Treatment choice.

Hi Everybody, I am new to this place it seems like there is a lot of caring people out there, with a lot of information. Well here's my dilemma almost a month ago I got diagnosed with SCC of the left Tonsil it is stage 2 3.7 cm. My ENT Oncologist said after blood work and CT scans and a PET scan that I have 2 choices for treatment. Fist I can have TORS (Transoral Robotic Surgery) to remove the mass and then a radical neck dissection 8 days later, followed by low dose radiation if needed, plus she told me about the side effects ect... and number two option is to have Radiation with Chemo and all the other good stuff that come with that option side effects ect... I am 46 with a very supportive Wife and Daughter, Family and Friends. I am a very happy go lucky person and upbeat about life, always positive but I really don't know which treatment to turn to. I know it's only me to make the decision but I was just looking for some feedback form all the wonderful people on this network.

BTW I had no symptoms, no lumps, nothing, just a tickle in the back of the throat for 12 months.

God Bless

Tonsil Dad.
«1

Comments

  • nwasen
    nwasen Member Posts: 235 Member
    One hell vs. another
    My cancer wasn't tonsil was stage 4 tongue with three lymph nodes....I had both options offered and my gut right then and there said No surgery. After I chose door #2 all the other docs said I made the right choice (!)...
    I am almost one year out (the 17th of this month was my last treatment of both radiation and chemo and after going to hell and back, I am doing just great....but I know each one of us is so very different.
    Maybe someone with your kind of cancer will give you more info important to your particular cancer....
    BTW. this isn't Gary is it?
    Peace, Nancy
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    If these two treatment choices give equal results
    ....which is essentially what you are being told, then I personally would go with the surgical option. The reason I say this is that the surgery will be less disabling than the radiation, and it leaves you a clean field to retreat (via radiation) if you should happen to get a recurrance. I'm a believer in preserving options when at all possible. Just my personal opinion...

    Welcome to the board.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Tonsil Cancer
    WOW, twelve months and only STGII, I'd say that's pretty lucky. I had a slight irritation in the back of my throat for less than three months and I was Dx'd as STGIII SCC HPV+ and a lump popped up as a secondary to the primary (right tonsil).

    I can only speak for myself and my treatment.

    I didn't have TORS, I had IMRT for radiation treatment.

    First, tonsils came out, nine weeks in three week cycles of chemo - Cisplatin, Taxotere and 5FU, that followed with seven weeks of concurretnt weekly chemo (carboplatin and 35 daily rads sessions).

    It was tough, but very doable for me (age was 55), that was January 2009, finished up June 2009. All scans have been clean and clear since.

    I can understand the desire for a less agressive approach. But can't really give you a recommendation of which is the better.

    I know that I'm glad they approached mine aggressively with the hopes of killing it and not having to go through it again.

    If you have doubts you can always get another opinion and way the most recommended from the professionals.

    Welcome to the forum...

    Here is an excellent thread that Sweetblood (a forum member) compiled for newbies;

    SuperThread

    Best,
    John
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    Skiffin16 said:

    Tonsil Cancer
    WOW, twelve months and only STGII, I'd say that's pretty lucky. I had a slight irritation in the back of my throat for less than three months and I was Dx'd as STGIII SCC HPV+ and a lump popped up as a secondary to the primary (right tonsil).

    I can only speak for myself and my treatment.

    I didn't have TORS, I had IMRT for radiation treatment.

    First, tonsils came out, nine weeks in three week cycles of chemo - Cisplatin, Taxotere and 5FU, that followed with seven weeks of concurretnt weekly chemo (carboplatin and 35 daily rads sessions).

    It was tough, but very doable for me (age was 55), that was January 2009, finished up June 2009. All scans have been clean and clear since.

    I can understand the desire for a less agressive approach. But can't really give you a recommendation of which is the better.

    I know that I'm glad they approached mine aggressively with the hopes of killing it and not having to go through it again.

    If you have doubts you can always get another opinion and way the most recommended from the professionals.

    Welcome to the forum...

    Here is an excellent thread that Sweetblood (a forum member) compiled for newbies;

    SuperThread

    Best,
    John

    Thank you
    Thank you all for the quick responses. After I speak with the Radiation Oncologist
    Dec 20 th, then I will have to decide as to what treatment I will go with. Oh by the way
    My ENT surgeon went on vacation for 3weeks so I guess I'll have to wait anyway.

