Best cancer center for H & N?

Melisande

I would love to hear recommendations for great H & N cancer centers.

 

Currently, I am being worked up at Moffitt and was quite satisfied with the way things were progressing up until last week. The main issues I am facing are lack of transparency in communication and a sense that am being manipulated. These two issues are closely related. Long story short, they are basically insisting that I have the standard exploratory H & N surgery in a last ditch attempt to find my tumor (currently have unknown primary). I have happily had all the tests up until now — CT scans, PET, 2 clinical exams (the kind where they stick that thin tube with a light up your nose and down your throat) & endoscopy. Nothing in the way of a primary have been found so far. I will be having a broncoscopy tomorrow. I expect that to be negative too. 

 

I understand that H & N exploratory surgery is part of the standard workup for H & N with unknown primary when all else has failed. And in general the success rate is high enough to warrant it. However, this is only true for those with nodal involvement at the upper and mid neck levels which would point to a primary in the tonsils or base of tongue — two sites which are frequently investigated. It is not unusally fruitful for those who have exclusively lower node involvement (I have one supraclavicular lymph node and two in my chest.) And yet they are insisting I go through with it anyway. No treatment plan until you have this surgery. (My hunch is that it is simply blanket departmental policy for all H & N of unknown primary.)

 

I have gotten a second second opinion from a great local oncological ENT/surgeon. He said he definitely would not recommended this kind of exploratory surgery in my case. He thought it was definitely overkill. I would keep on working with him and the local people, but the problem is the unevenness of quality. This ENT/surgeon is really well-known and respected in the area, but the hospital he works for is not a national cancer center and I am concerned about the quality of other members of the team (the radiation oncologis, who for example, has been MIA for almost a week now).

So, in order not to feel psychologically railroaded into treatment I do not want, I am thinking of going for a third opinion. So, again, which center do you think would be really good while also being respectful of my (reasonable) wishes?

swopoe

My husband had a known

My husband had a known primary- oral tongue. But we trusted his Doctor completely- Dr. Ron Karni- with Memorial Hermann/Univ of Texas in Houston. He is consistently ranked the best in the area. I would recommend him to absolutely anyone. Best of luck to you.

wbcgaruss

I am Sorry They Can't Find

Your primary. You have some tough decisions to make. Will it cause problems getting exploratory surgery or is it minimally invasive. If you are completely satisfied with the facility you may want to endure the exploratory surgery. You may want to go with your ENT/surgeon and the facility he's at if you can get him to personally oversee your case. That would give you a measure of comfort. Or as you say go to a third facility and opinion but with cancer, we always feel the time is of the essence and I am confident you want to get a plan in place and get started. Are there any other facilities nearby say within 50-75 miles? If travel is not an issue for you there are highly rated cancer centers around the country. As I said you have some difficult decisions so wishing you the best with your thoughts and decisions and Prayers Your Way. 

johnsonbl

The concerning part is the supraclavicular node...

You already mention that if the affected nodes are higher in the neck that cure rate is pretty good and the primary is typically located in the tonsils, tongue.  When nodes are in the lower neck around the clavicle they can be distant mets from lower in the body somewhere, typically lung but also breast or other areas.  So these are hard ones.

It doesn't sound like you've had anything biopsied yet and I'm not completely clear on what they mean by "exploratory surgery"...if they are intending to go in and get that node out and check the pathology on it then that makes perfect sense.  You say you have two nodes in your chest...do you mean lymph nodes or did they see these on imaging in your lungs?

At any rate, given the location of your nodes, you are at high risk of having a primary below the neck somewhere and that would obviously mean treatment for head and neck primary would be unsuccessful.

A second opinion could be warranted if you are uncomfortable with the proposed plan but I would seek care from another NCI designated cancer center.  Do not go to community hospital.  Cancers of unknown primaries are very rare...and it is important to go to a center where they see 30 or 40 per year vs. a small hospital or practice where they might see 1 per year.  My guess is that the first step at another center is going to be surgery to get those nodes out so that they can look at the pathology on them and try to determine where they might be originating.  From there they can then put a treatment plan together.

I would highly recommend the University of Iowa Hospitals and Clinics...they are an NCI designated center and my team was excellent.  I also work there so I'm very biased.  :-)

Good luck.

