rads/chemo vs surgery

Robyn64
Robyn64 Member Posts: 124
in Head and Neck Cancer #1

Now I am very worried. I finished rads/chemo 9 wk ago. I was initially given a choice of rads/chemo or surgery. Drs though did advise me against surgery saying it could affect my speech. 

Ive now read a post on here where surgery is the better option, picking the other,  you end up with problems as a result of rad/chemo the rest of your life and a higher chance of it coming back ?

Im now really scared about this. 

I had bot cancer, hpv16, stage 1.

I have a pet scan on 5th nov and see dr on 11th for results, if cancer is gone.

Can anybody who has had treatment and has been long term free of cancer please reassure me ?

Im now terrified :-(

Robyn

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    The choices are different

    everywhere.  There are many variables that are taken into account when the cancer teams meet and discuss which way to go.  You were Stage I.....the gentleman who wrote the post is a Stage IV.....I'll venture to say that not all BOT cancers are in the exact same place....some surgeries may cause problems with speech, some may not.  Many people have had surgery, chemo, and rads.....it depends on the team, depends on the location of the cancer, depends on the Stage, depends on the health of the patient....everything gets taken into account before a plan is made.  HIS Drs. are making an assessment of HIS cancer.....Your Drs. made an assessment of YOUR cancer.  Relax.....breathe....and get back to healing.  Smile

    I didn't have surgery.....only chemo and radiation.  I was Stage III, NPC.  I'm over two years out of treatment...and going strong. 

    p  

  • Robyn64
    Robyn64 Member Posts: 124
    #3
    phrannie51 said:

    The choices are different

    everywhere.  There are many variables that are taken into account when the cancer teams meet and discuss which way to go.  You were Stage I.....the gentleman who wrote the post is a Stage IV.....I'll venture to say that not all BOT cancers are in the exact same place....some surgeries may cause problems with speech, some may not.  Many people have had surgery, chemo, and rads.....it depends on the team, depends on the location of the cancer, depends on the Stage, depends on the health of the patient....everything gets taken into account before a plan is made.  HIS Drs. are making an assessment of HIS cancer.....Your Drs. made an assessment of YOUR cancer.  Relax.....breathe....and get back to healing.  Smile

    I didn't have surgery.....only chemo and radiation.  I was Stage III, NPC.  I'm over two years out of treatment...and going strong. 

    p  

    thank you

    Thank you Phrannie. Dont know if you realise that I am Robyn Ferrari on your facebook.

    Thank you for explaining it better.

    Robyn

  • Jeff2159
    Jeff2159 Member Posts: 108
    #4
    phrannie51 said:

    The choices are different

    everywhere.  There are many variables that are taken into account when the cancer teams meet and discuss which way to go.  You were Stage I.....the gentleman who wrote the post is a Stage IV.....I'll venture to say that not all BOT cancers are in the exact same place....some surgeries may cause problems with speech, some may not.  Many people have had surgery, chemo, and rads.....it depends on the team, depends on the location of the cancer, depends on the Stage, depends on the health of the patient....everything gets taken into account before a plan is made.  HIS Drs. are making an assessment of HIS cancer.....Your Drs. made an assessment of YOUR cancer.  Relax.....breathe....and get back to healing.  Smile

    I didn't have surgery.....only chemo and radiation.  I was Stage III, NPC.  I'm over two years out of treatment...and going strong. 

    p  

    Phrannie is right

    Each situation will dictate the direction to go. I had 10 surguries over a period of 15 years before I finally had rads and chemo. My feeling is I wanted to save my bullets until I really needed them which I did. Could I have avoided many surguries with rads? Possibly but what side effects would occur? At stage 1, I'd elect surgury and just monitor it very carefully

    good luck

    jeff

  • wmc
    wmc Member Posts: 1,804
    #5
    I would have made the same choice you did.......

    Given your condition with BOT stage 1, and HPV16+ That is the way I would have gone. Now stage 3~4 is much differant.  Don't try to second guess what you did. 1st it didn't make much differance or doctors would not have given you that choice that way. HPV responds very well to RAD and chemo. There is no guarantee eithor way it won't come back, or will come back. I have read many that went your way and it never came back.