    God bless and thanks to all.

    Tonsil Dad.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Tonsil Dad

    If it was me and knowing all I know about the side effects of Rad & Chemo treatment I would go with No#1 do the TORS and low dose of rad.

    Wishing you well and Welcome to CSN
    Hondo
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Hondo said:

    Hi Tonsil Dad

    If it was me and knowing all I know about the side effects of Rad & Chemo treatment I would go with No#1 do the TORS and low dose of rad.

    Wishing you well and Welcome to CSN
    Hondo

    Choices
    Pat's logic, were I in your shoes, seems good, as we all know the amount of rads one can get is limited due to collateral nerve, etc., damage. So, if you have the robot Op, followed by low-dose rads, perhaps that will leave open the option for more rads if it comes back in the near-future. And, I would ask my ENT about that.

    kcass
  • tommyodavey
    tommyodavey Member Posts: 726 Member

    Thank you
    Thank you all for the quick responses. After I speak with the Radiation Oncologist
    Dec 20 th, then I will have to decide as to what treatment I will go with. Oh by the way
    My ENT surgeon went on vacation for 3weeks so I guess I'll have to wait anyway.

    God bless and thanks to all.

    Tonsil Dad.

    Same Choice
    Hi Tonsil Dad,

    Mine isn't tonsil but something called Mucoepidermoid Carcinoma, a rare one where my surgeon wasn't sure about which treatment would be best. I was offered the exact same choice as you.

    What I did was ask HIM what HE would do if he had my condition. He didn't hesitate to say he'd have surgery followed by chemo/rad.

    Luckily my 4cm tumor had defined borders and he said he got all of it. It is slow growing and like you I will get low dose radiation. Mine was on the base of my tongue.

    My neck surgery will happen in the next few weeks. He agreed to let me wait due to it being a slow growing one. But to be honest, I want this cancer out of my neck ASAP. I now regret asking for the extra time in between. All I wanted was to enjoy Christmas because Thanksgiving wasn't so good.

    It's not an easy decision, you made a good choice asking the question here.

    I wish you the best recovery possible,

    Tommy
  • tommyodavey
    tommyodavey Member Posts: 726 Member

    Thank you
    Thank you all for the quick responses. After I speak with the Radiation Oncologist
    Dec 20 th, then I will have to decide as to what treatment I will go with. Oh by the way
    My ENT surgeon went on vacation for 3weeks so I guess I'll have to wait anyway.

    God bless and thanks to all.

    Tonsil Dad.

    A duplicate

    A duplicate
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    nwasen said:

    One hell vs. another
    My cancer wasn't tonsil was stage 4 tongue with three lymph nodes....I had both options offered and my gut right then and there said No surgery. After I chose door #2 all the other docs said I made the right choice (!)...
    I am almost one year out (the 17th of this month was my last treatment of both radiation and chemo and after going to hell and back, I am doing just great....but I know each one of us is so very different.
    Maybe someone with your kind of cancer will give you more info important to your particular cancer....
    BTW. this isn't Gary is it?
    Peace, Nancy

    sorry
    Hi Nancy,

    Sorry but I'm not Gary, just a new guy on the block with a messed up tonsil.

    God bless

    Tonsil Dad.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    Agree
    I agree with those who say surgery, after reviewing the two options you have I would choose the option without radiation. I say that because after having the max of radiation and years down the road you have a recurrence then radiation is not an option.

    good luck with your choice, and I agree both are hell options.

    john
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    Not to confuse you any further
    Tonsil Dad,

    I was given 3 options with my Base of Tongue cancer. 1- to have Chemo and Radiation without surgery. 2- Laposcopic surgery to remove the tumor on the base of the tongue, neck disection and then Radiation with possible Chemo. 3- Removal of part of my tongue, with neck disection, followed by Radiation and possible Chemo.

    I chose #2 as I wanted the Tumor/cancer out of me. The Surgeon was unable to get to the tumor with the Laposcopic procedure and I was rescheduled after our talk. He asked me what option I wanted and I still wanted the cancer out. So, I had part of my tongue removed, neck disection to removed the affected Lymphnodes followed by Radiation.

