Whips and jingles....

phrannie51
phrannie51 Member Posts: 4,716
in Head and Neck Cancer #1
I had my PET scan on Tuesday morning and the countdown has begun until my consult with my ENT on Monday afternoon. I want to know what type of C I have...yet, I'd love to back peddle about 4 years. I told my sister that if...when the Dr. starts talking...I cover my ears and start singing "lalalalalala"...to keep taking notes, don't pay any attention to me.

I talked to HR at work, so they have a heads up that I'll be taking short term disability, but until I get a real diagnosis, I can't make any plans as to where I might go, or if I will need to go anywhere else.

I've read this board back to 2009...every post, I swear. The one thing I can't find is...what was the time frame between surgery and starting the rads and chemo...I'm just trying to get a feel for it...I know it would vary with where the cancer is etc...

This up coming appointment is going to be the scariest day of my life...thus far...

Thank you to everyone who has kept coming back here long after treatment is over...I don't know what I'd be doing if this board, and those who participate weren't here.

p

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    Time Dragging
    Hope the time speeds up for you to make the time til Monday get here faster. This part of the cancer journey is very stressful - I just wanted to hurry up, and get the cancer gone NOW, and it just wasn't like that. No info here on time from surgery to radiation - I started with induction chemo, then had chemo radiation. For me, it was one month from my open biopsies with tonsillectomy to my induction chemo start date.

    Good to read that your sis will be with you at the meeting - I found extra ears served me well. Hang tough.
  • osmotar
    osmotar Member Posts: 1,006
    #3
    Hi Phrannie
    The only surgeries I had were; removal of rt tonsil ( primary site of cancer) by my ENT June 2011, placement of the power port I have in my chest in July 2011, other than that my chemo treatment started on Aug 8, I had cisplatin, taxotore, & a 5fu pump every 21 days that went until Oct, I started rads on Nov 1st, once a day for 7 1/2 weeks , plus each week I had a infusion of carboplatin. I go for my first follow-up PET scan this coming monday. I understand bout the being scared, it's the factor of the un-know, but listen to your body, your doctors. There are a lot of great folks here to support you, ask questions.

    Linda
  • Redwngs
    Redwngs Member Posts: 14
    #4
    time....
    Although I don't need surgery for my tongue cancer, from the time I was diagnosed to when when my treatments started was about a month and a half. In that time I had my teeth taken out, port put in, swallowing eval. and everything in between. Once everything starts you will be happy.

    Mike
  • Goalie
    Goalie Member Posts: 184
    #5
    timeframe
    I was early Aug ENT exam and biopsies, late Aug tonsillectomy (soonest possible because of vacations). Then a month or so to early Oct for start of rads and chemo (put off an extra week so I could play in a hockey tournament). Then nine weeks of rads and chemo until early Dec (Thanksgiving was a bust). Then healing up and scans and early Feb for neck dissection. Two weeks later tubes and stitches were out and it has been nothing but healing since.

    As for ST disability and all, I didn't really take this. Work has a disability insurance policy but its max was much less than my weekly salary (which is really not that much!) and so it only paid for about two days a week, basically my daily travel time for my tanning sessions. The other hours I worked as much as possible and they let me slide a bit when it was at its worst. This might not be possible in a big company with lots of policies and rules and regs.

    We are very glad to help you through this. Everyone was here for us in our darkest days. Doug
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Time in A Bottle....
    My time line (and treatment) was very much the exact same as Linda above....

    Dx - Jan 02, 2009
    Tonsils out - Jan 05, 2009
    Port - Jan 2009
    Chemo & Chemo/Rads - Feb - Jun 2009

    JG
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #7
    Hi Phrannie!
    I had surgery to remove a 3-cm lymph node from my neck in mid-January (2010). Diagnosis was metastisized SCC. Took till mid-February to have a second exploratory surgery to look for primary tumors and to cut out my tonsils and biopsy my base-of-tongue. PET-CT was finally approved by my insurance just about this time and lit up all the lymph nodes. I went out on short-term disability to recover from the tonsillectomy, and started my eight-week regime of Cisplatin chemo and concurrent radiation in early March. I finished up, with a few minor delays, in mid May. I remained on short-term disability until the end of July. So, I made it through my entire treatment and recovery process using my 12-week FMLA, a 12-week FMLA extension granted by my boss, and a few odd vacation and sick days thrown in at the start.

    I was stage 4 SCC, with lymph node involvement on both sides of my neck, so this wasn't a simple process. Not whining about it here, just letting you know that even a scary scary diagnosis is still very do-able and very survivable.

    Breathe. And, believe!

    Deb
  • staceya
    staceya Member Posts: 720
    #8
    D Lewis said:

    Hi Phrannie!
    I had surgery to remove a 3-cm lymph node from my neck in mid-January (2010). Diagnosis was metastisized SCC. Took till mid-February to have a second exploratory surgery to look for primary tumors and to cut out my tonsils and biopsy my base-of-tongue. PET-CT was finally approved by my insurance just about this time and lit up all the lymph nodes. I went out on short-term disability to recover from the tonsillectomy, and started my eight-week regime of Cisplatin chemo and concurrent radiation in early March. I finished up, with a few minor delays, in mid May. I remained on short-term disability until the end of July. So, I made it through my entire treatment and recovery process using my 12-week FMLA, a 12-week FMLA extension granted by my boss, and a few odd vacation and sick days thrown in at the start.

