully healed.

My ENT also responded to a few follow-up questions that I sent him last night (via email). One was whether the recent PET/CT report and images would help him be more precise/definitive about the possibility of sparing the SAN, IJV or SCM muscle; his answer was basically "no". Another was whether I should keep the PEG to help with recovery from surgery (or can I have it removed now, since I'm no longer using it); his answer was that neck dissection shouldn't interfere with swallowing unless the vagus nerve is involved or injured. Great... now I need to find out what a vagus nerve is, whether its involved, and whether its likely to be injured by this surgery.

Well, I feel better having a little more information. Especially since it makes me think there may not be a need for surgery... at least not right away.

Rob

PS) To answer some questions: I'm being treated at Mass General Hospital (MGH) in Boston. I think MGH is among the top-four treatment centers for head & neck cancer in the USA; the other three being Dana-Farber (Boston), MD Anderson (Houston), and Johns Hopkins (Baltimore). I have a colleague who got ND at Johns Hopkins many years ago and he felt his surgeon there was top-notch; there is no reason to restrict myself to Boston-area surgeons for a 4 hour operation (plus a couple days inpatient stay) so I may consider traveling for this.

Charm: Who was your ENT and which issue of the Washingtonian has that "top doctor" report?

Rob

My ENT surgeon has made the top doctors of Washingtonian at least the last three years. I did a google search but you have to either be a subscriber (as I am) or pay $5 for access. Anway here is her information from the most recent Washingtonian top doctors that I just accessed:
[quote]Top Doctors

Thousands of Washington, D.C., Maryland and Virginia physicians were asked: If someone in your family were sick, whom would you call? Here are the results.[/quote]
[quote]
Catherine A. Picken
Otolaryngology
Downtown DC
2440 M St NW Suite 620
Washington DC, DC 20037
T: (202)785-5000

Hospital Affiliations: GU, GWU

Accepted Insurance: Aetna HMO, Aetna PPO, CareFirst BC BS PPO, CareFirst BlueChoice HMO, CIGNA HMO, CIGNA PPO, Great West PPO, Kaiser Permanente HMO, Medicare, NC PPO, OneNet PPO, PHCS Multiplan PPO, United Health Care HMO, United Health Care PPO[/quote]

Your surgeons in Boston may be just as good and I would think you have similar surveys in Boston. It's the podunk towns without CCC and top notch docs that usually require travel.
I have been going to the Lombardi Cancer Center at Georgetown in addition to her private office. She did the surgery at Georgetown.

Many cities seem to have these Top Doctors lists that can be Google searched as "[City's] top doctors 2009".

In San Diego, County Medical Society members are asked to vote for those board-certified doctors to whom they would refer their patients and family. The member is allowed to vote across some 30 specialties.

I also checked the list from previous years. A couple of my doctors consistently show up, and a few never made it. It seemed that the younger doctors were rarely on the list.

Met with my MO today. The meeting did NOT go as planned; she 'forgot' that she planned for the entire team (except the RO, who is out of town) to meet w/me today. However, she did grab the surgeon and had him examine me (after they reviewed my recent test results). This surgeon was one of two recommended by my RO and is not my usual ENT... I'll call him Surgeon #2.

Interestingly, both Surgeon #2 and my MO characterized my recent PET/CT as "negative". As mentioned earlier, the PET/CT report says that the FDG uptake has "significantly resolved"; I see this as different from "completely resolved" and assume it indicates that there is still some FDG uptake... if so, then these two doctors are basically telling me there's not very much FDG uptake.

After reviewing my PET/CT with my MO, Surgeon #2 had a good look at my throat -- both through my oral cavity and with a tube down my nose. In the end, he said he's "on the fence" about whether or not I should have a ND. Later, after he left, my MO told me she thinks that I should have a ND.

Overall I felt more comfortable with Surgeon #2 than with my usual ENT. He took time to describe the ND procedure in some detail, including the kinds of complications he may encounter. I understand a little better why they do not promise not to "take" the SAN, IJV, or SCM muscle before surgery... but he at least said that he wouldn't "take" these unless it was necessary to do so.

In the case of the SAN, he said that in some cases the lymph nodes easily pull away but in other cases they tend to "stick"... if they "stick", the SAN can be damaged while removing the lymph nodes. On the other hand, before removing them, they'll take a biopsy of the lymph nodes that surround the SAN and do a quick analysis... if they seem to be cancerous, he'll just cut the SAN and take it to be certain he's gotten all the disease.

The IJV and the SCM muscle is similar. He said some surgeons/institutions just go ahead and "take" the SCM muscle as standard practice... doing so makes it easier to remove all the lymph nodes that need removing. But that is not his practice; as with the SAN, he only removes the SCM muscle if he needs to do so.

