New Memeber with decision to make

Scottc33
Scottc33 Member Posts: 5
in Head and Neck Cancer #1

Hi.  I am a new member.  I have tonsil scc p16 HPV positive.  And a couple or three lymh nodes effected.  The primary was the tonsil and they took it out last week (It was 1.2cm)   Nothing BOT or anywhere else. (I think I am getting all these acronyms correct :).   

When they removed tonsil last week they confirmed it was the primary.  They also told me they had an "OK" margin of 1mm. The lymph node under it (is 2.4 cm) and a couple of its buddies are still there and effected of course and radiation and chemotherapy (cisplatin) will start next week after my mask is made tomorrow.  

They are telling me that I could be a candidate for a lower radiation treatment.  it is still in trial but would be the standard 60 "grey" for three weeks (15 treatments I guess) and then if the node has "oxygen" (determined by a special pet scan) in it they would then reduce that to 30 grey for the final 15 treatments.   Then at the end they take out the node and its buddies to prove it is negative.  (I need to find out what they do if it is still positive)  

A month ago I didn't even know this world existed and now I need to make a decision about going the standard route of 60 grey for the full 6 weeks or take the trial and lower dose.   Cisplatin will be 2 or 3 cycles (day 1 and 2 then day 22 and 23) during the radiation.  

The side effects from the standard route sound really tough, but it looks like it really is a cure and that's all I want!!  I want to be cured and will battle the side effects no matter how tough they are.   My wife is encouraging the lower dose but is very supportive of my decision either way.  

A month ago i never even heard of any of this stuff, now today I need to make a decision about how to get cured.  I'm super scared.  I want to choose the right path, and I just don't know.... 

Please help me get through this....

S 

 

 

 

 

 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    welcome

    Scottc33,

    Welcome to the H&N forum, sorry that you are here and sorry that the decisions are beginning.

    The less invasive course will most likely do the job or they would not offer it.  Most of us hoped to only do this once and get the cancer the first time.  Did the 3 lymph nodes test positive?  Clear margins are good.  Will they remove the 3 lymph nodes regardless of the rad choice?  If so, you are a surgery, rad & chemo, surgery member, that is different, but not unheard of.

    Go over it again with the doctor and stress the honesty factor and if you are still on the fence, get another opinion (it is not to late).

    Yes, treatments do test you and the side effects can be brutal at times, but you are talking to a room full of “been there done that” people.

    I do not know what to recommend, less rads sounds good at the dinner table, but no cancer sounds good all day.  It is tough, but believe me we all walked in your decision shoes in one way or another.

    Matt

  • MemphisTn
    MemphisTn Member Posts: 41
    #3
    My Advice...

    Get a second opinion, preferably from a larger institution about all options. One bit of information I was told when I began going through what you are now going through, was that the rad treatment is a one time deal. Once you recieve radiation in that area, if there is, God forbid, a local recurrence, radiation most likely will not be an option again. The cancer treatment realm, espcially RT is picking up steam as technology is finally starting to catch up in the traditionally 'light years behind' general clinics, so it is exciting to hear there are those still working to help fine tune the very wide approach used today. That said, if curative surgery is not an option going forward, and RT is the cure or preventative step, you must decide for yourself which path is for you. Exisiting standard protocols, even using the newer IMRT (Intensity Modulated Radiation Therapy) or the IGRT (Image Guided Radiation Therapy) are just that, standard default protocols, many with out regard to the speicific cancer being treated, based on years (or years old) trial and error. Thats actually not as scary as it sounds, its a good thing because our predecessors helped pave the way through their 'trials' to provide our current physicians and patients the options we have today. At a minimum I would ask them what the altenatives are should this approach fail to produce a cure. As a post RT patient of almost 2 weeks, I will say, hats off to anyone willing to contribute to RT trials, that technology needs a serious overhaul. My 2 cents.

     

    Much Love

    -Paul

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    edited September 2016 #4
    Second Opinion

    I agree, definitely get a second opinion.  My husband was diagnosed with laryngeal cancer and today I wish we had gotten a second opinion before any treatment started.  His tumor was large, Stage 3, but no spread anywhere.  He underwent radiation (and all the side effects) and 3 chemos of Cisplatin.  We were told he was NED but that wasn't true.  They did the PET/CT scan too soon after treatment ended.  I have always wondered if he had only had surgery would be still be here today.  We were also told that the radiation for head and neck cancer is the worse there is and that many don't finish it.  And yes it was and the after effects too. 

