Where is the Answer???

My husband received treatment at the University of Chicago.  His diagnosis: ssc of the piriform sinus stage 4 T1N2bM0.  They are a teaching hospital with a tumor board.  The board consists of all members of his team including the surgeon, hemotologist and radiation doctor.  They came up with his treatment plan together.  He had 6 weeks of chemotherapy and then 10 weeks of radiation with chemo(1 week inpatient, 1 week home) no surgery.  They said surgery would be plan b if needed.  It wasn't. 6 years later life is good with minimal side effects.  The team said they get the same results without surgery and that this treatment plan can preserve swallowing and organ function.  I don't know where you received your diagnosis and treatment plan. but a teaching hospital with a tumor board, I feel, considers all options not one doctor's specialty.  Hope this helped answer your question.

Ron, there is so much wisdom in what they've told you.  

Marine:  "If I choose to hit the tumor with chemo and radiation, will it really get to the Roots of the cancer 100%? By having the Surgery, the Tumor was removed with safe margins."    Plus, the added benefits of lowered rad/chemo doses after surgery.  

Darcy:  "teaching hospital with a tumor board.  The board consists of all members of his team including the surgeon, hemotologist and radiation doctor.  They came up with his treatment plan together."

We're at a teaching hospital as well and no one speciality doctor makes a decision.  The team makes RECOMMENDATIONS.  They recommened radiation first, my husband CHOSE surgery due to the aforementioned reason.  

That it was up to me. We could adopt a "wait and see" approach, or take the nodes to be sure (after chemo/rads)

I am not a patient person, I wanted it over and done with, and the axe hanging over my head, Gone.

So I had surgery. Would I do it all the same again? Yes, in a heartbeat!

I had my first team tell me I needed surgery. Second team said surgery should be a last option after rads and chemo. Went with the no surgery option. 

I am glad that I ran into this postig. I had BOT Stage 4b HPV+ cancer in August to November of 2016, and my BOT cancer has recurred as of 7/10/18 (Diagnosed in 8/2/18, confirmed 8/16/18) in form of glossopharyngeal sulcus site Stage 3. I never had any Tumor Board that I am aware of, nor was told tthat any tumor Board made recommendations on options for my treatment. In both cases 3 types of Oncologists and their support team (Nurses, Nutritionsts, etc..) made up a treatment team. I saw my MO, RO and SO indivioidually and the only time that I have been given an option was on 8/2/18 by my RO who stated I have 2 options for my recurrence: Surgery is recommended, Or chemo, which does not cure, but slows the progress of the cancer, but still makes it terminal.

I am being treated at Stanford Hospital, which is definitely a teaching hospital and it even has tumor boards. Was my initial cancer 4b, which the RO was very concerned during my treatment in 2016 may turn intpo 4c (Terminal), too early for a tumor board? Currently my RO who is an excellent and very caring dr., has told me my best option is surgery. I just hate neck diseesction, because the SO told me even though my cancer is "Very Easy", and I will be 100% free of cancer for the rest of my llife. When I asked about the muscle, salivary gland, nerve and vein. The SO said even though I will have the easiest (selective) neck dissection. Except the musle all others may have to be taken out. To me quality of life is as important as life itself. That is living and not be able to eat the remainder of foods that I can eat after my treatment in 2016 (Yes no more steaks or lamb chops for me). No one has told me a word about immunotherapy, which seems to have advanced significantly from 2016, when there were only clinical trials of it available. IN 2016 the same SO stated my 4b is not operable, so I got radiation and chemo instead.

I am not afraid of death, it is part of life, but death from cancer is at the very bottom of types of death that I want, if I had a choice. A massive heart attack (I also have heart disease) is the top choice, like my late father. He died about 45 minutes after the attack and hopefully he did not even experine a lot of pain (unconscious).

So given all the above, can some of the members who have made some intelligent comments explain whether or not I should ask my RO or SO yto get a tumor board together or is it their decision and not mine. I have a PPO insurance, which is very generous with cancer and especiallyy recurrence of it.

