Recurrances

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Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #22
    Hondo said:

    Hi Kent

    You make a good point there; sometime there is no reoccurrence because cancer is still there. Doctors rely a lot on the PET scans to show them where the all cancer is located, but it is only a tool to help them in treating the cancer. But for now it is the best tool we have

    Thanks
    Hondo

    You are right
    You are right, PET Scan is only a tool. My cancer did not show up either time on the PET.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #23
    arndog64 said:

    how do I get to Sweets FB
    how do I get to Sweets FB wall to read the article?

    Arndog and Ratface
    Arndog- It's basically about radiation and Fanconi Anemia patients like me, and clearblue's wife. I was thinking of putting it on the superthread. I don't know if there are any FA lurkers on our site. It doesn't have anything to do with 'normal' HNC patients, just folks like me, with FA, which is a genetic blood disorder.

    Rick- Ever since I was diagnosed with FA, I was pretty much petrified I was going to either have complete bone marrow failure, or leukemia, or cancer..... I was diagnosed at about 24. I remember the doctor asking me why I was crying. He looked at me and said, "You could live to be fifty." like that was supposed to make me feel better? So almost half my life I have lived everyday feeling like I'm waiting for the other shoe to fall. It's been 20 years and I've not figured out how not to think about it every day, and how not to have that constant fear. Some days are better than others. Some days the fear is completely paralyzing, most days it's manageable. Since my cancer there have been more of the hard days, for sure. I wish I had the answers on how to get rid of that nagging fear and paranoia. I sure don't.
  • ratface
    ratface Member Posts: 1,337 Member
    #24
    sweetblood22 said:

    Arndog and Ratface
    Arndog- It's basically about radiation and Fanconi Anemia patients like me, and clearblue's wife. I was thinking of putting it on the superthread. I don't know if there are any FA lurkers on our site. It doesn't have anything to do with 'normal' HNC patients, just folks like me, with FA, which is a genetic blood disorder.

    Rick- Ever since I was diagnosed with FA, I was pretty much petrified I was going to either have complete bone marrow failure, or leukemia, or cancer..... I was diagnosed at about 24. I remember the doctor asking me why I was crying. He looked at me and said, "You could live to be fifty." like that was supposed to make me feel better? So almost half my life I have lived everyday feeling like I'm waiting for the other shoe to fall. It's been 20 years and I've not figured out how not to think about it every day, and how not to have that constant fear. Some days are better than others. Some days the fear is completely paralyzing, most days it's manageable. Since my cancer there have been more of the hard days, for sure. I wish I had the answers on how to get rid of that nagging fear and paranoia. I sure don't.

    Thanks Sweet!
    I feel like such a weenie sometimes. I'm sure the Drill Sergeant is going to throw the box of Kleenex at me and tell me to get over it. It's great to get validation that it's normal and doable. You would have to know my past background to see what an irony this is for me. I have a very difficult time being constantly afraid but it's suddenly just a little less frightening today.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #25
    ratface said:

    Thanks Sweet!
    I feel like such a weenie sometimes. I'm sure the Drill Sergeant is going to throw the box of Kleenex at me and tell me to get over it. It's great to get validation that it's normal and doable. You would have to know my past background to see what an irony this is for me. I have a very difficult time being constantly afraid but it's suddenly just a little less frightening today.

    Ur not a weenie...
    Lol. No irony here! Unfortunately I have ALWAYS been an anxiety laden individual. Even as a little kid. Guess some things never change...
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #26
    Glenna M said:

    Odd man....
    I guess I'm the odd man, I was 2 years post treatment when I found out about the recurrence. Still waiting to start treatment, hopefully the 20th of October.

    Praying for all of us that this vicious cycle ends now and we get back to the NED's.

    Stay strong,
    Glenna

    Abi-
    Abi, not ODD....

    HEHE,
    JG
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #27
    sweetblood22 said:

    Arndog and Ratface
    Arndog- It's basically about radiation and Fanconi Anemia patients like me, and clearblue's wife. I was thinking of putting it on the superthread. I don't know if there are any FA lurkers on our site. It doesn't have anything to do with 'normal' HNC patients, just folks like me, with FA, which is a genetic blood disorder.

    Rick- Ever since I was diagnosed with FA, I was pretty much petrified I was going to either have complete bone marrow failure, or leukemia, or cancer..... I was diagnosed at about 24. I remember the doctor asking me why I was crying. He looked at me and said, "You could live to be fifty." like that was supposed to make me feel better? So almost half my life I have lived everyday feeling like I'm waiting for the other shoe to fall. It's been 20 years and I've not figured out how not to think about it every day, and how not to have that constant fear. Some days are better than others. Some days the fear is completely paralyzing, most days it's manageable. Since my cancer there have been more of the hard days, for sure. I wish I had the answers on how to get rid of that nagging fear and paranoia. I sure don't.

    24
    I just know that had to be only like 2 or 3 years ago....:)

    Love ya girl,
    JG
  • mixleader
    mixleader Member Posts: 267 Member
    #28
    Yeah, I'm one of those 'R' guys. I'm currently doing chemo for stage 4 spread of a parotid cancer that surgery and rads was 'supposed' to kill. This truly sucks. Hopefully, something similar does not happen to any of you. In addition to a local cancer center, I am going to a large University soon to see if they can help in any way. In the meanwhile, I try to remain as upbeat as I can and I truly appreciate each and every day.

    Roger
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #29
    mixleader said:

    Yeah, I'm one of those 'R' guys. I'm currently doing chemo for stage 4 spread of a parotid cancer that surgery and rads was 'supposed' to kill. This truly sucks. Hopefully, something similar does not happen to any of you. In addition to a local cancer center, I am going to a large University soon to see if they can help in any way. In the meanwhile, I try to remain as upbeat as I can and I truly appreciate each and every day.