    As far as undergoing more radiation in the same area, yes you can.  He did.  When we found out he had a second primary at the cervical of his esophagus, the only thing offered was more radiation and chemo, surgery was ruled out.  We were told they would keep a good eye on him because the chances of his cartoid artery bursting was high, but thankfully he didn't have that problem.  We were told at the start that a second round of radiation in the same spot would be out of the question, wrong.

    Once they found out that the first treatment didn't get the tumor, we were referred to a head and neck specialist at Emory Winship Cancer Center in Atlanta.  This doctor was great and we were glad that we were referred to him.  The first one we were referred to was booked for 6 weeks and they told us that had an opening with this doctor that had just come up and we took it.  Glad we did and wish we had been referred to him in the first place.  Just make sure you are dealing with a specialist who has a lot of experience and a good bedside personality. 

    Wishing you peace and comfort.

  • Scottc33
    Scottc33 Member Posts: 5
    edited September 2016 #5
    MemphisTn said:

    My Advice...

    Get a second opinion, preferably from a larger institution about all options. One bit of information I was told when I began going through what you are now going through, was that the rad treatment is a one time deal. Once you recieve radiation in that area, if there is, God forbid, a local recurrence, radiation most likely will not be an option again. The cancer treatment realm, espcially RT is picking up steam as technology is finally starting to catch up in the traditionally 'light years behind' general clinics, so it is exciting to hear there are those still working to help fine tune the very wide approach used today. That said, if curative surgery is not an option going forward, and RT is the cure or preventative step, you must decide for yourself which path is for you. Exisiting standard protocols, even using the newer IMRT (Intensity Modulated Radiation Therapy) or the IGRT (Image Guided Radiation Therapy) are just that, standard default protocols, many with out regard to the speicific cancer being treated, based on years (or years old) trial and error. Thats actually not as scary as it sounds, its a good thing because our predecessors helped pave the way through their 'trials' to provide our current physicians and patients the options we have today. At a minimum I would ask them what the altenatives are should this approach fail to produce a cure. As a post RT patient of almost 2 weeks, I will say, hats off to anyone willing to contribute to RT trials, that technology needs a serious overhaul. My 2 cents.

     

    Much Love

    -Paul

    Thanks Paul.   I am being

    Thanks Paul.   I am being treated at Sloan Kettering here in the city.    They tell me they have big review boards that make these recommendations.   I will find out more tomorrow about ratiation after the treatment if the node is positive.   thanks for getting back so fast.  

  • Scottc33
    Scottc33 Member Posts: 5
    edited September 2016 #6
    Ladylacy said:

    Second Opinion

    I agree, definitely get a second opinion.  My husband was diagnosed with laryngeal cancer and today I wish we had gotten a second opinion before any treatment started.  His tumor was large, Stage 3, but no spread anywhere.  He underwent radiation (and all the side effects) and 3 chemos of Cisplatin.  We were told he was NED but that wasn't true.  They did the PET/CT scan too soon after treatment ended.  I have always wondered if he had only had surgery would be still be here today.  We were also told that the radiation for head and neck cancer is the worse there is and that many don't finish it.  And yes it was and the after effects too. 

    As far as undergoing more radiation in the same area, yes you can.  He did.  When we found out he had a second primary at the cervical of his esophagus, the only thing offered was more radiation and chemo, surgery was ruled out.  We were told they would keep a good eye on him because the chances of his cartoid artery bursting was high, but thankfully he didn't have that problem.  We were told at the start that a second round of radiation in the same spot would be out of the question, wrong.

    Once they found out that the first treatment didn't get the tumor, we were referred to a head and neck specialist at Emory Winship Cancer Center in Atlanta.  This doctor was great and we were glad that we were referred to him.  The first one we were referred to was booked for 6 weeks and they told us that had an opening with this doctor that had just come up and we took it.  Glad we did and wish we had been referred to him in the first place.  Just make sure you are dealing with a specialist who has a lot of experience and a good bedside personality. 

    Wishing you peace and comfort.

    Thanks.   They are telling me

    Thanks.   They are telling me they got it all and now we need to "clean up" the lumph nodes that are positive.  

  • Scottc33
    Scottc33 Member Posts: 5
    #7
    CivilMatt said:

    welcome

    Scottc33,

    Welcome to the H&N forum, sorry that you are here and sorry that the decisions are beginning.