Some nerves are necessarily cut and, as a result, I will end up feeling numb on the left side of my neck/face. They say this numbness will go away over a period of 1-6 months... but there may remain a slight difference in feeling between the left and right sides. There is also a small (e.g. 3%) risk of damaging a "mandibular" nerve; this would give me a crooked smile.

So the decision is up to me. My MO threw some statistics at me but even I can't absorb their significance in such brief conversations... she talked about false-negatives on PET/CT scans (whereas, last time I met with her, she was fairly confident that the false-negative rate was low) and said that 30% to 45% of cases like mine have residual disease (whereas, last time I met with her, she said it was 25%). That includes both HPV+ and HPV- cases and she said she's seen some "informal" data that indicates HPV+ cases generally do better (as expected, since its known that HPV+ cases respond better to chemo-radiation treatment)... so maybe my statistic is closer to 30%. But she said its not 5%. She said if I was N2a or less, or if my nodal mass was completely resolved, she might not recommend surgery... but I was N3 and my nodal mass is only partially resolved so she recommends surgery just to be safe.

Whereas, in my last appointment, my MO talked about possibly deferring the decision... now she says I need to decide either to have the surgery or not to have the surgery. I think she may have changed her tune on this after talking with my RO... he had frowned when I told him that she suggested deferral was an option.

Like my ENT, Surgeon #2 says we have a "window" now to do the surgery... but I had assumed this was because they were concerned that the cancer would be growing... instead, its because they know that my tissues will soon get to be fibrous (from the radiation) and this will make the surgery difficult. [So now I need to worry about getting fibrous tissues - what will this feel like, how will it influence my quality of life, and what can I do to mitigate this?]

Of course, if I have the surgery, the tissue will be examined and my guess is that it will show negative for the disease - in which case they want me to look on the plus side: that recurrence is highly unlikely.

So, whereas last time my MO left me believing that a negative PET/CT would indicate I don't need surgery... here I find that she still recommends surgery. Basically, she's one of 3 doctors (the others being my RO and my ENT) who are recommending surgery simply because the large N3 nodal mass only shrank to a 2 cm x 1.6 cm x 3.9 cm mass. At this point, there is nothing to indicate its anything but benign; its not growing (my MO even remarked that it feels a little softer than a couple weeks ago) and the PET shows negative. Nonetheless, I'm statistically at risk and they like to operate before the tissues become too fibrous. I'm scheduled to get an ultrasound-guided FNA, but I'm sure a negative result wouldn't change their opinion. Only Surgeon #2 says that he is "on the fence" about this.

This is a tough decision.

PS) A colleague had ND surgery many years ago by Dr Wayne Koch at JHU. He felt that Dr. Koch did a great job for him. Also, my MO knew immediately who I was talking about (I referred to "Koch at JHU", and she said "Wayne") and she spoke highly of him. So Dr Koch is another surgeon for me to consider.

Rob,

You certainly have taken an analytical approach to this problem and if you where trying to diagnose and treat a problem that was not so deadly in nature I would probably agree with you.

For me this is not a question of probabilities one way or the other where the outcome can result in an unpleasant result. This is a case where worst-case scenario is death. If you make the wrong bet, you might just pay with your life. I would approach this question as one in which I was trying to avoid the worst case outcome.

Kelly

Hi Kelly,

Thanks for saying I've taken an analytical approach to the problem. The comment really speaks to who I am. Ever since I was a small child (and had a crush on my 4th grade math teacher), I have approached problems analytically... its a source of pride really.

I understand (and agree with) the gist of what you are saying, but even the doctors know that probabilities have everything to do with this. They are constantly weighing probabilities as well as costs. In this case, one of the costs is death while the other cost is quality of life (since ND surgery can lead to lifelong shoulder pain and weakness as well as other unpleasant side effects). [Mathematically, what we're talking about is Bayesian analysis.]

There is a certain probability that I have live cancer cells in my neck. The questions are: (1) What is that probability for me, and (2) Is that probability large enough to warrant having the ND? If the average healthy Joe (who is not a cancer patient) walks in off the street and asks the doctor if he should have ND, the doctor (of course) will say no... because the probability that Joe has live cancer cells in his neck is miniscule. However, if for any reason this probability gets above 5 or 10 percent, the doctor is likely to recommend ND. If he recommended ND at the 0.1% level... it means he's caused 999 people to suffer the ill-effects of surgery just to have the *possibility* of saving 1 life.