 Thanks to all

 Mehrdad

Postal59 said:

SEEMS THERE IS NO ONE RIGHT ANSWER

MY HUSBAND HAD A RADICAL NECK DISSECTION AFTER CHEMO AND RADIATION, WHICH SHRANK THE TUMOR ON THE LEFT SIDE OF HIS NECK BEFORE SURGERY TO ABOUT HALF ITS SIZE. SURGERY VERY COMPLICATED AS THE TUMOR ENCOMPASSED HIS MUSCLE, NERVES, AND WAS EXTREMELY CLOSE TO CAROTID ARTERY. 17 LYMPH NODES REMOVED BUT NO CANCER PRESENT IN THOSE. SURGERY WAS APRIL 30, 2018. HUSBAND IS A GO GETTER SO HE WAS BACK TO WORK IN ABOUT 3 WEEKS. DONT GET ME WRONG, HE WAS DEALING WITH A LOT OF PAIN BUT DID NOT WANT TO TAKE IT LYING DOWN (LITERALLY). PAIN GRADUALLY GOT WORSE AND PET SCAN IN JULY INDICATES CANCER IS BACK IN SAME AREA AS SURGERY. RADIATION DOC SAYS IS GROWING FAST. RECOMMENDS RADIATION OR DIE A SLOW PAINFUL DEATH. HUSBAND FEELS LIKE NOW HE SHOULD NOT HAVE HAD SURGERY. HOWEVER AFTER INITIAL RADIATION, RADIATION DOC SAID HE COULD NOT DO MORE RADIATION. NOW HE SEEMS TO BE EAGER TO DO IT..............NEVER HAD COMPLETE TRUST IN CANCER DOCTOR. YOU KIND OF START FEELING LIKE A PIECE OF MEAT IN A PRODUCTION LINE. TREATMENT....1000 BUCKS, TREATMENT........1000 BUCKS...AND ON AND ON. BUT WHAT CAN YOU DO???? GO LIKE SHEEP TO THE SLAUGHTER OR DIE QUICKLY IN AGONY??? ONLY THING THAT GETS US THROUGH IS OUR FAITH IN GOD.

Hello Potal59: Your post really shook me up, I fellt a lot of pain for your husband and yourself. May I ask what was his primary cancer and its stage. Was hebeing treated in a teaching hospital? You live and learn. I really want to help, so I will make a couple suggestions that maybe out of place. My RO told me that I have 2 options: Surgery (which he said is thre "CURE" for good) or chemo, which he said will slow the progress of cancerous cells, and I will have anywhere from 4 to 6 or 7 years to live, majority of which will be high quality of life. I have been seriously thinking about chemo option until yesterday a relative of mine  who is a highly regarded cardiologist, called me to see how I am doing. I discussed the recent visit with my RO & his 2 options to me. He stated I am ignorant about cancer, but I have heard through my medical journals that in the past 2 years there has been big progress in immunotherapy, and in few selected places they have had great success with it. He mentioned in particular Dana-Farber institute in Boston. I went on their website (https://www.dana-farber.org/) and they have posten the real story of a man called Barry Nelson who had stage 3b lung cancer. He was being treated in Boston in some hospital with cemo and radiation with no progress. He heard of Dana-Farber and went there and they started immunotheraopy only on him starting October 2013, and he is now just doing fine. You may want to look into immunotherapy for your husband.