    The less invasive course will most likely do the job or they would not offer it.  Most of us hoped to only do this once and get the cancer the first time.  Did the 3 lymph nodes test positive?  Clear margins are good.  Will they remove the 3 lymph nodes regardless of the rad choice?  If so, you are a surgery, rad & chemo, surgery member, that is different, but not unheard of.

    Go over it again with the doctor and stress the honesty factor and if you are still on the fence, get another opinion (it is not to late).

    Yes, treatments do test you and the side effects can be brutal at times, but you are talking to a room full of “been there done that” people.

    I do not know what to recommend, less rads sounds good at the dinner table, but no cancer sounds good all day.  It is tough, but believe me we all walked in your decision shoes in one way or another.

    Matt

    Thanks Matt.   I'm going to

    Thanks Matt.   I'm going to need all the support I can get.   I cant believe this is even happening.    The node did test positive.  The suroundimg ones did too but to a lesser extent.   Im being treated at Sloan In NYC.  They have a review board that will help make the reccomondation.  The standard care is 60 grey the full time and they do not pull out the node after the treatments.   But is suppose I could always ask for that to happen if I want.  The reason they take the node out for the 30 grey option is to "prove" the trial works.   

    I just don't know.    Trying to be positive and upbeat but it sure is hard.   Thanks for getting back to me so fast    

    S

     

     

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    edited September 2016 #8
    I'm kind of like Matt on this...

    Less rads sounds good at the dinner table, but no cancer ever again sounds good all day...all week....all year long. It's too bad you can't make a counter offer, and tell them you'll split the difference.  :)

     However, you're at Sloane Kettering...and that's a huge cancer center.  Since this new way of radiating is still in a trial phase, I imagine they'll be keeping a super close eye on you. PLUS they will be testing the nodes in the middle of treatment, and if they aren't where the Drs. want them to be, then your treatment will continue normally.  I think I'd go for it.  I understand your dilemma....I changed my mind just writing this post...from nay to yeah. 

    Ok...I started this post 15 minutes ago, to ponder some more....and I'm still thinking I'd go for it.  1) because they will be testing the nodes midway...so they will know if you need the super charged rads....2) because they're going to take the nodes out at the end of the treatment.

    p 

  • Scottc33
    Scottc33 Member Posts: 5
    edited September 2016 #9
    phrannie51 said:

    I'm kind of like Matt on this...

    Less rads sounds good at the dinner table, but no cancer ever again sounds good all day...all week....all year long. It's too bad you can't make a counter offer, and tell them you'll split the difference.  :)

     However, you're at Sloane Kettering...and that's a huge cancer center.  Since this new way of radiating is still in a trial phase, I imagine they'll be keeping a super close eye on you. PLUS they will be testing the nodes in the middle of treatment, and if they aren't where the Drs. want them to be, then your treatment will continue normally.  I think I'd go for it.  I understand your dilemma....I changed my mind just writing this post...from nay to yeah. 

    Ok...I started this post 15 minutes ago, to ponder some more....and I'm still thinking I'd go for it.  1) because they will be testing the nodes midway...so they will know if you need the super charged rads....2) because they're going to take the nodes out at the end of the treatment.

    p 

    Thanks phrannie....  i know.

    Thanks phrannie....  i know.   I have changed my mind 100 times a day.   I think the key will be if they let me add more rads at the end if the node is still positive after it is removed (three months after last rad).  How does the Cisplatin play into this.   They are thinking two rounds or three and have not determined yet.  But is more better? I.e. A greater chance of this HPV not returning?    

     

  • freetime
    freetime Member Posts: 4
    #10
    Sounds like you have this

    Sounds like you have this undercontrol, good job on getting help from doctor.

    Chemo is a nausiating process , my treatments of Cisplatin did help a lot. but it was hard to eat with metalic taste it gives.

    Radation kills bad cells and the good cells regrow , but slowly and dry mouth is the main problem because saliva glands can be damaged.

    i vote for less , after my 4o something visits i was cooked, my neck was very red and dry, in the end, i hade surgery which did remove cancer

    Please do your research, google your cancer doctor ect. but trust a doctor their the expert.

    With HPV, stress is part of the cause , stress can make you more sick , so relax, meditate, eat good build up your body power .

    Wish you the best , Relax let the pros handle it.

     

     

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