    I was originally told by my Radiation Oncologist that we can only be radiated once as the DNA changes in our tissue due to the radiation. After about year 3, he changed his words to say that my mouth and throat looked good and that if I needed to be radiated again, it was possible. I did not receive Chemo as the Surgeon and Radiation Oncologist wanted to keep Chemo as a back-up for me in case of reaccurance. I am nearly 7 years out of treatment.

    As mentioned above, coming here and seeking information so you can make an informed decision is a good thing.

    My Best to You no matter which avenue you take.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    Tonsil Dad
    Welcome and sorry that you find yourself here.

    I had base of tongue cancer stage 4. My options were essentially the same as you were given. A major difference being that I was not a candidate for TORS because of the location and size of my tumor. The surgery option was a pretty radical and invasive one, splitting the jawbone etc.

    My med team said they would normally recommend the surgery option but in my case they recommended the chemo/rads. We went with the chemo/rads and 16 months later, its all good. Clean scans, back to my normal life with very minimal side effects.

    If the TORS surgery was an option for me, I would have chosen that route. I believe there is a good chance of success with either choice. Cheers.

    Jimbo
  • jim and i
    jim and i Member Posts: 1,788 Member
    welcome
    Sorry you have the need to be here but happy you found this board. Great people here.

    My husband had BOT (Base of Tongue) that was agressive so they gave no option. He had 40 concurrent with chemo. If i were in your shoes I would first ask doctor, If it were you what would you do?" I would think that the surgery was the better choice for the same reason as others have stated.

    Whichever you choose, I am praying for positive outcomes.

    Blessings
    Debbie
  • Bigfuzzydoug
    Bigfuzzydoug Member Posts: 154
    Not enough information
    You state that you're T2 but what we really need to know is your M and N scores. Has the cancer metasticized and is it evident in your neck lymph nodes? What does the PET show? I assume the biopsy came back without clean margins. But was the mass well encapsulated?

    My first diagnosis was laryngeal SCC T3/N1/M1, but after a second and third review, discovered that it had NOT spread to the nodes and I was backed down to a T2/N0/M0. This dramatically altered my treatment plan. Here's my advice to you:

    1. Since you state that after 12 months it's only T2, it seems to be slow-growing (mine went from 5mm to 3.5cm in only 4 weeks!). So the first question is if you have time to get 2nd and/or 3rd opinions.

    2. Remember that doctors can only make recommendations based on the data they have in front of them. If you go for a 2nd and/or 3rd opinion, don't let it be based on the one pathology report you have now. Have new path tests done on your slides. Even consider cutting new slides from the blocks. If another doc wants to do another CT or PET - let them. Three opinions that agree based on a single path report doesn't mean it's the right decision. It just means that they came to the same conclusion base don the data they saw which happened to be the one and only data taken.

    3. If there's any hint, possibility or indication that it may be in your lymph nodes, radiation and possibly chemo is the way to go. While the TORS and the RND may sound like the way to go because you avoid the side-effects of radiation and chemo, unless the tumor is well encapsulated, M0, N0 and can be removed with clean margins - you may be doing yourself a disservice. My Wake Forest/Baptist U Oncologist/Otolaryngologist put it to me this way, "with cancer you don't remove minimal amounts of tissue. The surgical route means removing enough margin to be as confident as possible that all neoblastic cancer cells have been removed. If we don't get it all, there's a possibility that it'll come back and you're right back in the same place and we've done you a disservice. Since the larynx has a direct link to the lymph nodes in your neck, I would consider surgery if I was confident that it was a localized, well-encapsulated mass that I could remove with good clean margins."

    My second doc said a second laryngoscopy was all that was needed and I was thrilled! His tumor board later rebuked that. Because of the question about my nodes, radiation was the way to go for me.

    4. Radiation to the tonsil area can be as brutal as I had it to the larynx with the added potential to effect your saliva glands. It's not a fun thing to go through. But having it spread into your lymph nodes and going stage 4 is a helluva lot worse. Then you're into full chemo with no other choice.