Take care

Mehrdad

Postal59 said:

UNKNOWN PRIMARY

HI MEHRDAD, THEY NEVER FOUND PRIMARY SOURCE OF HIS NECK CANCER, JUST THAT IT IS METASTATIC SQUAMOUS CELL CARCINOMA. THEY NEVER TOLD US WHAT STAGE, JUST THAT THE BEST WAY TO GET RID OF IT WOULD BE TO HAVE IT SURGICALLY REMOVED. THE SURGEON TOLD US HE HAD TO CUT RIGHT UP TO THE BASE OF HIS SKULL AND ALTHOUGH EVERYTHING LOOKED GOOD, THE PATHOLOGY REPORT SHOWED POSITIVE MARGINS. MY HUSBAND STARTED OUT WITH COLON CANCER THAT MOVED TO HIS LUNGS AND WAS LABELED STAGE 4. IT GROWS MUCH SLOWER THAN THE NECK CANCER. HE JUST FINISHED RADIATION FOR A VERY SMALL BRAIN LESION, WHICH MAY HAVE ALSO COME FROM THE COLON CANCER, OR THE NECK CANCER. THEY DID NOT BIOPSY BUT JUST WENT AHEAD AND RADIATED IT IN 5 TREATMENTS. HOPEFULLY ON THE NEXT PET IT WILL NOT BE THERE. ALSO HE HAS PROSTATE CANCER BUT NOT DOING ANYTHING FOR THAT CAUSE NOT AS SERIOUS AS OTHER CANCERS. HE IS BEING TREATED AT A LOCAL SMALL CANCER CENTER ABOUT 40 MINUTES FROM HOME. HE DID NOT WANT TO HAVE TO DRIVE FAR FOR TREATMENTS AND HAD MIXED FEELINGS ABOUT THE TEACHING HOSPITALS. WE ARE ONLY A LITTLE OVER AN HOUR FROM DUKE UNIVERSITY AND UNC HOSPITALS, BOTH BEING NC TEACHING HOSPITALS. I TALKED TO HIM ABOUT GETTING SECOND OPINIONS, ETC, AND IF IT WERE UP TO ME, HE WOULD DO SO, BUT HE DOES NOT SEEM INTERESTED. I APPRECIATE YOUR CONCERN AND WISH YOU THE BEST!

Hi postal 51, after you told me that he chooses to be treated in a local cancer center (Is it at least a hospital?), when you are only a bit over 1 hour drive from Duke university hospital I thought why did he not go there to begin with. As you know the positive factor about teaching hospitals is that because threy have a lot of money and researchers, they have more expertize and resources than a small cancer center and certainly nore than a practicing Dr. If I may ask: is his age high that bothrs him to go to a place an hour away or his othrer cancers. It is also not good that he is not doing anything about his prostate cancer. Bu I really feel bad for yo. I am 69, but I go to a teaching hospital that is 30 miles away. when I go there for treatment, of course my wife drives. I just really wish the best for you and your husband.

Mehrdad

I was diagnosed on about April 15 with a stage 1 SCC of the left tonsil. CT and PET scans revealed no matastasis. Neither my ENT surgeon nor the radiation oncologist tried to push me in a

definite direction. Given the choice, I chose the tonsilectomy and neck dissection because I was told that there was "decent" chance that I could avoid both radiation and chemo. I was told that 

the surgery went very well. They got all of the tumor (along with 3 lymph nodes). On my first follow up after the surgery I was told that as well as the surgery went, the margins were

extremely small. Consequently my ENT, the radiation oncologist, AND the medical oncologist (chemo) were all VERY STRONGLY recommending that I have radiation and chemo to be as sure as

possible that the cancer wouldn't return. Needless to say I was VERY disappointed to hear that they had come to that conclusion. Like everyone else, I'd heard about (and read on this very web

site!) the absolute horror stories about the short AND long term side affects of radiation therapy. I completed my 7 weeks of radiation and chemo on September 19. So now I have bad throat   

pain upon swallowing, persistent dry/spitty mouth, mouth pain, tongue sores, blistered and severely chapped lips, scarring and scabs on my neck, facial/head hair fall-out, not to mention the

COMPLETE obliteration of my taste buds and appetite. I've read from quite a few folks that 4, 5, 6 years post treatment that their sense of taste still hasn't returned. I have great doctors and I

couldn't be more satisfied with my level of care. Still, if I knew post surgery (and pre radiation) what I know now............................................... 