 

Brandon

camlitlow

Unknown primary

Hi, I was sort of in the same boat. I had a enlarged lymph node but they could not find the primary. I had bilateral modified neck disection with a concurrent biopsy while I was under. Long story short, the "primary" was located in the left sulcos (area between the base of tongue and the tonsil bed) and only one lymph node was involved. The primary was not even really a tumor but more a patch of cells. Doctor said it was odd to get it there but it was the only place from the biopsy that showed cancer.Said there was a chance he got all of the cancer with the primary but better safe than sorry.

I am currently going through 33 treatments on rad on the left side (half way down) via Tomotherapy.

skidog

definitely

get another opinion. I got 3 opinions and went with Mayo Clinic in Rochester MN. one lymph node and unknown primary but my right tonsil area lit up a bit. 3 weeks later had a biopsy done at UW Carbonce cancer center and my ENT came up with nothing.  She initially recommended surgery first but after the biopsy said only rads and chemo. I went with Proton Beam rads only at Mayo. best decision for me. 14 months out...NED. i suffered very few hard side affects. check out my story for full details. good luck. you got this!

Logan51

Melisande

I was NPC w/unknown Primary back in 2008, and the Rad Dr. ordered a second 11th-hour biopsy for the ENT Dr. to try and find a Primary, which he could not find.

The difference is NPC and that I had nothing going on in the chest, like you have. I had 2 enlarged nodes around my adam's apple, and when the U of Iowa lab came back with a NPC diagnosis on the biopsy the focus expanded from my throat up to my nasal area- 20 places/session, with a total of 68 gys, which has resulted in a lot of Rad damage in the last 10 years. I cannot help but think the Rad Dr. did an overkill on the Rads, as the original plan was for 56. Saliva glands got aced/have spent $15-K on my teeth/am on 2 meds trying to help the spasms on both sides of my neck/ and just got put on a Feeding Tube for what's left of my life due to my throat being a scar tissue mess. Also, have to wonder if down the road the scar tissue buildup will effect my Epiglotis and I end up with a Trachea to breathe.

That said, I would advise getting another opinion and getting info on the amount of Rads they have planned. And where. I've survived over 10 years, and most of them have been entirely acceptable in terms of quality of life, but this FT for the rest of my life is a big negative. I turn 65 around Thanksgiving, and had hoped for more quality years.

Melisande

I wrote a long-ish response

I wrote a long-ish response to this, but it disappeared for some reason. 

A couple of points and a question.

I’ve already had a biopsy — squamous cell carcinoma.

I was pretty upset when I heard I had presumed lung cancer. However, some recent research done by a group at Sloan-Kettering shows that advanced non-small cell lung cancer with occult primary— a rare presentation of lung cancer (which it looks like I have) actually has much, much better outcomes than non-small cell lung cancer with known primary (which is almost always the case). I think the average 5 year survival for stage III NSCLC with occult primary was something like 62% vs. 15% for typical stage III NSCLC lung cancer. So I am hoping this is the case for me. This was the very first study done on outcomes this group. 

Also, I’d love to hear more about Proton therapy.

 

 

 

 

 

 

wbcgaruss

I have a Question

Have you had a PET scan? I believe a PET scan will show cancer anywhere in your body. They inject a radioactive dye in your body and you wait an hour for it to be absorbed by cancer cells and they then give you a whole-body scan and cancer absorbs it and it shows as a bright area. I think this will be showing cancer anywhere in your body so it should show a primary or any other cancer. I'm surprised they have not done one yet as anytime you have cancer somewhere they like to do this scan to make sure you do not have it anywhere else. I had a spot on my tongue last year that biopsied as cancer and before my ENT did anything else he ordered a PET scan to make sure that was the only place I had cancer. Luckily that was the only place.

 

Positron Emission Tomography and Computed Tomography (PET-CT) Scans. A PET scan may be combined with a CT scan at many cancer treatment centers. ... A PET-CT scan is one way to find cancer and learn its stage. Stage is a way to describe where the cancer is, if it has spread, and if it is changing how your organs work.