    You finishedTx 9 weeks ago..........RING THE BELL !!!! And Congrats.

    Bill

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #6
    wmc said:

    I would have made the same choice you did.......

    Given your condition with BOT stage 1, and HPV16+ That is the way I would have gone. Now stage 3~4 is much differant.  Don't try to second guess what you did. 1st it didn't make much differance or doctors would not have given you that choice that way. HPV responds very well to RAD and chemo. There is no guarantee eithor way it won't come back, or will come back. I have read many that went your way and it never came back.

    You finishedTx 9 weeks ago..........RING THE BELL !!!! And Congrats.

    Bill

    BOT

    Robyn,

     

    I too had BOT cancer, T2 N1 at stage III.  My tumor was pretty large so surgery was recommended followed by rads.  Had it been caught earlier I might have gotten away with rads only.  Trust me, you don't want surgery unless absolutely necessary.  Not knowing how much of my tongue the surgeon was going to take was a horrible thought.  When I woke up the first thing I did was wiggle my tongue a bit to see if it was still there.  My speech was a bit off for a few weeks but I adapted okay.

     

    Be grateful you didn't need it.  It's not a road you want to walk down.

     

    Tom

  • josh r.
    josh r. Member Posts: 264 Member
    #7
    Scared? Of courseyou are.

     

    Hi Robyn,

    Fear comes with the territory that we all find ourselves in as combatants of this terrible desease and we fight through it. Is it easy? No. Can we do it? Yes. I was very scared when I chose rad-chemo over surgery in July of 1991. On November 22nd of this year I will thank God, my family, brother and sister survivors and the medical team that got me thru these 23 years. Actually I thank them all every morning, noon and night. I just cellabrated my 69th birthday, I am blessed to be living a full life and do not plan to stop any time soon.

    Whatever you chose, you have to believe in it and give it all that you have as well as if not better than your medical team did and will continue to do. "Walk thru fear and beat the Beast!" All the best, josh r. So far, so good!

     

     

     

  • Robyn64
    Robyn64 Member Posts: 124
    #8
    josh r. said:

    Scared? Of courseyou are.

     

    Hi Robyn,

    Fear comes with the territory that we all find ourselves in as combatants of this terrible desease and we fight through it. Is it easy? No. Can we do it? Yes. I was very scared when I chose rad-chemo over surgery in July of 1991. On November 22nd of this year I will thank God, my family, brother and sister survivors and the medical team that got me thru these 23 years. Actually I thank them all every morning, noon and night. I just cellabrated my 69th birthday, I am blessed to be living a full life and do not plan to stop any time soon.

    Whatever you chose, you have to believe in it and give it all that you have as well as if not better than your medical team did and will continue to do. "Walk thru fear and beat the Beast!" All the best, josh r. So far, so good!

     

     

     

    Have to reply to you...

    Thank you so much Josh for your message, wow 23 years , I am gobsmacked. Your message and that of others have made me feel better.

     

    Thank you so much,

     

    Robyn

  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Hi Robyn

     

    Guess what we are all scared when it comes to treatment and we all worry if we made the right choice. Just remember what works for someone else might not work for you, listen to what your doctor is telling you about your treatment and what he believes is your best way to go. If you don’t like what is it telling you get a second opinion just make sure it is from one the major cancer institution and not some small city cancer rehab place. After you made your choice on treatment keep positive and keep focus on getting better and getting through your treatment to become a survivor.

    God Bless

    Tim Hondo

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #10
    My Two Cents

    Robyn,

    You were given the options and chose to go with what your doctors recommended. I was Stage IV, unknown primary, HPV+. Initially, surgery wasn't discussed. It was chemo/rads. I was uncomfortable with the doctors and the cancer center locally. I went for a 2nd opinion at Johns Hopkins and due to the fact that the tumors were huge (I had two 5+cm tumors in my neck), the team at Hopkins recommended surgery followed by radiation and chemo if needed. I felt much more comfortable with that recommendation, chose Hopkins as my cancer center and had full confidence in my team. 

