Where is the Answer???

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Ron Silver
Ron Silver Member Posts: 94
edited August 2018 in Head and Neck Cancer #1

The Trifecta-Surgery. Chemotherapy.  Radiation.

 Pick one, pick two, or all three.

 Identical disease-staging etc.  One treatment provider/board recommends one, two or three of the above, and another will recommend something different, most notably not surgery.

 Why surgery?  Delays the known SCC killer-radiation and chemo.  Why surgery?  Absolutely smashes your immune system. 

 I am sure that certain disease will mandate surgery.

 I am unable to locate anything (reputable research) that in anyway compares apples to apples to determine if surgery in addition to chemo/radiation has any effect WHATSOEVER on the outcome. 

 You see a surgeon, ya gotta get surgery.  You see on oncologist ya gotta have chemo.  You see a radiation oncologist, ya gotta have radiation.  Interesting.  The surgeon be like “surgery or die.”  The oncologist and radiation oncologist be like “chemo and radiation or die”  “Surgery…meh…if you want.” 

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Comments

  • DarcyS
    DarcyS Member Posts: 81 Member
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    Our 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.

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
    edited August 2018 #3
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    Good Question

    Dx with Base of Tongue cancer in summer of 2004, I went to University of Penna.  and I was given 3 options similar to what you mentioned above.

     1- Chemo and Radiation 2- Laparoscopic surgery followed by Radiation and possible Chemo 3- Major Surgery followed by Radiation and possible Chemo.

     My decision was to have the Tumor out of me and decided on the 2nd option. During surgery, the Surgeon was unable to get the tumor removed doing it Laparoscopically. I received a PEG Tube at that time. I met with the Surgeon again and I still wanted the Tumor out of me so I chose option 3.  I had part of my tongue removed, Radical Neck Dissection, Trach and drain tubes. 

     After the Surgery, met with Surgeon again and he told me that he and the Radiation Oncologist felt that all the cancer was removed and glad I had the neck Dissection since removing roughly 30 some Lymphnodes, they found others with cancer in them. Chemo was to be held back in the event of recurrence, which did not happen.

     Why Surgery? Maybe my thought pattern will seem too simple to many but it is how I felt at the time. 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. Yes, I lost some use of my tongue and swallowing abilities. I can still eat, but not everything I once did. I have trouble with some words/ sentences, but have learned to use others in place of them.

     The Surgery did lessen the possible treatment plan of Chemo in the mix. The down side of my surgery and radiation are as follows. I experienced loss of strength on my right side, which I did physical therapy to get most of it back. No saliva what so ever from the Radiation which I still deal with daily. Food limitations, speaking can be a problem with a constant dry mouth.

     Since we are given options, it is truly on the patient to weigh what will suit them best. I was lucky to have an outstanding cancer team in my corner. I also met with the Cancer Dentist at the Hospital who went thru all the possibilities of what might happen after Treatments with my teeth and jaw. I currently use the Fluoride daily.

     As mentioned here often, each of us reacts to the situation and treatments differently. There is no "One size fits all" here. I am sure that many patients have run across Doctors that say what you mentioned in your post. I was lucky since they did not say that, but I knew if I had to do something, I only wanted to do it once, so I chose what I did. I told the Surgeon and Radiation Oncologist to hit me with the kitchen sink if needed.

     One Survivor I know in another state went to 4 different Doctors and all 4 had different ways of treating his Tonsil cancer. He asked the last Surgeon why the difference. The Surgeon told him it is like a Baker making a cake, the ingredients are available to get the end result, and each Baker goes about it differently.

     My Best to You and Everyone Here

     

  • momall25ofu
    momall25ofu Member Posts: 81 Member
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    Ron, there is so much wisdom

    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.  

     

  • donfoo
    donfoo Member Posts: 1,771 Member
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    ditto - good question

    What you describe can occur when a second or third opionion is sought. Exact same details yet different facilities offer different recommendations. This happens fairly often. It has been an ongoing mystery to me over the years. What seems fairly common is certain facilities have favored protocols. Some seem to include surgery while others go with just chemo/rads. Most use tumor boards that are represented by surgeons, RO, and MO, as well as other specialities, so they all have input to the review. 

    Hosptials are populated with higly educated professionals, each having their own bias and preferences. As a group, there are those with more sway, credibility, experience, and influence in offering tumor board recommendations, each likely has its own culture and set of go-to tools and procedures. I'm certain there are multiple, equally effective ways to treat a given case. 

    Same goes with PEG. Some facilities recommend PEG straightaway while others prefer to defer and PEG only when it becomes clearly needed.

    My only suggestion is find a place you trust and take their recommendations or go find another one that agrees with your own ideas. It just makes very little sense to decide to direct treatment that is not recommended by your team.

  • Ron Silver
    Ron Silver Member Posts: 94
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    What was interesting is

    What was interesting is leaving it up to the patient to determine whether to have surgery without providing input as to whether having surgery will increase survivability.  My post had nothing whatsoever to do with shopping around until one finds a provider who agrees with you.  The lack of critical thinking here is evident.  Keep in mind that the insurance companies often dictate what treatment we receive or not receive, i.e., some will receive ONLY one CT and one PET post treatment.  None even hinted that insurance company mandates have anything to do with this issue.  Does it?

    Nevertheless, from the responses it appears these institutions have their own "culture" and bias to steer decisions where the research is inconclusive.  We as patients venture blindly. In my case I found after the fact that the hospital connected with medical school you WILL have surgery.  The other was "up to you...cannot say will lead to better outcome."  

     What brought this all to mind was a discussion with an oncologist about someone at the other hospital that received surgery radiation but no chemo and died.  I knew this person and he was told chemo was optional.  At the time this was happening I discussed this with my oncologist and it was clear he disagreed.  But he makes his money selling the chemo and dispensing it.  A little biased!  I get it.  Tonsil cancer.  Four hospitals-four different treatment plans.