The reason the doctors do all their tests is to try and ascertain what the probabilities are. No test is perfect but a good test will have a low probability of a false negative AND a low probability of a false positive; medical lingo uses the terms "sensitivity" and "specificity"... in communications they refer to a "receiver operating characteristic (ROC)". Unfortunately, the tests the doctors have to detect live cancer cells in my neck are NOT very good. So far, there is nothing to suggest that I have live cancer cells in my neck other than the fact that my nodal mass is still fairly large: it doesn't seem to be growing and the PET/CT result is negative - but the worry is that this result might be a "false negative". I'll have a biopsy done but, even if that's negative, we'll still worry that this too could be a false negative.

I'm now starting to dig into the medical technical literature on this and have found a bunch of interesting links:

http://www3.interscience.wiley.com/journal/117914986/abstract
http://www3.interscience.wiley.com/journal/104535343/abstract
http://www.springerlink.com/content/6144q68r7m763867/
http://linkinghub.elsevier.com/retrieve/pii/S0194599807002811
http://archotol.ama-assn.org/cgi/content/extract/134/10/1122
http://jco.ascopubs.org/cgi/content/abstract/24/9/1421
http://clinicaltrials.gov/ct2/show/NCT00720070
http://www.issoonline.com/content/1/1/6

As I read more, I become more convinced that I should go ahead and have this surgery just to be safe. But its unfortunate that we don't know more. For example, the statistics I've seen do not distinguish between HPV+ and HPV- patients. For example, if I see a statistic that says (I'm making this up):

"30% of HNSCC patients who started with N2 or N3 disease, and underwent chemoradiation treatment to at least 70 Gy, were subsequently found (after neck dissection) to have residual disease in the removed lymph nodes"

I wonder: Were these patients HPV+ or were they HPV- ??? We know that HPV+ patients respond much better to chemoradiation treatment than HPV- patients so, if they were all (or mostly) HPV- patients, its still quite possible that the 30% figures drops to less than 5% if the patients are HPV+ like me. Unfortunately, its only recently that HPV status has been shown to be an important factor in HNSCC patients, so (to my knowledge) the studies haven't been done yet.

So what is the probability for me? I don't know. That's what I'm trying to figure out. Yes, its likely that I'll find this probability is large and so will end up choosing to have the surgery... but as I take time to do this research, I'll also try to figure out who I should choose to do the surgery and what, if anything, can be done to mitigate (or avoid) any bad side-effects of the surgery. I'll do everything I can with the time I have available to try and get the best possible outcome. No sense being cavalier about this.

Rob

OK Rob, fair enough.

The other action I took was to take my doctors recommended course of treatment and get it to three of the best institutions I could find and get second opinions (U. Penn, University of Michigan, Johns Hopkins). They all concurred.

Kelly

Rob

Well thought out plan. For what it is worth, my experience with the neck dissection is that is was not as bad in affecting my quality of life as I had feared. Granted I was lucky in that my surgeon was able to spare all the muscles and nerves (but like your Surgeon #2 there were no guarantees going in, just a promise to try and avoid it), but the numbness is slowly going partially away now 8 months later. I did need extensive physical therapy on my left shoulder as even without being cut, they were traumatized. It was a kicker though to go through this procedure only to find out that not one of the lymph nodes removed was cancerous. Oh, the old Bayesian dilemma. You do the math and you pay the price

Kelly & Charm,

Thanks for the responses. I just got back from an evening of live music at a favorite bar. There I spoke with a gal whose former boyfriend had similar cancer. Turns out he refused exactly the ND surgery that I'm contemplating. He was fine for 7 years, then he had a recurrence and it killed him. Sobering story.

Nice to know about the numbness and the need for PT... better for me to go into this mentally prepared. They say you should be pleased to know none of the lymph nodes were cancerous, as it bodes well for ultimate survival; on that basis I'll offer my congratulations. What that ignores, of course, is the implication that surgery wasn't needed; so all you got for your pain & suffering was some peace of mind.

Cheers, Rob

OK. I just sent a note to my MO saying that I will have the ND.

Nice one Rob xx

Good Call Rob!

I have had false negatives with a PET scan and FNA in relation to a cancerous node that was identified as suspicious on a CT scan. The decision when faced with the conflicting information was to remove the suspicious node, do a frozen section, then if it came back positive (which it did), proceed to conduct a selective neck dissection. This was the only positive node, but due to extracapsular spread I then had chemo/radiation.

On the whole I have to say the impact of the ND was not as great as the Radiation.....but I do have a crooked smile!

All the best!

Sue

Rob,

Tough call. let us know how it turns out.