    I was stage 4 SCC, with lymph node involvement on both sides of my neck, so this wasn't a simple process. Not whining about it here, just letting you know that even a scary scary diagnosis is still very do-able and very survivable.

    Breathe. And, believe!

    Deb

    and I thought this was a new treatment option
    Surg 12/22/09 (The whole mass was removed and then bx, no lymph nodes involved, bx etc)
    Dx 12/24/09 Merry Christmas
    Picc 1/15?/10
    Rad 1/21/10-3/9/10

    Take care
    Stacey
  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    D Lewis said:

    Hi Phrannie!
    I had surgery to remove a 3-cm lymph node from my neck in mid-January (2010). Diagnosis was metastisized SCC. Took till mid-February to have a second exploratory surgery to look for primary tumors and to cut out my tonsils and biopsy my base-of-tongue. PET-CT was finally approved by my insurance just about this time and lit up all the lymph nodes. I went out on short-term disability to recover from the tonsillectomy, and started my eight-week regime of Cisplatin chemo and concurrent radiation in early March. I finished up, with a few minor delays, in mid May. I remained on short-term disability until the end of July. So, I made it through my entire treatment and recovery process using my 12-week FMLA, a 12-week FMLA extension granted by my boss, and a few odd vacation and sick days thrown in at the start.

    I was stage 4 SCC, with lymph node involvement on both sides of my neck, so this wasn't a simple process. Not whining about it here, just letting you know that even a scary scary diagnosis is still very do-able and very survivable.

    Breathe. And, believe!

    Deb

    Deb....you have a knack for reading
    my mind. Monday's appointment, no matter how much I want to know...is a dilemma, because it's equal to how much I don't want to know...you once again "heard" what I was saying...that even if it's worse than I'm hoping...and it's still DOABLE!! Your ability to read between the lines is so greatly appreciated!

    I'm good as far as time off goes...My job provides 6 months short-term disability, and I have nearly 1100 hours of leave to pump up the 2/3 pay rate...I've also have the 12 weeks FMLA if I need it...If by chance I can work between surgery and radiation, my short term disability starts all over again, buying more time...and all the while I keep accruing leave time, plus insurance is paid. I'm far better off than many folks I know, and I'm grateful for it.

    p

    PS...I do breathe...and I do believe...most of the time...the goolies get me when I allow myself some perverted kind of torture...my crystal ball has always sucked, yet...every once in a while I start staring into it.
  • robinleigh
    robinleigh Member Posts: 297
    #10
    phrannie51 said:

    Deb....you have a knack for reading
    my mind. Monday's appointment, no matter how much I want to know...is a dilemma, because it's equal to how much I don't want to know...you once again "heard" what I was saying...that even if it's worse than I'm hoping...and it's still DOABLE!! Your ability to read between the lines is so greatly appreciated!

    I'm good as far as time off goes...My job provides 6 months short-term disability, and I have nearly 1100 hours of leave to pump up the 2/3 pay rate...I've also have the 12 weeks FMLA if I need it...If by chance I can work between surgery and radiation, my short term disability starts all over again, buying more time...and all the while I keep accruing leave time, plus insurance is paid. I'm far better off than many folks I know, and I'm grateful for it.

    p

    PS...I do breathe...and I do believe...most of the time...the goolies get me when I allow myself some perverted kind of torture...my crystal ball has always sucked, yet...every once in a while I start staring into it.

    Time line
    Andy had his surgery and chemo/rads were supposed to start after two weeks to heal. He had complications that prolonged the process and didn't start until four weeks later. He really wanted to get it all going asap but the docs did not feel one to two weeks difference in time was crucial.
  • patricke
    patricke Member Posts: 570 Member
    #11
    Whips and...
    Hey phrannie, I started radiation treatment six weeks after surgery. It's time to strap on the armor, pick up the fiercesome weaponry of attitude, and get ready to fight and beat the beast. It's no walk in the park, so remember this: take it one day or one moment at a time, as repeatedly as needed; whatever the challenge of the moment, remind yourself, that "I can do this...," repeating as needed. You have lots of company with you on your journey.

    PATRICK
  • Greend
    Greend Member Posts: 678
    #12
    Attitude Attitude Attitude
    When you start always remember that all of us have faced this and the treatments and healing will begin. Knowing it will be beaten should be your mantra. Hang in there.


    denny - 16 years and counting
  • phrannie51
    phrannie51 Member Posts: 4,716
    #13
    Greend said:

    Attitude Attitude Attitude
    When you start always remember that all of us have faced this and the treatments and healing will begin. Knowing it will be beaten should be your mantra. Hang in there.


    denny - 16 years and counting

    Thanks Denny and Patrick....
    Now that the diagnosis is in, I'm finding my courage again. Waiting and waiting some more, is so draining, I could feel little pieces of ME chipping off on a daily basis. I know I have you folks...and I have my family...I'm not depressed...and at this moment, I'm not fearful...I just want to get this show on the road, put it in my rearview mirror.

    p

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