    5. "Low dose radiation". I don't know exactly how this compares to standard IMRT radiation. If you're going to burn away the cancerous cells with radiation - then you're going to burn it away with radiation. The "dosage" I believe is usually the same, it's only the number of treatments they may be talking about, 28-45?

    6. Remember that doctors typically fall back into their "safe zone" of speciality. An Oncologist will recommend chemo. A Radiation Oncologist will recommend radiation. An ENT and Otalaryngologist Oncologist will recommend surgery. I had a report from the Johns Hopkins Tumor Board which was 3 votes for surgery (RND), 3 votes for radiation and 3 votes for chemotherapy. Guess which kind of doc voted for each treatment.

    I believe you need more info before you can make an INFORMED decision. Just make sure you have the time to get that info.

    I hope this helps.
  • ratface
    ratface Member Posts: 1,337 Member

    Not enough information
    You state that you're T2 but what we really need to know is your M and N scores. Has the cancer metasticized and is it evident in your neck lymph nodes? What does the PET show? I assume the biopsy came back without clean margins. But was the mass well encapsulated?

    My first diagnosis was laryngeal SCC T3/N1/M1, but after a second and third review, discovered that it had NOT spread to the nodes and I was backed down to a T2/N0/M0. This dramatically altered my treatment plan. Here's my advice to you:

    1. Since you state that after 12 months it's only T2, it seems to be slow-growing (mine went from 5mm to 3.5cm in only 4 weeks!). So the first question is if you have time to get 2nd and/or 3rd opinions.

    2. Remember that doctors can only make recommendations based on the data they have in front of them. If you go for a 2nd and/or 3rd opinion, don't let it be based on the one pathology report you have now. Have new path tests done on your slides. Even consider cutting new slides from the blocks. If another doc wants to do another CT or PET - let them. Three opinions that agree based on a single path report doesn't mean it's the right decision. It just means that they came to the same conclusion base don the data they saw which happened to be the one and only data taken.

    3. If there's any hint, possibility or indication that it may be in your lymph nodes, radiation and possibly chemo is the way to go. While the TORS and the RND may sound like the way to go because you avoid the side-effects of radiation and chemo, unless the tumor is well encapsulated, M0, N0 and can be removed with clean margins - you may be doing yourself a disservice. My Wake Forest/Baptist U Oncologist/Otolaryngologist put it to me this way, "with cancer you don't remove minimal amounts of tissue. The surgical route means removing enough margin to be as confident as possible that all neoblastic cancer cells have been removed. If we don't get it all, there's a possibility that it'll come back and you're right back in the same place and we've done you a disservice. Since the larynx has a direct link to the lymph nodes in your neck, I would consider surgery if I was confident that it was a localized, well-encapsulated mass that I could remove with good clean margins."

    My second doc said a second laryngoscopy was all that was needed and I was thrilled! His tumor board later rebuked that. Because of the question about my nodes, radiation was the way to go for me.

    4. Radiation to the tonsil area can be as brutal as I had it to the larynx with the added potential to effect your saliva glands. It's not a fun thing to go through. But having it spread into your lymph nodes and going stage 4 is a helluva lot worse. Then you're into full chemo with no other choice.

    5. "Low dose radiation". I don't know exactly how this compares to standard IMRT radiation. If you're going to burn away the cancerous cells with radiation - then you're going to burn it away with radiation. The "dosage" I believe is usually the same, it's only the number of treatments they may be talking about, 28-45?

    6. Remember that doctors typically fall back into their "safe zone" of speciality. An Oncologist will recommend chemo. A Radiation Oncologist will recommend radiation. An ENT and Otalaryngologist Oncologist will recommend surgery. I had a report from the Johns Hopkins Tumor Board which was 3 votes for surgery (RND), 3 votes for radiation and 3 votes for chemotherapy. Guess which kind of doc voted for each treatment.

    I believe you need more info before you can make an INFORMED decision. Just make sure you have the time to get that info.

    I hope this helps.