Kelly

Hi Everyone,

I'm facing a very similar decision right now. I finished 35 rounds of Rad on 8/25/09 and I still have PET activity on my left side with some faint 'questionable' ones on my right side (my left tongue was primary). My ENT wanted to do the radiation to hopefully kill everything off so I wouldn't have to endure the ND...but the PET still lights up. Now I'm scheduled for a modified radical ND on the left side on 11/25. I'm scared because I know radiated skin doesn't heal well...and I'm afraid of major nerve damage.

Has anyone endured this post radiation and found it to be the best choice?

Hi Belinda,

We seem to be on the same schedule. I completed 36 IMRT treatments on 8/26/09 and my ND is scheduled for 12/01/09. I too was hoping to avoid ND.

However, we're different in that your PET is positive while mine is negative. Still, I'm proceeding with surgery and, if I were you, I'd choose the surgery too. If your N2 disease had "completely resolved" then surgery might not be needed; but it hasn't "completely resolved". Why? Because this phrase means two things: (1) it means that the nodes remaining in your neck have shrunk to substantially less than 2 cm in size, and (2) they show up negative on a PET. Although my nodal mass was negative, it was too large. In your case, I don't know the size of your nodes but you've told us they are positive. For both of us, the statistics indicate a high chance of recurrence in the neck - probably around 30% - and such a recurrence would be a death sentence. But if you get the surgery, the chance of neck recurrence is much smaller, probably around 5%. Here are some links to research papers:

http://www.ncbi.nlm.nih.gov/pubmed/19572281
http://www.ncbi.nlm.nih.gov/pubmed/17520763
http://www.ncbi.nlm.nih.gov/pubmed/19031407
http://www3.interscience.wiley.com/journal/121606510/abstract
http://www.ncbi.nlm.nih.gov/pubmed/15555975
http://archotol.ama-assn.org/cgi/content/abstract/126/8/950

You are right to be afraid of nerve & muscle damage. Its quite possible that they'll remove your Spinal Accessory Nerve (SAN) and your Sternocleidomastoid (SCM) muscle. In this (worst case) scenario, your shoulder will droop and you'll have difficulty reaching for something over your head (e.g., it will be difficult to get a heavy jar down from a high cupboard)... but you'll still be able to do yard work and to play the piano (you may need to take lessons first ;-). Talk with your surgeon and see if he plans to try and spare the SAN and the SCM muscle; if he says he's not going to spare them, go get a second opinion from another surgeon. Some surgeons are rather callous and just take these out unnecessarily because its easier (and faster) for them to get to the lymph nodes; other surgeons carefully take their time and try to spare them. Notice I said "try". Nobody will give you a guarantee; it will depend on what they find when they open you up. For example: once they begin surgery they'll send biopsies to the pathology lab and, if those biopsies show the presence of viable cancer cells, it may be necessary for them to remove the SAN and the SCM muscle to be certain that they get all the cancer out.

There are 5 levels of lymph nodes. My surgeon tells me he plans to remove Levels 1, 2A, 3, and 4... he "might" remove Level 2B... but he probably won't remove Level 5. Everyone is different so what the surgeon plans for you depends on where your disease is located. The "standard" ND procedure removes all of these levels.

http://en.wikipedia.org/wiki/Neck_dissection

I'm told the surgeons cannot avoid cutting some of the more minor nerves; this just goes with the territory. As a result, one usually experiences numbness in the face and neck. Fortunately, I'm told these nerves grow back over time; so the numbness is likely to go away after about 6 months.

Good luck, Rob

I just found this 2009 Master's Thesis entitled "Neck and shoulder function after neck dissection" and thought it would be of interest to others here.

http://igitur-archive.library.uu.nl/student-theses/2009-1026-200125/UUindex.html

I haven't read it (yet) myself, so I cannot comment on its contents.

Rob

You guys having the neck dissection - make certain they do NOT take you submandible saliva glands unless there is a real reason to. The guy who did my first ND arbitrailly removes them 'because radiation will kill them anyway'. Not so necessarily. But they definely aren't going to work if they are in the bucket. Check it out.

Take care,
Eileen

Also, another study on neck dissections concludes that if the CT scan shows all clear, the subsequent neck dissection did also.
Arch Otolaryn article on ND
that's why my ENT did not do one the first time around. Interestingly enough, these were all CTs not Petscans

Guess I should add Dick's 2002 experience with the neck dissection. They decided on the ND because 2 nodes were noted / marked on his xrays. However, upon removal of those and other nodes, no cancer was found, which was part of the reason he did not have radiation and chemo (along with the clear margins, lack of spread, small size, and the well differentiated DX). He has regained most if not all of his movement in his shoulders, neck, etc., but still retains a barely detectable numbness by his ear. The negative ND was considered in his treatment plan. It is interesting how some don't need the ND, some have it before treatment, and others, after. He had it done because of the questionable nodes. He lost no salivary function. Don't know if any of this helps or not.

