I'm back ... and so is my cancer

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Some of you (well, one or two, maybe) may have wondered where I've been recently. In mid-February I went for what was supposed to be my final PET scan, two years and four months after treatment ended. My docs thought it would be clean. It wasn't.

Now I have a tumor in my lung; it's spread to two lymph nodes in my chest. There is a big blessing in the middle of this bad news, though. My docs at Johns Hopkins logically assumed that my tonsil cancer had metastasized and spread to the lung, which happens in about 10 percent of similar cases. But the Hopkins tumor board concluded that the two were unrelated. That makes for a much better prognosis.

And one truly weird thing: My tonsil cancer was positive for HPV-16, and the lung tumor is HPV-18. (One can't morph into the other, which was one fact that led to the tumor board's conclusion.) The docs told me that HPV-positive lung tumors are rare to begin with, and when they are seen they're almost exclusively found in black patients. I'm as white as white can be. Go figure.

My treatment begins March 21. It'll either be five weeks of rads followed by surgery, or seven weeks of rads with no surgery. They won't know which I'll be getting until the five weeks is up.

One bright spot: They say the side effects and after-effects of this treatment will be nowhere near as brutal as what I went through in 2008.

I guess I'll have to start hanging out over in the lung cancer forum. I'm sure I have a lot to learn.

And, BTW, prayers and positive thoughts would be greatly appreciated.

--Jim in Delaware
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Comments

  • Glenna M
    Glenna M Member Posts: 1,576
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    Oh no!!!
    Jim, I am so sorry to hear the bad news but very happy to hear that it is an entirely new cancer and not mets. I am awaiting my next CT in May as they have found a new lesion in my lung. Good news is the other tumor is nowhere to be found. If it is something I am also praying that it's new and not mets from the laryngeal cancer.

    I post on both the lung and head and neck forums also so unfortunately I will probably be seeing you more often. Again Jim, so sorry this is happening to you but you seem to be positive which, as you know, will help you tremendously. If there is anything I can do to help just ask, I didn't have surgery but did have chemo and Stereotactic Radiosurgery instead of the traditional radiation treatments. Wish you were a candidate for this type of treatment as you only require 4 or 5 treatments instead of 30 or 35.

    You will be in my prayers daily.

    Stay strong,
    Glenna
  • ratface
    ratface Member Posts: 1,337 Member
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    Glenna M said:

    Oh no!!!
    Jim, I am so sorry to hear the bad news but very happy to hear that it is an entirely new cancer and not mets. I am awaiting my next CT in May as they have found a new lesion in my lung. Good news is the other tumor is nowhere to be found. If it is something I am also praying that it's new and not mets from the laryngeal cancer.

    I post on both the lung and head and neck forums also so unfortunately I will probably be seeing you more often. Again Jim, so sorry this is happening to you but you seem to be positive which, as you know, will help you tremendously. If there is anything I can do to help just ask, I didn't have surgery but did have chemo and Stereotactic Radiosurgery instead of the traditional radiation treatments. Wish you were a candidate for this type of treatment as you only require 4 or 5 treatments instead of 30 or 35.

    You will be in my prayers daily.

    Stay strong,
    Glenna

    upbeat about the prognosis
    Hi Jim

    I've always enjoyed your viewpoint on this board so don't be a stranger. I am among those with spots on my lungs which they are watching so your post really peaked my interest. As you Know Glenna has already been through it. "Soccorfreaks" has had a similar situation as you describe. Seems this stuff is never really over but glad to hear about an upbeat prognosis. So educate me, why is it worse if the lung cancer is a spread of the original squamous cell? I'm guessing because that would mean a poor response to previous chemo?
  • miccmill
    miccmill Member Posts: 248
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    ratface said:

    upbeat about the prognosis
    Hi Jim

    I've always enjoyed your viewpoint on this board so don't be a stranger. I am among those with spots on my lungs which they are watching so your post really peaked my interest. As you Know Glenna has already been through it. "Soccorfreaks" has had a similar situation as you describe. Seems this stuff is never really over but glad to hear about an upbeat prognosis. So educate me, why is it worse if the lung cancer is a spread of the original squamous cell? I'm guessing because that would mean a poor response to previous chemo?

    Sorry
    Oh Jim, that had to be a shock. I'm sorry.
    It sounds like they have a plan though.

    Prayers and postive thoughts coming your way.

    Take care
    Lisa
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Sent
    Jim,

    Positive thoughts and Prayers sent out for you.

    My Best to You and Everyone Here
  • Hal61
    Hal61 Member Posts: 655
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    Jim, sorry to hear
    Jim, I know you stuck with this board and offered support for a couple of years after your diagnosis. I've also seen you offer help on other cancer boards on the net. You have reasons to be hopeful, and I did like hearing that the recovery will be nothing compared to initial treatment in '08. Keep on reporting. You're in my thoughts.

    best, Hal
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hal61 said:

    Jim, sorry to hear
    Jim, I know you stuck with this board and offered support for a couple of years after your diagnosis. I've also seen you offer help on other cancer boards on the net. You have reasons to be hopeful, and I did like hearing that the recovery will be nothing compared to initial treatment in '08. Keep on reporting. You're in my thoughts.

    best, Hal

    Hi Jim
    Sorry to hear the news, you are a strong and positive guy so I know you will come out of this with no problems. I too failed my PET this week when it lit up an area that was clean just 6 months ago.