 

Link with more explanation--

https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/tests-and-procedures/positron-emission-tomography-and-computed-tomography-pet-ct-scans

Pclark21st

I would highly recommend d

I would highly recommend d Dana Fsrber in Boston.  Dr Hanna is a superb dr and has written many papers on the study of H and N cancers.  Use the rad Oncol was also great as is all of the other support people.  I would so go there for another opinion

phrannie51

How about this?

everyone has given thoughtful answers, so I’m just throwing this out there. Since you’re having a bronchoscopy tomorrow, I’m hoping they plan on biopsying that node in your chest.  What if you told the Dr. who wants to explore, that you want him to take out the superclavicular nodes while he‘s in there.  At least you’d get them out till you decide on the next step. Moffitt is a pretty good cancer center....we’ve had many people on here who were very happy with their treatment. I would not take this to a mid range hospital, which happens to have (lucky to have) a firecracker ENT.  You need care from several directions....ENT, and Oncologist and Radiation Onc. 

I have heard a few times of unknown primaries being primaries that the body already fought off, and it gone.....only the mets are left to tell the tale of the original cancer. 

P

Melisande

Yes, I have already had a PET

Yes, I have already had a PET scan. Nothing in my throat or anywhere else in my body lit up, but apparently the primary in H & N cancers can be really tiny.

 

Last I heard they were going to biopsy the difficult to reach node during the bronchoscopy.

 

Maybe I should just suck it up and continue with Moffitt, since I feel time is of the essence. I will know more after my consultation with the  surgeon tomorrow morning. I am a little concerned that I will have a needless tonsillectomy (do you need your tonsils for anything?) then either have a treatment delay or have them try to push me into treatment before I’ve completely recovered from the surgery. Also, there is the trust issue. When there is even talk of a tonsillectomy in my case, I feel a little like my body is being turned into a cash cow for them. Also I am feeling manipulated, but maybe this is just cancer culture, not something peculiar to Moffitt.

 

Example of manipulation: They told me I needed an endoscopy because there was a possibility of esophageal cancer. I believed them and even worried about esophageal cancer. My husband took an entire day off work to drive me down to Moffitt and be with me. However, when I spoke with the GI before the procedure and described the situation, he was almost laughing. He said there was no possible way I had esophageal cancer. There was no way it could be that far advanced in the nodes without my having a single symptom. So great. Why couldn’t they just tell me — look there is really no way that you have esophageal cancer, but on the extremely off chance you have some kind of bizarre presentation we are going to insist you have this procedure done? 

 

 

swopoe

I know nothing about

I know nothing about esophageal cancer, but you do not need your tonsils for anything. Just saying!

johnsonbl

Melisande said:

Yes, I have already had a PET

Yes, I have already had a PET scan. Nothing in my throat or anywhere else in my body lit up, but apparently the primary in H & N cancers can be really tiny.

 

Last I heard they were going to biopsy the difficult to reach node during the bronchoscopy.

 

Maybe I should just suck it up and continue with Moffitt, since I feel time is of the essence. I will know more after my consultation with the  surgeon tomorrow morning. I am a little concerned that I will have a needless tonsillectomy (do you need your tonsils for anything?) then either have a treatment delay or have them try to push me into treatment before I’ve completely recovered from the surgery. Also, there is the trust issue. When there is even talk of a tonsillectomy in my case, I feel a little like my body is being turned into a cash cow for them. Also I am feeling manipulated, but maybe this is just cancer culture, not something peculiar to Moffitt.

 

Example of manipulation: They told me I needed an endoscopy because there was a possibility of esophageal cancer. I believed them and even worried about esophageal cancer. My husband took an entire day off work to drive me down to Moffitt and be with me. However, when I spoke with the GI before the procedure and described the situation, he was almost laughing. He said there was no possible way I had esophageal cancer. There was no way it could be that far advanced in the nodes without my having a single symptom. So great. Why couldn’t they just tell me — look there is really no way that you have esophageal cancer, but on the extremely off chance you have some kind of bizarre presentation we are going to insist you have this procedure done? 

 

 

Darn...yes it seems like you are just a difficult case...

Absent anything coming up on the PET scan and with the possibility of your primary being about anywhere then unfortunately even the best docs (like those found at Moffitt) can't do much but guess and try and find the primary.