Lots of good comments here -- just a few comments to amplify on some things:

1. My CCC utilized the theory that doing the Neck Dissection first, before radiation and chemo, had the advantages of a)cutting off the metastatic highway immediately; and b)making the surgery itself easier, as radiated tissue is not involved. One doctor explained that since they don't know with certainty how the tumors will respond to the radiation, allowing nodal metastasis to remain in place increases risk of further spread before the radiation can have effect. (Of course, much is dependent on tumor location, etc.)

2. I had both submandibular glands removed in my ND (both negative for SCC). I get along pretty well, but then again, don't know how I would be doing if I had them.

3. Most of the literature indicates that avoiding Level V significantly reduces the incidence of shoulder problems, as the SAN and brachial plexus are less likely to be compromised. I had Level 5 removed on both sides. The price is pretty persistent shoulder pain, some weakness in lifting or holding thigns for extended periods of time.

I can still hit a 5 iron 190 yards, though, so all is good. ;-)

Jeff,

Thanks VERY much for your Comment #3. I had not heard this (and, I'd be delighted if you can point me to some of that literature). Fortunately for me, there are no plans to remove my Level 5... so perhaps I need not worry as much about persistent pain.

==

Although the Parotid glands are much larger, it seems the Submandibular glands are responsible for 70% of saliva production.

<http://en.wikipedia.org/wiki/Salivary_gland>

My impression is that RO's have traditionally worried most about collateral damage to the Parotids but rarely gave the Submandibulars much thought. However, I think that has been changing the past few years... and I've seen a few articles linking preservation of the Submandibulars to higher quality of life (and, in particular, less xerostomia). I think the Submandibulars have an important functional role that should not be discounted.

==

I did a lot of research seeking ways to try and preserve my salivary function but, in the end, gave up and accepted the recommendations of my medical team. Some of the ideas I explored (to varying degrees) included:

a) Tomotherapy. This is a new device technology that is capable of more precisely targeting the radiation that current IMRT technology. Thus, in principle, one can reduce the collateral damage to healthy tissues. However, I believe one needs an RO (and associated specialists) who is VERY highly experienced in treating H&N cancer via Tomotherapy and I could not find one that I deemed satisfactory. If the choice is better tools vs better skill in using the tools, I'd choose the better skill.

b) Amifostine. I got into big arguments with my MO about this as I persistently pestered her about using this. In the end, she (and my RO) flatly refused to give me Amifostine. Her initial arguments were all about the nasty side-effects of Amifostine but, as these would be temporary, it seemed to me worth going through if it might preserve my salivary function. A stronger argument was that those nasty side-effects might interrupt (and thereby reduce the efficacy) of my chemoradiation treatment; but still I felt it should be possible to at least try Amifostine and then stop using it if the side-effects became severe. In the end, I was convinced by a close reading of the most recent ASTO guidelines; these guidelines said Amifostine was not recommended with chemoradiation treatment due to the lack of evidence for its efficacy. Some studies they cited did find that Amifostine was effective, but such studies were discounted because they were not placebo-controlled; the larger placebo-controlled study they cited showed no greater efficacy than placebo. (Whereupon I asked if they could just give me the placebo ;-) [Note: ASTO guidelines did say Amifostine could be considered when radiation-only treatment was planned. It was only for chemoradiation treatment that they recommended against Amifostine.]

c) Submandibular Gland Transfer. This is an unusual surgical procedure pioneered by a Canadian surgeon. The idea is, prior to radiation treatment, to move the at-risk Submandibular gland to the submental space where it would be out of harm's way. This seemed like a very clever idea, but I didn't explore this too deeply because I couldn't delay my radiation treatments any longer and it was clear that it would take weeks to find a surgeon familiar with the procedure, have the surgery, and recover; furthermore, having this surgery might require replanning the radiation treatment (which would take even more time). Later (after my radiation treatment), my ENT said he was skeptical about this and he told me that only the surgeon who developed the procedure has reported success in preserving glandular function.

d) A variety of other ideas that were too experimental to consider seriously.

==

There are pros and cons regarding having ND before (vs after) chemo & radiation treatment and different medical teams will offer different recommendations. In my case, we hoped to avoid ND altogether so we started with Induction Chemotherapy and followed that by Chemoradiation Therapy. If that treatment had reduced the huge (N3: greater than 6 cm) nodal mass in my neck to about 2 cm or less, I'm sure my MO and other doctors in my team would have said I don't need ND. Unfortunately, it was only reduced to about 4 cm, so I'm having the surgery.