    Bigfuzzydoug makes interesting observations
    I tend to agree along his lines of reasoning. Your tumor is on the large side, just a little more, .3cm and it would escalate you to stage 3. The doctors are recommending a radical neck dissection which again is a Little more aggressive than a selective neck dissection. If they want to do a dissection they must be considering lymph node involvement which would make you a good candidate for radiation. My oncologist told me she classifies every head and neck patient as "MX" "presence of distant spread cannot be assessed, information not known." This is an appropriate statement in your case. Stand alone Surgery is used everyday to treat many kinds of cancer, stomach, ovaries, etc. where they can be sure to get clear margins. I think you only have to go as far as the TORS operation which will reveal much more information after they have been on the battlefield one time. You can adjust and alter the battle plan as it becomes necessary. It's wise to know your flanking options and thats what you are currently doing. Best regards in your plan of attack.
  • navy261991
    navy261991 Member Posts: 6
    Treatment Choice Reply
    Tonsil Dad - I was diagnosed with stage 3 SCCA tonsilar cancer in Dec 10. Had a 4 CM tumor on the right tonsil and a 3 CM and !.5 CM on the right lymph nodes. No further speading to any remote sites. I saw 3 ENT docs who all recommended radiation and concommitant chemo rather than surgery. Their rationale was that surgery would have side effects including swallowing and talking impacts as well as visible effects from the neck dissection. However, the most important point was they all said that the radiation and chemo treatment has the best results. Of course rad/chemo has its own side effects; mucositis, dry mouth, salivary imbalance, possible dental problems and more. However, the main goal is to cure the cancer and rad/chemo appears to provide the best results. On this forum there is another thread about a drug that can be taken during treatment that is aimed at reducing the effect on salivary glands. Recommend you ask about it if you elect to go with rad/chem.

    The other important factor for me in choosing treatment was who would perform it. My choice was between local doctors and hospitals in south Florida which were less than an hour away or a Comprehensive Cancer Center not as conveniently located. I chose Moffitt Cancer Center in Tampa which is over two hours away and meant that I would have to stay in Tampa during the week to get the Mon thru Fri radiation treatments. Of course this can cause you extra expenses for a place to stay; however most of the Comprehensive Cancer Centers have free lodging on their campus for the patient and their caregiver simply for the asking. My rationale for choosing Moffitt was the fact that they had more experience in my specific type of cancer than the local hospital alternatives. Moffitt treats 100's if not 1000's of head and neck patients a year while the local alternatives can't match that level of experience. For the IMRT radiation treatment it is particularly important to have a highly experienced team. Success depends not only on the radiation oncologist but also on his team of computer techicians and physicists that must accurately plan and implement the radiation treatment. In conclusion I'm very glad I chose Moffitt and believe it was a key factor in my successful results. Finished treatment in Mar 11; all clear for 9 months after 2 follow-up PET/CT scans.

    Good luck and let us know how it goes. Prayers are with you.
    Dave - navy261991
  • Crazymom
    Crazymom Member Posts: 339 Member
    Tonsildad
    I think you are lucky. I have almost the same thing as you...left tonsil 2.6 cm and 3 left lymph nodes. They are saying they want me to do Chemo 9 weeks and 6 weeks Radiation. They have not given me the final treatment options, but are not mentioning neck dissection. I will ask them at my next appointment.

    Good luck. Crazymom
  • nwasen
    nwasen Member Posts: 235 Member
    Not Gary!
    Hey good to meet you anyway. The strange thing was a guy in my town was just diagnosed with tonsil cancer and my ENT sent him to talk to me. I gave him this site and from what you posted, it sounded like you could be the guy from my hometown.
    You will find nothing but good people and a wealth of info here!
    We will all be pulling for you.
    Peace
    Nancy
  • nwasen
    nwasen Member Posts: 235 Member
    Not Gary!
    Hey good to meet you anyway. The strange thing was a guy in my town was just diagnosed with tonsil cancer and my ENT sent him to talk to me. I gave him this site and from what you posted, it sounded like you could be the guy from my hometown.
    You will find nothing but good people and a wealth of info here!
    We will all be pulling for you.
    Peace
    Nancy
  • par
    par Member Posts: 23
    Hondo said:

    Hi Tonsil Dad

    If it was me and knowing all I know about the side effects of Rad & Chemo treatment I would go with No#1 do the TORS and low dose of rad.

    Wishing you well and Welcome to CSN
    Hondo

    Hondo
    I agree with him about the side affects of Rad & Chemo.If I could go back I most likely would try something else first and then if needed do the Rads&Chemo.Just my opinion.