Hello everyone.
I hope everyone is doing good, and I wish everyone well.
I retired, I thought temporarily, about 8 months ago, I wanted to ease into my last decade of work, with a less stressful job.
Well, one thing led to another, and I didn't get my resume together, so I thought, let me just wait until after the holidays.
So in early January, when I thought I had a whole new year, with no distractions, being it was the winter in the Northeast, I could now start my new career. I was on the phone, and just was fidgeting with my neck, and I felt this lump.
At first I thought it had to be a swollen gland from a cold I had around Christmas, but it wasn't in the normal spot where I had swollen glands.
So I went to the doctor, and yes, he didn't think it was a swollen gland, too hard, and attached to the neck muscle.
I had it surgically removed, and it was biopsied as squamous cell carcinoma due to P16 HPV virus, in the left cervical lymph node.
To summarize from here, I had all the major testing to find the primary cancer, it has not been found.
PET CT scan, head and neck MRI, and a larangeal biopsy. All clear of tumors, the PET CT indicated a possibility of a carcinoma in the left tongue tonsils.
Since the lymph node biopsy, I first went to a chemo Oncologist, who referred me to an ENT, who then referred me to an ENT Oncologist, who is leading the case currently, and I also met with a radiation Oncologist, who works for a different medical group then the ENT Oncologist.
I want to have the least invasive radiation and chemo, I am concerned about organ damage, I have been a social drinker since I was a teenager, and know that I have fatty liver, as many Americans do.
My ENT Oncologist presented two options,
DaVinci Robotic removal of the tounge tonsils, then a surgery to remove nearby lymph nodes proactively, then the radiation followup, possibly with chemotherapy.
Or, no surgery, but a wider range of radiation, with stronger chemotherapy.
I am looking for advice from forum members who have been down a similar path to me, to suggest which option that I should choose, and if there is another option that I didn't present here.
Thank you for your concern, and your experienced advice.
CM57

I had transoral robotic surgery to find an occult tumor. They suspected the tonsils but it was actually in the vallecula and 2mm. I discovered my cancer in a similar way - swollen lymph node. Only one lymph node was detected.

This allowed my team to determine I could have radiation only treatment - 30 days for 60 Gy. I am 9 months post treatment and happy with the course I took.

I was treated at Stanford.

Please feel free to contact me by private message if you’d like more detailed info.

Welcome to OCF, Michael. Im very sorry you have a need for our group but I know we can help you with info and support.

I know it is not an easy decision to make on which is the best treatment option for you. The best source for medical advice is physicians. Please understand our site is made up of patients/survivors and caregivers. We do not have years of medical school, clinical patient hands on experience, detailed medical history and of course the patient in front of us. Even if we could see the patient, read their lab reports, see the scans we still would not be qualified to give specific medical advice on what path is best for you. Trying to council anyone over the internet by non-medical professionals would very irresponsible, which is the last thing we would do. If you are conflicted, how about getting another opinion? Some members have gotten multiple opinions from many facilities before making their final choice. If you are in NY then you have some top comprehensive cancer centers (CCC's) that all would be an excellent option. They all use a team based approach so all the specialists work together to create your own individual treatment plan so everyone is on the same page. They are also the most experienced in treating patients with complex cases and have the best outcomes. Off the top of my head, Sloan Kettering, MD Anderson, Johns Hopkins are some of the countries top CCCs.

One thing that is in your favor is HPV+ cancer patients usually have a better outcome than those patients who had their cancer caused by smoking and drinking. Reading and learning about your illness can help you to make your treatment decisions and also a strong advocate for yourself. We have thousands of pages here and on our main OCF site to browse. On our online patient support forum you will find more personal stories and support for patients and caregivers. The main OCF site is made up of scientifically proven medical info about many different subjects relating to OC, treatments, tests, etc. To go to the main OCF site, clink on the words OCF Website on the bottom left of any page. Ive included the link below as well so you can read page after page of info that can better explain all things about OC, HPV+, treatments, recovery, etc.

Main OCF Site, Understanding

Thanks Stef and Christine.
Yes, I do realize that no one here would be giving me clinical decisions, but thoughts on their own experiences.
I have been working with doctors from 3 different companies, yet they still talk and collaborate as a team, which I find to be very assuring.
Thanks again for your replies, so far, I find this forum to be a great place for information and support.