Rob

My situation being different than most of the people on the forum, I think it's time for me to tell my experience.

I had a CT scan before my first visit with my surgeon at Fox Chase Cancer Center (a CCC) which was "all clear". This had been ordered by the oral surgeon in my office that had done the biopsy.

The surgeon told me that in his experience (which is fairly extensive) he has found cancerous nodes in approximately 15% of cases where the CT had negative findings. He gave me my choice, but he recommended the ND in conjunction with the partial glossectomy. To me, this was a no brainer. If he had said 0%, I would have been OK. To me 15% was not low enough.

I have often wondered, if a CT is negative, how long can you assume that it will still be negative, if the surgery is not done immediately after the CT? A minute, an hour, a day, a month???

Again, my decision was a no brainer for me, as my surgery was about 3 weeks after the CT and I didn't want to take any chances. The ND was a cakewalk compared to the glossectomy. My neck is numb, but ask me if I care. I remember the smile I managed after the pathology report said all clear.

Note: I had no radiation and no chemo.

Here is one study that refers to the better experience if Level V not dissected: http://www.ncbi.nlm.nih.gov/pubmed/10764008


Some fairly recent studies have pretty much debunked the theory that Amifostine compromises the efficacy of therapy. I will look and see if I can find them.

I had Amifostine daily before radiation. No side effects for the first 2 - 3 weeks, then began having brief bouts of nausea that would hit with amazing consistency -- would strike when I was walking to the car at almost the exact location. It would generally pass by the time I was out of the parking garage.

Despite having both submandibular glands removed my salivary function is pretty good.

Rob,
I'm pretty analytical like you. I find your threads very helpful for me. I'm going through IMRT CRT right now and am already starting to look for a good surgeon in case I need to move fast after treatment.

Thank you for posting this info and your experiences.

And most of all, I wish you the best.

Joel

Rob,
My thoughts and best wishes are with you on your surgery. Please keep us updated on how you are.

Regards,
Joel

Hello all,

Sorry I haven't been around for awhile... and that I don't feel up to responding to all questions put to me... but I thought I'd share how my surgery went yesterday.

In brief, the outcome was not as good as I'd hoped. But it was certainly the right thing to do... as I would most definitely have had a recurrence if I didn't have this surgery.

The surgeon found tissues that were still infected by SCC. As a consequence, he took out Levels 1-4 (including both 2A and 2B), and I think he took out a good bit of Level 5, as well as the accessory nerve and the sternocleidomastoid muscle. He also removed part of my Parotid gland and I think he took a few biopsies as well. The full pathology report will be available next week and I'll need additional discussions before I fully understand it all... but I think he said that the nodal mass shrunk in a haphazard manner (like swiss cheese, with holes in it) such that some cancer cells may not have remained encapsulated and could be floating around the area. Of course, they would be below a level that would be detectable on a PET scan... but he suggested that additional radiation treatment may be in order and, to support that possibility, I think he said he left behind some sort of ring of vascular clamps (which I think are like sutures that dissolve over time) around the area of concern to serve as a target for the RO.

So now we know a lot more than we ever could have learned from non-invasive techniques (like PET scans). My medical team will review the results over the next few weeks and recommend some next steps... but its now fairly clear that I'm not yet out of the woods (even though the surgery was a step in the right direction).

At the moment, I'm still in-patient and just need to focus on recovery.

Rob

Hang in there and lets pray they got it all.

What caused the surgery in the first place? Was it because a node didn't shrink all the way down from the initial rad?

Rob,

Hang tough my friend.

Kelly

Steady recovery, Rob

Thanks all. They let me go home today. That's a nice step in the right direction. I see my surgeon again Wednesday when I'll get my staples out. I was pleased that my MO came in to talk with me last night; she and the rest of my team haven't had much time to confer yet... and the pathology report won't be available until Tuesday. I told her I feel we're now moving into uncharted territory where I'll need to rely very heavily on their experience & advice. She said I've received the entire spectrum of treatment; nothings been left out simply to make my life easier. Normally there is no further treatment from here, but she said they will discuss the possibility of extra radiation. My MO also said she went over the PET/CT scans once again and confirmed they didn't show much FDG uptake; hopefully the pathology report will be illuminating.

BTW: My surgeon said he sent my tissue samples from the OR to the pathologist and then spoke with the pathologist by phone. My surgeon asked the pathologist if he was CERTAIN there was SCC present and the pathologist responded affirmatively before he proceeded to remove my accessory nerve and SCM muscle. My MO said my surgeon told her he felt the cancer may have invaded the SCM muscle. Also, my surgeon told me that, while he felt the surgery itself went very well and was a success, it was a difficult procedure... he spent nearly 4 hours in the OR where he would normally spend only 2.5 hours... and he's concerned for me clinically.