    Take care keep strong and my prayers are always with you my friend.
    Hondo
  • mixleader
    mixleader Member Posts: 267 Member
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    Not Again
    Hi, Jim. I also am sorry to hear of the new cancer. I know that can be very hard to take as mine also came back just a few months after surgery/rads. However, it sounds like your docs have a plan and it sounds like you have the attitude to fight this thing off again. As I have been told time after time....fight, fight, fight and never give up. Best wishes and prayers headed your way.

    Roger
  • Greg53
    Greg53 Member Posts: 849
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    Hal61 said:

    Jim, sorry to hear
    Jim, I know you stuck with this board and offered support for a couple of years after your diagnosis. I've also seen you offer help on other cancer boards on the net. You have reasons to be hopeful, and I did like hearing that the recovery will be nothing compared to initial treatment in '08. Keep on reporting. You're in my thoughts.

    best, Hal

    Positive thoughts sent your way
    Jim,

    Damn it dude, sorry to hear this. Good to hear that this will be an easier go-round for recovery. Plus it sounds like you're looking on the positive side of things, which can only help. Definitely thinking about you and sending positive thoughts your way!

    Greg
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    Jim
    Gotta ask you to keep us updated as much as possible on how you're doing. Very sorry to hear of this development. Hoping that HPV tumors are a lot easier to knock-out than tumors that are genuine lung cancer. And it would seem you have provided a great lesson, albeit a lesson neither you nor us care much for, as to the necessity of the PS/CT for a number of years after our treatment is done. Dang this lesson, to be sure. Still, I do thank you for teaching it to me, Jim. Hoping and Praying the scan found it early enough to just be a little bump in the road for you. Mean that bigtime, Jim. You have helped me with my mouth and teeth issues- you've made a difference to the Positive for me, as I'm sure you also have to others here.

    Again, please keep us updated as you roll-up the old shirtsleeves, find that mean kinda grin, crack your knuckles, and then beat the X!#/ out of this new C. And, Jim-

    Believe

    kcass
  • Scambuster
    Scambuster Member Posts: 973
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    Jim
    Man, this is a nasty blow and a big shock. I am so sorry to hear you have to go through yet another bout with the beast. As you say the news is mixed and the outcomes look positive. Keep us posted in your magnificent laconic manner which is appreciated by all here.

    Scam
  • Irishgypsie
    Irishgypsie Member Posts: 333
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    Kent Cass said:

    Jim
    Gotta ask you to keep us updated as much as possible on how you're doing. Very sorry to hear of this development. Hoping that HPV tumors are a lot easier to knock-out than tumors that are genuine lung cancer. And it would seem you have provided a great lesson, albeit a lesson neither you nor us care much for, as to the necessity of the PS/CT for a number of years after our treatment is done. Dang this lesson, to be sure. Still, I do thank you for teaching it to me, Jim. Hoping and Praying the scan found it early enough to just be a little bump in the road for you. Mean that bigtime, Jim. You have helped me with my mouth and teeth issues- you've made a difference to the Positive for me, as I'm sure you also have to others here.

    Again, please keep us updated as you roll-up the old shirtsleeves, find that mean kinda grin, crack your knuckles, and then beat the X!#/ out of this new C. And, Jim-

    Believe

    kcass

    So Sorry!
    Hey, Jim I'm so sorry about the bad news. :( You are in my thoughts and prayers.
    Charles
  • rush1958
    rush1958 Member Posts: 223 Member
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    So Sorry
    Jim,

    I'm so sorry you have to go through another round of treatment. You sound like you've got a pretty positive outlook and that is key to winning the battle.

    My thoughts and prayers are headed your way. Stay strong.

    Rush
  • staceya
    staceya Member Posts: 720
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    rush1958 said:

    So Sorry
    Jim,

    I'm so sorry you have to go through another round of treatment. You sound like you've got a pretty positive outlook and that is key to winning the battle.

    My thoughts and prayers are headed your way. Stay strong.

    Rush

    My thoughts and prayers are
    My thoughts and prayers are with you!
    You have been a source a strength and inspiration to me,
    Stacey
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    staceya said:

    My thoughts and prayers are
    My thoughts and prayers are with you!
    You have been a source a strength and inspiration to me,
    Stacey

    I'm in total shock! I'm sorry to read this.
    I can't even imagine how you are feeling. Please know that you are in my prayers. Please keep us updated when you can. You have been much help to me in the past and I really appreciate that.

    Hugs-

    Dawn
  • wifeforlife
    wifeforlife Member Posts: 189
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    I'm in total shock! I'm sorry to read this.
    I can't even imagine how you are feeling. Please know that you are in my prayers. Please keep us updated when you can. You have been much help to me in the past and I really appreciate that.

    Hugs-

    Dawn

    Prayers
    As with the rest I have always enjoyed your posts. Thoughts and Prayers comign yor way.
  • Carolinagal
    Carolinagal Member Posts: 91
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    I was so stunned to read
    I was so stunned to read your post. You are definately in my thoughts and prayers.
  • donna340
    donna340 Member Posts: 72
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    Sending prayers
    sorry to here the news. Sending lots of prayer your way.
  • josh r.
    josh r. Member Posts: 264 Member
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    round two
    Jim,
    You have a proven track record as a winner. We are here to support you in your next victory. Keep us informed. Josh r.
  • Misty2011
    Misty2011 Member Posts: 15
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    Lots and lots of prayers
    Lots and lots of prayers sent your way! God bless!
  • charles55
    charles55 Member Posts: 87
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    twice is two times too many
    Jim, I am so sorry you have to face this again. You have been such a support for others along this path. You know the routine, and you know a lot more now than the first time you went through treatment. You did beat the tonsil cancer, and there is no reason to think you can't beat the lung cancer, too, since you caught it so very early. You are definitely in my prayers. charles.