Hi Christine, I just read your profile summary, Bless your will and fight for your life. I will certainly keep you in mind when things get scary or difficult, and know you fought through such difficult procedures.
I see you had cheek cancer twice. Did that happen to be the parotid gland?
My PET/CT showed probable malignancy in the left lingual tonsil, but slight activity in the left parotid gland. But my ENT Oncologist said that in my profile, that would be extremely rare, and he is almost certain it's hiding in just the lingual tonsil.
Another thing I wanted to expound on, but didn't want to make my initial post longer then it already was, is the second opinion situation.
After my primary doctor, and then a general surgeon, coordinated the removal of my SCC lymph node, I went on seeing one general ENT, and 3 Oncologist specialists.
The first Oncologist, worked at Columbia Presbyterian in NYC for many years, before moving to our satellite Columbia Presbyterian hospital near me. He is mostly an induction Oncologist, so he advised me to find an ENT to see where the primary site may be.
I used an ENT who is in a different group, that my family uses for most conditions, a very large group in our county.
He is the first doctor to discuss Robotic surgery. He didn't specialize in that, so he referred me to an independent ENT Oncologist who trained under the inventors of DaVinci.
After consulting with him, I met with a Radiation Oncologist who works at my satellite Columbia Presbyterian, and has worked at Sloan Kettering in NYC.
So the reason that I list all of this, is that I am being second guessed by some relatives and friends, for not going to Sloan Kettering for treatment and /or more opinions.
Both Sloan and Columbia Presbyterian in NYC are CCC's.
I told the people second guessing me, all this, but because I can drive 4 miles away for treatment, instead of the stressful and expensive trips down to NYC, they are still questioning me. I think that I have had 4 great opinions in general on my prognosis which is very good, and three of them more in depth on the robotic surgery and radiation.
Also, there have been no conflicts, every doctor along the way seems to have the same opinions, prognosis and options.
My thought is, save my energy, and be less stressed, going into the next 3 months, which will be very rigorous with the robotic surgery, radiation and possibly chemo.
But, I value any thoughts on my decision, that I have had more then enough opinions, from highly experienced doctors, some of which have worked at CCC's.

My cancer was not in the parotid gland. The first two times I have cancer, the tumor was in the middle of my left cheek. The first time I had OC, I surprisingly had 2 completely separate tumors. The second tumor was hidden behind my top left molar. Boy this feels like it was a million years ago when I went thru that. Time flies!!! Its coming up on my 11 year anniversary of my original diagnosis. I am very fortunate to have survived even though everything was against me. All I thought about during everything I went thru was its 100% my own fault and my children could be left without anyone. That was a direct result from the actions of their only parent. Its not that I was depressed, I was realistic and understood the situation which was I caused my own illness.

First, Im a neutral party who will be here to help you thru regardless of which facility you select. Most patients fare better at CCCs and at OCF, we advise going to a CCC if its an option. No matter what you select there will always be someone who has a friend of a friend, a co-workers second cousin, etc... same thing goes with some "new age" secret treatment only available at an exclusive medical clinic in the rain forest or some small 3rd world country. They will tout their unproven treatment as if it was a government conspiracy keeping it from patients. Anyone who has had cancer or been a caregiver has heard these types of things from well meaning friends and relatives. Basically, yes! it really does make a difference where you are treated! Scientific studies have shown patients treated at CCC's have a better survival rate at the 5 year post treatment (tx) mark. Of course, realistically not all patients have a CCC as an option, traveling when going thru cancer treatments is very hard on the patient. Bottom line, patients need to find the very best medical care that works for them and go with it. Whenever well meaning friends and relatives start preaching about this or that its best to just say thank you and keep going without getting into it. No matter what choice you make about your cancer, those same well meaning (but seriously unknowing) friends and relatives will add their two cents without anyone asking for their input.

Your post mentioned alot of facilities where doctors had worked at CCC's. Im sure they all are great physicians. But its is not the same as currently working at a CCC with a team based approach. Consulting briefly with other specialists at other treatment facilities is far different than the team based approach of all specialists being on the same page discussing each individual case during a tumor board meeting (patients can attend too). Im not aware of Columbia Presbyterian being a CCC or maybe they are affiliated with one? There is a difference in being treated at a CCC or somewhere that is just affiliated with one. You are very fortunate to have one of the countries top CCCs basically in your back yard. The top 2 are MD Anderson and Sloan Kettering. It cant hurt to check them out. Going to doctors who at one time worked at Sloan Kettering is not at all like going directly to the facility for treatments. Try to think of it a different way... if you only have one shot to completely eliminate the cancer should you go somewhere that treats say 100 OC patients a month or a place that treats 10? OC can be a fast moving and deadly disease. If you have not yet been to Sloan Kettering why not go for a second (or third) opinion? If you have seen doctors from different facilities who specialize in all different things, thats different than a second opinion. Going to Sloan Kettering would mean all doctors meeting together to discus your case. OC is not one of the top cancers that most people hear about. That means not all doctors have enough experience with it or can keep up with the latest findings. This is especially important when it comes to complex cases such as yours with no primary found. At the end of this post is a link to USNews best US hospitals and the NCI list of CCCs and cancer centers (CCs are different than CCCs).