David: I had the surgery because the mass of lymph nodes in my neck didn't shrink enough. It was over 6 cm (N3) before any treatment. Then I had Induction Chemo (9 weeks, 3 rounds, TPF) followed by ChemoRadiation (7 weeks, IMRT with weekly carboplatin and taxotere). This shrunk the mass to 4 cm... if it was less than 2 cm, they would have deemed it a "complete response" and not recommended surgery; but, because it was an "incomplete response", 3 doctors recommended surgery and 1 was ambivalent. I elected to proceed.

I'll start outpatient PT soon too. My arm/neck/shoulder function isn't too bad, but I need to encourage my other muscles & nerves to compensate properly. Also, I want to avoid getting a "frozen shoulder"... not that I really understand what that is. But this weekend I'll mostly just take it easy.

Rob

a google search turned up this interesting site on "frozen shoulder" FSS which basically says get PT. while my surgeon was able to avoid the SCM, I still had to take PT to avoid frozen shoulder. The good news is that PT has a great track record in healing this.
Hang in their brother,
Charm

I am the the original author of this thread and had the ND done this past week. It was a selective ND. Nine nodes were removed. Pathology was negative all around. I have full motion of my right arm. All nerves were preserved. The operation is very doable and now one week post the incision is almost healed. I just wanted to say that its not something to be afraid of. If it's indicated for your treatment don't hesitate, I've had teeth pulled that hurt more than this.

Rick,

If you had 9 nodes removed and they were all negative, my question is why did they recommend the ND in the first place? I mean were they all large? Did I already ask this question? Sorry post so much.

Rick

Very glad that your ND did not show any cancer even though that means you probably did not need a ND in the first place. That is consistent with the 50% figure of unnecessary ND in my response to your original post. However there isn't any good way that I know of to tell which 50% you are in before the ND.
Now that the surgery is over and you are recovering so well, ask your ENT for a script for physical therapy. Even when the operation goes so smoothly (mine did also), the trauma to the muscles and nerves that were preserved (they have to be moved around to get to the nodes) usually requires therapy to get them back in the game. Your other muscles will try to compensate but it's better to safe than sorry here.
Charm

Further update:

So my medical team unanimously recommended that I undergo a 2nd round of chemo-radiation therapy (CRT)... and I agreed. On Wednesday they'll do a "simulation" to start the planning process. Treatment will begin in mid-January and be comprised of daily treatment for 6 weeks. The weekly chemo will include Erbitux this time (for the first time), plus one or two other sensitizing chemicals.

Its really depressing news after all I've been through already. But the risk of recurrence without a 2nd CRT just seems too high... and a recurrence would almost certainly mean death... so I have to do it. My RO says I'll suffer severe fibrosis which will make moving my neck difficult. [Please spare me the Al Gore jokes.] My only method to combat this will be intensive Physical Therapy -- probably for a couple years. A small plus is that the radiation will be aimed at my neck, not my throat, so some of the nastiness I endured on my 1st CRT should not happen. Also fortunate is the fact that my surgeon had the foresight to install a ring of small metal vascular clamps around the high-risk region; this will provide a target for my RO to aim at.

There doesn't seem to be too much else to say. My medical team says they were all surprised... in large part because my PET/CT scan before surgery was negative.

I guess this discussion no longer belongs on this "neck dissection" thread.

Rob

Rob,

What a bummer but you know we will all be here doing whatever we can from this side.

Rob

It's a bummer as I know from personal experience to have to get more radiation and chemo after a ND. The good news is that the fibrosis of your neck will indeed get better with physical therapy. When I got out of surgery the left side of my neck was not only numb but felt like petrified wood. Now it only feels like Kelvar
Good luck with the Erbitux - I was real big on it at first but it toasted my facial skin so badly and then prevented it from regrowing so I needed to put hydrogel dressings they use on burn victims. Not as toxic as the carboplatin I took the second time around which turned out easier to tolerate. Make sure you stay on top of keeping the skin lubricated. The RO said it was the worst reaction to Erbitux out of all of my CCC oral cancer patients they have ever seen so it's unlikely yours will be so bad.

The fun starts on Wed 6 Jan with a "verification simulation". The first actual radiation (IMRT) will be Thu 7 Jan... then daily for about 30 treatments, ending about Fri 19 Feb.

Its amazing this is only 3 weeks away... I still have a swollen painful jaw (and difficulty opening my mouth) from the surgery as well as pain in my tongue/tonsil from the previous CRT which ended 26 Aug. I need to focus on some fast healing.