Ron Silver said:

Reading some of the posts on this board baffle me. This talk about your "team" when I'm sure many of us don't have a "team." Highly educated professionals? I'm a highly educated professional.

I suspect, with a few exceptions, most of us on this board have had the typical cookie cutter medical treatment. You never heard the word tumor board come out of the mouth of any of your treatment providers. Depending on the hospital, you will have surgery, chemo, radiation, one or more of the above.

Many many of these hospitals will not have you seen by a speech therapist, nutritional expert, or even recommend that you see your dentist before treatment. I'm sure many will not even allow you to have a second pet scan after your treatment is completed.  No further x-rays, CT scans, or pet scans unless the doctor feels or sees signs of a reoccurrence. I suspect many on this board have learned more from reading information on this board and Google then they have ever been told by their medical providers. I have just as much respect for my local mechanic as I do any "highly educated" doctor. In fact 've encountered more incompetent medical professionals then I have encountered incompetent mechanics.

 All the above is regard less of whether you're at a "top" cancer center, teaching hospital, or your local hospital.  This is not meant to be a criticism.  It is what it is.  It is really common knowledge that medical professionals, specifically doctors, are extremely poor communicators with their patients.   The medicals schools have been  addressing this issue for the last 50 years. Still a long way to go.

To me it seems like you have a lot of negativity or anger issues. Or, maybe it's just how your posts come across to me.

Regardless, I couldn't disagree with you more on so many of your points.

Cancer is a pretty generic term and cancer research is still in many ways in it's infancy. That said, far more people survive and thrive than did just 10-20 years ago. So, to act like cancer centers and docs don't know what they are doing or that they are just money motivated is ludicrous.

You will absolutely get different opinions. There is also much evidence that there is not always a singular approach that will have a favorable outcome when it comes to cancer. People survive and thrive with just surgery and people survive and thrive with just chemo and rads. On the flip side, some people die even after getting all three.

As for me and my experience, not once was my initial treatment plan dictated by my insurance carrier. My doctors came up with a plan, explained it to me and then submitted it to my insurance and waited for an answer. I was told when I needed a PET scan and then reminded they would have to wait on approval from my insurance. My docs had no idea what my insurance would approve or not approve. They simply came up with a plan and we waited to see if insurance would pay. If they wouldn't I could appeal, pay privately or discuss an alternative treatment plan. But, it was never "insurance first." In my case, my insurance allows up to 4 PET scans a year before you have to fight for them. I also decided where I wanted procedures done. I most often went with 3rd party providers simply because the out of pocket was less.

Just because a treatment plan works, that doesn't make it "cookie cutter" in some negative way you are insinuating.

As for a 'team' - here you are wrong again, as many of us definitely had a team. I had an oncologist (who is also a surgeon), a radiologist, a patient navigator, several PA's, nurses, a thoracic surgeon, speech therapist, the techs who conducted my radiation, a nutritionist, and so on. Looks like a team to me and I met with all of them often. This doesn't even even include the tumor board.

Additionally, the cancer center I went to offered multiple types of treatment and I was given several options. I could have had surgery, but I (yes I) choose not to. I was encouraged to get a PEG tube but I (yep I again) choose not to. 

I'm one year out of treatment and I was back to 100% within weeks of my treatment ending. I couldn't have imagined going through this experience with the negative outlook you have. I'm naive about nothing and fired my first docs. I took control of my medical treatment and the first thing I did with that control is find a TEAM I trusted and then listen to their advice.

Did I have ups and downs? Yep. Did I not agree with some of the medical adivce I was given? Yep, but I also understood the foundation upon which that advice was provided. Did I personally change some of my treatment to suit me? Yes, again. And my TEAM was always very supportive and appreciated having an informed patient.

I've seen your type of negativity in other patience. They make themselves and those around them far more miserable than necessary. Good luck to you, you're gonna need it.