I completely understand the difference it makes in which facility you go to if you are solely basing your decision on location. I cant imagine having to drive with that traffic. I was in NY for 10 days last fall and saw first hand what real traffic and gridlocks are like in a gigantic city. Theres no way I would drive in NYC, especially if I was going thru rads!!! I dont know if any of the doctors you have seen have mentioned to you that you may not be able to drive during all of your treatments and during the first month of so of your recovery. One tip that can help is when someone asks what they can do to help you, ask if they could help drive you for your treatments. Start making your contact list of everyone who has offered you their assistance. Theres all kinds of small things that can turn into a huge help to someone going thru rads. Most OC patients do not drive themselves. I have only seen a handful of patients able to drive during their treatments and recovery. Most patients have pain and so are on strong pain meds, they do not feel well, are nauseous, many have limited range of motion to turn their heads easily to name a few reasons why many can't drive themselves. Some patients are ok during the first 2 or 3 weeks after that, driving is unsafe and beyond their capabilities. Of course this is not every OC patient but I would estimate 95% arent able to drive themselves the entire time. When I went thru rads, I drove only about 2 weeks into my treatments then I had to concede and stop driving. It was about a month after I finished rads before I started driving again. The American Cancer Society has a volunteer driver program manned by cancer survivors and caregivers. Ive used it a couple times and volunteer once in a while taking cancer patients to their appointments. After you select your treatment facility and doctors, you can call the ACS (24/7/365) and get the ball rolling if you think you may use the program. It takes a few weeks to set everything up to be part of the driver program.

Selecting a facility sure isnt easy! I bet you never thought choosing could be so complicated or important. At least you live where you have options, not all patients are so fortunate. At the end of the day its 100% your decision, you are the one who has to live with it regardless if it turns out to be the right or wrong choice. Whatever you decide is up to you, nobody else. All of us go thru this and we all understand how difficult it can be. With just being diagnosed, so much is happening that it can easily become overwhelming. With so many options it makes it even harder to make decisions. Patients often feel the weight of the world is on their shoulders with so many unknowns and decisions. Try your best to stay positive!!!

I hope I havent made this any more difficult than it already is. Best wishes with whatever you decide.


US News top hospitals list...(NY area shown)

NCI Comprehensive Cancer Center list

Thanks Christine for the detailed reply.
I guess I was confusing CCC, for Cancer Centers of Excellence.
Some medical insurance programs, have a separate rider to their coverage, that covers all cancer treatments at 100% if you receive all your treatments from a documented Cancer Center of Excellence. I think there are 33 in the county, and two on this list in NYC, Sloan and Columbia Presbyterian.

https://cmcnetworkmanagementtool.uh...on=&designation=COE&lobCode=COMM

I learned about this from a relative who had brain cancer, and has the rider, and used Sloan for all their treatments.
I don't have this rider, but my insurance has been very good so far in this journey.
I just looked on the internet, it looks like the acronym for these facilities, is COE's, as opposed to CCC's.
And I think the programs are run by a separate company from your health care insurer. The one my relative uses, is run by Cancer Resource Services (CRS).
I'm not sure if all of these programs are run by CRS.
I checked twice with my insurer, I don't have this rider.
But I don't think these riders are widely known, so it may be a suggestion for anyone going through treatments, to call their insurer to see if they have this rider. Someone with a high out of pocket plan, could potentially save thousands of dollars if they had a rider similar to my relative using a COE.
I'll keep in mind to possibly go to NYC at some point.
I am really conflicted on this, I am nervous that almost two months have passed without finding, or treating the primary cancer. I don't want to do anything to delay my TORS on 3/23/18.
But I see you have a good point with the group collaboration at a large CCC.
I still need my surgical clearance from my primary doctor, and I couldn't get an appointment immediately, I just got the surgery date several days ago.
It's amazing how complicated it is to move things along, everything from the tests, doctors, hospital availability, insurance approvals, etc. are all interrelated.

One other update, Columbia University Center, listed on the NCI link, is at Columbia Presbyterian in NYC.
That's on the upper west side of Manhattan by the George Washington Bridge.
The full name is :
Herbert Irving Comprehensive Cancer Center (HICCC) at New York Presbyterian/Columbia University Irving Medical Center

http://cancer.columbia.edu/locations