    Yes, the side effects from the surgery are one of the most telling side effects of treatment but I'm here to talk about it.

    In your situation, being stage 1, the chemo/rads sounds like the way to go. If I was at a lesser stage and the cancer wasn't deemed as aggressive, I would have done the same thing. The bottom line is it can come back regardless and there's no greater chance either way. 

    Here's to meeting Mr. NED!

    Positive thoughts and prayers

    "T"

     

     

  • ratface
    ratface Member Posts: 1,337 Member
    #11
    fishmanpa said:

    My Two Cents

    Robyn,

    You were given the options and chose to go with what your doctors recommended. I was Stage IV, unknown primary, HPV+. Initially, surgery wasn't discussed. It was chemo/rads. I was uncomfortable with the doctors and the cancer center locally. I went for a 2nd opinion at Johns Hopkins and due to the fact that the tumors were huge (I had two 5+cm tumors in my neck), the team at Hopkins recommended surgery followed by radiation and chemo if needed. I felt much more comfortable with that recommendation, chose Hopkins as my cancer center and had full confidence in my team. 

    Yes, the side effects from the surgery are one of the most telling side effects of treatment but I'm here to talk about it.

    In your situation, being stage 1, the chemo/rads sounds like the way to go. If I was at a lesser stage and the cancer wasn't deemed as aggressive, I would have done the same thing. The bottom line is it can come back regardless and there's no greater chance either way. 

    Here's to meeting Mr. NED!

    Positive thoughts and prayers

    "T"

     

     

    I'm so sorry

    Robyn

    Please acceapt my heartfelt apology for upsetting you.  I was reponding to the poster as if I was in his very own shoes. My intention is never to hurt anyone here. I am so sorry and promise to do better!!! I regret causing you this pain. Please forgive me.

  • Guzzle
    Guzzle Member Posts: 710
    #12
    ratface said:

    I'm so sorry

    Robyn

    Please acceapt my heartfelt apology for upsetting you.  I was reponding to the poster as if I was in his very own shoes. My intention is never to hurt anyone here. I am so sorry and promise to do better!!! I regret causing you this pain. Please forgive me.

    Ratface

    Robyn, Ive got to know Rick and I know he wouldn't hurt a soul on purpose. Every case is slightly different - trust your doctors mate. G.

  • KB56
    KB56 Member Posts: 318 Member
    #13
    Rads/chemo vs surgey

    Robyn, I had tonsil cancer that spread to the lymph nodes on the right side of my neck, and was stage 4.    I had a tonsillectomy but no neck dissection.  the doctors thought it was too risky.  I had Erbitux and 34 radiation treatments 

     

    I'm almost 17 months out of treatment and everything clean so far.  I know 17 months isn't "long term" but so far so good!

     

    good luck with the scan. 

     

    Keith

  • Robyn64
    Robyn64 Member Posts: 124
    #14
    ratface said:

    I'm so sorry

    Robyn

    Please acceapt my heartfelt apology for upsetting you.  I was reponding to the poster as if I was in his very own shoes. My intention is never to hurt anyone here. I am so sorry and promise to do better!!! I regret causing you this pain. Please forgive me.

    please don't worry :-)

    Please don't worry about the post. I am not upset, got some explanations. I was pretty emotional at the time and felt I made a wrong choice. Please understand, all is good, there is nothing to forgive. 

    Thank you so much for your message, much appreciated,  I am more than ok :-)

    Thank you,

    Robyn :-)

     

     

     

     

     

     

  • Robyn64
    Robyn64 Member Posts: 124
    #15
    Guzzle said:

    Ratface

    Robyn, Ive got to know Rick and I know he wouldn't hurt a soul on purpose. Every case is slightly different - trust your doctors mate. G.

    you are right Guzzle

    Yes Guzzle, you are right, rat face is a good  bloke. He didn't do anything wrong, just read too much into a post, was very emotional at that point.

    Thank you Guzzle ,

    Robyn :-)

  • Robyn64
    Robyn64 Member Posts: 124
    #16
    Thank you everybody so much :-)

    Thank you everybody, My mind is at ease. Thank you so much for your replies.

    Especially Rat face xx

    Robyn

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