Tomorrow (12/18) I have my first PT session: we'll address exercises/training to compensate for the functional loss of my SCM muscle, but we'll also get started on range-of-motion exercises for my neck in order to pre�mpt the fibrosis.

Erbitux does seem to have a lot of nasty side effects, but I think it might really help. Unlike the chemicals I had last time, Carboplatin and Taxotere, which simply sensitize "fast growing" cells to radiation, the Erbitux sensitizes cells that express an abundance of EGFR (epidermal growth factor receptor) on their surface. All cells express EGFR, but SCC cells have a great deal more than usual. I'll still have some Carboplatin and/or Taxotere along with the Erbitux, but I like the idea of doing things a little differently this time since the previous CRT obviously didn't get it all.

Right after New Year (shortly before treatment begins), I'll start putting Aveeno lotion on my neck each morning and evening. I did this religiously for my last CRT and I had very few/mild skin problems... the skin finally broke in the 7th week of treatment (and I started using an astringent to help ward off infections) but it healed again about a week after treatment concluded. Things may not be the same this time around (because of the Erbitux, the different primary targeting of my neck tissues instead of my tonsil, and the shorter 6 weeks of treatment instead of 7) but I hope the skin pain/discomfort won't be any worse than before.

Charm: Thanks... its good to know the fibrosis will get better with PT. This is the most worrisome side effect for me. Like many folks, I can tolerate a lot of nasty stuff if I have a reasonable expectation that things will improve... but its especially depressing to think I'll be stuck with it forever.

Rob

Rob,
Thanks for posting; they're very informative and helpful. I'm wishing you the best as well.

Joel

I learned that my concurrent chemo will include Erbitux, Carboplatin & Taxol.
The first of these weekly chemo treatments will be on 7 Jan 2010... the same
day as the first of my daily IMRT treatments.

Unfortunately, I'm having trouble opening my mouth (trismus) because of the
neck dissection surgery. I used to be able to fit 3 fingers between my teeth
but now I can only fit 2 fingers. A specialist measured this opening at 31 mm
and says I should buy/use a "TheraBite" system. Unfortunately, my insurance
(BCBS) says they won't pay for this $400 device. So I'll try to pay for this with
my Health FSA which at least gives me a small tax break.

I've also learned that my job should be protected by the Americans with
Disabilities Act (ADA) and related statutes. The treatment I had in 2009
used up all the Short Term Disability (STD) time I had available, so now
my employer says I have to use Long Term Disability (LTD). Because I've
been paying my LTD premiums (for almost 24 years) with post-tax dollars,
this should give me 2/3 of my pay as a tax-free benefit. However, my
employer says they have to terminate me... with no assurance that they'll
be able to give me my job back when I'm ready to return. So I spoke with
a labor attorney and learned that the ADA requires my employer to give
me the time off (and to give me my job back) as a "reasonable accommodation
to my need for medical treatment." My employer hasn't yet actually denied
me my job back, but if they do I can file suit against them under the ADA.

Rob

I wish you the best Rob. It sounds like you have an excellent team committed to wiping this out completely.

Keep us posted. It's good to hear from you.

Joel

Joel, Charm, and others...

Thank you so much for all your encouraging remarks. They really help.

I hate talking about myself so much and hope I'll soon find energy to help provide useful information to others here. These past few weeks have been depressing for several reasons: (1) my cancer is not yet gone, so I need to undergo still more treatment, (2) the treatment means I'll need more time off from work, so my employer decided to terminate me, and (3) my mother is now on oxygen & drugs that amount to end-of-life care... these are efforts to reduce her chronic pain & anxiety, so she is less distressed and doesn't suffer so much.

OFF TOPIC: I have been my mother's sole caregiver for the past 12+ years, during which time I've watched her chronic pain grow worse and seen her develop Alzheimer's Disease (among other issues). This once highly intelligent and articulate woman can now barely assemble a coherent sentence. When I was diagnosed with cancer, I could no longer provide the daily care she needs; so I moved her to a "supportive care" environment where she has her own studio apartment (with her own furniture) on a floor with 24/7 staffing. [This is part of a Medicaid-funded PACE "Program of All-inclusive Care for the Elderly" (which I highly recommend) working in conjunction with a city-organized low-income housing program. PACE is a more dignified alternative to nursing home care for those who prefer to live in their own home. Using a team-oriented approach, PACE provides all the assistance an elderly person needs to continue living safely at home. We stumbled upon this 2 years ago and its been a fabulous program.] But my mother continues to decline, both physically and mentally, such that it is becoming clear she will not live much longer. In the interim, I hope for (and cherish) any small moments of joy we can share.

Rob