Obviously the problem would be that if they targeted head and neck and your primary was in your lung, or vice versa, you'd be worse for wear.

Re: the endoscopy, yeah they should have just phrased it like you did...that it's a super easy procedure that could easily catch something.

Good luck to you.  Hope they can figure out what exactly you're dealing with.

Brandon

Sabrina23

swopoe said:

I know nothing about

I know nothing about esophageal cancer, but you do not need your tonsils for anything. Just saying!

University of Miami excellent choice for H & N

I went to University of Miami - Sylvester Cancer Center and had excellent care not sure what part of the country you are in I might have missed that in your writings.  But know you are in our prayers for a good blessed outcome.  You deserve a break and I know the Good Lord has you in his arms.  I wish I knew more about esophageal cancer as well but many here on the forum are familiar with it so I konw they will be helpful and provide support. 

bugsyboy

Go

According to a recent study by US News and World Report, Moffitt is the #8 Cancer hospital in the U.S.  Of course, this doesn't mean you'll like or trust your doctor.  So, go someplace else and get a second or third opinion.  

We live in a rural area in North Georgia.  When I was diagnosed in 2014, the doctors here wanted to do everything - cutting, radiation, chemo - with no realy plan and were just going to throw everything at me to treat my SCC at the base of my tongue.  Before we let that happen, my wife and I went home and researched where to go for Cancer treatment.  After checking our insurance, we called MD Anderson in Houston, faxed all my paperwork, and within a week I was out there meeting with a TEAM of experts who came up with a plan that included 33 radiation treatments.  And that was it.  No surgery.  No chemo.

Moffitt is a great facility, but if you're having second thoughts about your doctor or your team, go try another facility.  H&N Cancer treatment brings you to the gates of Hell.  If you don't like or trust your team, your journey will be much more difficult and that would really suck.

Best of luck with whatever you decide.

Bugsy

gjkoos

You already mention that if

You already mention that if the affected nodes are higher in the neck that cure rate is pretty good and the primary is typically located in the tonsils, tongue.  When nodes are in the lower neck around the clavicle they can be distant mets from lower in the body somewhere, typically lung but also breast or other areas.  So these are hard ones.

motorcycleguy

Melisande,

My primary was in the left nasal cavity (Nasopharyngeal), and was too small to show up on a scan. My ENT Specialist found it during an exploratory procedure.

I don't know if this is the answer for you - but it was for me.

ratface

an outside perspective

Your research is admirable and reminds me of someone I knew ten years ago. I lived with the fear of spread to the lungs for almost four years. The medical field is littered with questionable practices but I have found that doctors in the cancer fields to be exceptional and dedicated and maybe not so apparant to me at the time of my diagnosis. If it's doable finacially and logistically, get it done. You are already in their system and on your way. You have to start treatment somewhere but you don't have to stay there. You obviously excel at research so don't be afraid to be your best advocate, and part of that is letting them make an informed diagnosis. I was treated in one of the most poorly regarded hospitals in metro chicago but with a brilliant radiation oncologist. I however differed with my ENT on treatment based on my own extensive research. I elected to have a neck disection agaist his recomendation. I self referred to one of the top Head and neck surgeons in Chicago and had my neck disection. In retrospect I'm not sure I was right, but I'm alive.  You are not limited to one hospital or surgeon, or protocol. Trust that cancer dosent't diminish intelligence. Treatment will evolve as circumstances change or as you decide it is necessary. Choose a horse, get on and ride, if it dosen't suit you make adjustments along the way, no one will take it personally.

Drivingdaisy

Cancer Centers

MD Anderson.  Their is a division by Mayo in Jacksonville, FL.  Wish I had gone there rather than staying local.  Would have gotten better treatment & NOT the over kill type.  Mine was stage 2 but actually after all was said and done Stage 1, HPV 16+ no lymph but was totally blasted & now zero Salivary glands was small patch of skin on left tonsil skin, thyroid a mess plus 2 Chemo drugs messed up my stomach.  So I would recommend a bigger, more reputable Center.  My opinion.  Don't make My mistake, you'll pay in the long long.  Ears, eyes & sinues also affected!