    Roger

    UpBeat
    You better stay UpBeat, and not BeatUp bro....save the beatin up for the cancer, you gonna kick azz....

    Stay positive, stay strong, Live Long.....

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #30
    Skiffin16 said:

    24
    I just know that had to be only like 2 or 3 years ago....:)

    Love ya girl,
    JG

    24
    I wish!
  • Pumakitty
    Pumakitty Member Posts: 652
    #31
    I agree with Kent
    I do think in many cases the cancer was never really gone. I have no doubt in my mind that Dad's cancer was ever gone. I think that is was just sitting there and growing very slowly and then it became obvious that it was back.

    The question I have does it make a difference in treatment if it is a reoccurance or if it was never gone. The oncologist said it did. When it is a reoccurance it does not respond as well to chemo then if it was not gone at all?

    Let me know what you have heard or think.

    Kathy
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #32
    Skiffin16 said:

    KENT - Agreed...and
    I should have mentioned that in my post.... In reading a lot of the posts on here as for early recurrence. I like you believe that they weren't actually cancer free when finishing treatment.

    Some of those may have been misdiagnosed or discounted during first PET's. The PET's that we all know tend to have residual from radiation specifically. Some of those may actually still be active cancer.

    My ENT also feels that the first and second years are milestones for success in treatment. Usually we hear five years as a standard when looking at forms and insurance. But based on his experiences in H&N Cancer, he feels three years with no recurrences is pretty much assured to be cancer free, (at least from the cancer that was treated).

    Also mentioned is always the chance of a totally new cancer popping up. Either from whatever, or a secondary from the first treatment such as radiation for instance.

    JG

    John-
    Good point about the secondary, which is a subject I don't remember much of any talk about on our forum. You read stories in the papers awhile back about warnings against too many Xrays in a lifetime, and then when we consider the amount of rads we've each been thru- HOLY COW, as we are all so far off the charts that it's incomprehensible how we can avoid a secondary, or two, down the road. We've had friends, here, who've developed new C in the lungs, and elsewhere, and it does lead one to wonder about the risk each of us lives with due to all the rads we've received. SWEET- if you can find any legitimate stories/research on "Secondary Risks" due to our previous C treatment, would be a good addition to the Superthread.

    I wonder if the 5-year thing isn't just for study purposes? Know I was told on my first ENT visit after the Biopsy came back positive that it'd be 5-years until I could believe I'm C-free, but I don't get the impression anymore. My Onco even suggested my last PS/CT back in April be my last, and that's only 2-year's scan! Wonder if the C med community has changed their opinion about how long it takes, or if that 5-year is just for studies that are done?

    kcass
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #33
    Pumakitty said:

    I agree with Kent
    I do think in many cases the cancer was never really gone. I have no doubt in my mind that Dad's cancer was ever gone. I think that is was just sitting there and growing very slowly and then it became obvious that it was back.

    The question I have does it make a difference in treatment if it is a reoccurance or if it was never gone. The oncologist said it did. When it is a reoccurance it does not respond as well to chemo then if it was not gone at all?

    Let me know what you have heard or think.

    Kathy

    Kathy
    I don't really have anything but a possible on why your Onco said that- the C has already been introduced to the Chemo, and may have built-up a resistance to it. The rad reason is easy- more rads to the same area likely will result in more colateral damage to nerves and tissues which make additional rads a no-go.

    Praying for your family.

    kcass
  • tesa
    tesa Member Posts: 123
    #34
    Kent Cass said:

    Kathy
    I don't really have anything but a possible on why your Onco said that- the C has already been introduced to the Chemo, and may have built-up a resistance to it. The rad reason is easy- more rads to the same area likely will result in more colateral damage to nerves and tissues which make additional rads a no-go.

    Praying for your family.

    kcass

    I'm convinced my mother's
    I'm convinced my mother's cancer wasn't totally removed the first time. I didn't know then but her surgery should have taken 9 hours to really get rid of the cancer. My mother's surgeon removed her tumor in an hour and a half.
    Wow, had I known then what I know now, things would have been so much better for mom.
    I've since learned to not just rely on what your doctor says. Ask a ton of questions and do your own research.
    I didn't do that the first time and we're paying the price.
    But I and my mother know that GOD will help us through this.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #35
    tesa said:

    I'm convinced my mother's
    I'm convinced my mother's cancer wasn't totally removed the first time. I didn't know then but her surgery should have taken 9 hours to really get rid of the cancer. My mother's surgeon removed her tumor in an hour and a half.
    Wow, had I known then what I know now, things would have been so much better for mom.
    I've since learned to not just rely on what your doctor says. Ask a ton of questions and do your own research.
    I didn't do that the first time and we're paying the price.
    But I and my mother know that GOD will help us through this.

    I agree with the idea put forth by John that a cancer showing up in the same area within 6 months of treatment is probably residual, meaning it was never totally eradicated by the treatment. Something showing 1 year or more later is probably recurrence.

    My guess would be that a residual cancer would be more difficult to treat successfully on the 2nd go around as it has already shown itself strong enough to survive the first onslaught of treatment. KCass mentioned the cancer building up a resistance to the chemo. Cancer tumors can and will mutate in order to survive. This in itself is a good argument to throw everything there is in the medical arsenal at the cancer during the initial treatment.

    People may have the exact same dx, but one's cancer may be more aggressive, resistant to the chemo or rads, or just plain stronger.

    Cheers,
    Jimbo

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