  • ericyvonne
    ericyvonne Member Posts: 7
    edited August 2018 #7
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    They recommended my husband

    They recommended my husband to have surgery because they were not 100% sure where the tumor was (PET scan was sketchy outside of lymph nodes).  they did find tumor in left tonsil, so having this information gave them more precision on the radiation, which is better for target.

    Before surgery chemo was questionable but based on so many lymph nodes having cancer and positive margins on what they removed in tonsil, we are going forward with both chemo and proton radiation.

  • SuzJ
    SuzJ Member Posts: 427 Member
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    My ENT said..

    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!

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 383 Member
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    I started out headed to

    I started out headed to surgery, but the tumor board finally convinced the surgeon his chances were uncertain, but the oncs would nail it.  The problem was the effects and side-effects of chemo/rad, which are always unpleasant and usually permanent to some degree.  Radiation is what kills the most in chemo/rad, chemo stresses the tumor cells so they multiply faster which makes them easier to kill.  With surgery, you may/may not need additional treatment, and if you don't you're done and usually not dealing with radiation burns, and drymouth, and will I ever taste again.  Problem is, chemo/rad is more likely to get it all. 

    So the unsatisfying answer is it depends: Where the tumor is, the staging, the available staff, but especially the penetration into the nodes, which surgery has problem getting all of, but c/r hits when it may not even show up yet.  There are no cut and dried answers because every case is literally different, and in many cases there are grey areas as to certainty.   The standard of care is more directed at how the technique is performed, not which.

  • OKCnative
    OKCnative Member Posts: 326 Member
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    I had my first team tell me I

    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. 

  • rrmartins71
    rrmartins71 Member Posts: 10
    edited August 2018 #11
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    It is simple, and it isn’t

    I am 6 months out of TxN2M0 combined treatment (radiation and chemo). I must have read simply everything ever published on cancer. The decision surgery/chemo/rad is broadly based on the following questions - can it be safely removed? If it is well defined, and the risk of spreading more because of the surgery is low, surgery is always the best choice. Did it spread to blood or lymph vessels? If yes, chemo is necessary, albeit not very effective. Radiation will always be used if it is solid, and surgery is not an option.

     

    having said all that, you will come to learn how difficult it is to treat cancer. They are never alike, we still do not understand how it works, and each body is different. If you are expecting black and white answers, I’m sorry, you have been mislead to believe this is science. This is still art.

  • mehrdad357
    mehrdad357 Member Posts: 66
    edited August 2018 #12
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    Why I did not and don not have a tumor board in a teaching Hospi

    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
    Postal59 Member Posts: 8
    edited August 2018 #13
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    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.

  • mehrdad357
    mehrdad357 Member Posts: 66
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    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.

    I really feel for you and your husband; baffled

    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
    Postal59 Member Posts: 8
    edited August 2018 #15
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    I really feel for you and your husband; baffled

    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

     

     

    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!

  • mehrdad357
    mehrdad357 Member Posts: 66
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    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!

    Feel bad for you. Your husband!

    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

  • donfoo
    donfoo Member Posts: 1,771 Member
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    Why I did not and don not have a tumor board in a teaching Hospi

    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

     

    tumor board

    Certainly, you should ask about tumor board and ask to attend it. You will be comforted with so many years/decades of specialists that treat cancer day in and out. If not there but later, make sure to understand each opinion and the recommendation. They may have different insights and opinions but I believe the board comes together and agrees on one recommendation. That said, you decide how to proceed with any of the ideas offered or just walk away too, all your choice.

    Some here have entered trials using immunotherapies. Hopefully, they'll chime in exactly how one seeks out and qualifies for such programs.

  • MoreThan9Lives
    MoreThan9Lives Member Posts: 3
    edited October 2018 #18
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    For what it's worth...................

    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
    Ron Silver Member Posts: 94
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    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.

  • OKCnative
    OKCnative Member Posts: 326 Member
    edited October 2018 #20
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    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

    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.

  • Ron Silver
    Ron Silver Member Posts: 94
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    OKCnative said:

    To me it seems like you have

    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.

    Negativity? Are you kidding?

    Negativity? Are you kidding? I suspect the vast majority of the people who visit this board don't get multiple pet scans, the word tumor board is never heard out of their doctors mouths. A second opinion must be within the insurance network which is the same hospital. What is the purpose of that? There is no getting an opinion for a major cancer center across the country. The insurance doesn't pay for it. The purpose of my post is to show what I suspect many people are receiving for treatment so then when they read this board they can relate to it.  They should know that the treatment you describe may not be the norm. Most likely the treatment I describe is the norm. By the way I'm so happy for you that you had your team and your multiple pet scans and everything else you desired. Good for you. But the fact is, is important that people relate to what they read on this board. Is important for them to understand that everything you describe is not what cures the cancer.   The chemo, the radiation, and sometimes surgery is what cures the cancer.  Just because you don't have your tumor board, your 2nd and 3rd opinions it major cancer centers, the multiple pet scans, and all everything else you describe, does not mean that the treatment they are getting as inadequate. All they need to have is the correct amount of chemo, radiation, and sometimes surgery.  You get one pet scan to diagnose and 1 pet scan after treatment. 

    Finally I don't need luck. I don't have a negative attitude. I completed my treatment well over 5 years ago. I would describe the care I received is very competent and professional. However, there wasn't like anything you describe. And I suspect very many that visit this board cannot relate to what you refer to as your treatment.

     If you don't think medical professionals, as a whole, have a serious lack of communication skills with their patients, try reading some medical journals at discussed the efforts of medical schools to change the product coming on other schools.