Recurrances

Is it my imagination or are we seeing a growth (no pun intended) of people with recurrances? My wish is all of these get well and the surge stops now.

Maybe its just my imagination....I worry about you guys.

Denny

PS Not you John (Skiffen), Shelly worries enough for the te=wo of us. :>)
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Comments

  • sweetblood22
    sweetblood22 Member Posts: 3,228
    No, it's not just you. John
    No, it's not just you. John and I were talking about that too. Honestly, it scares me half to death. I agree. I pray everyone gets well and the surge stops now!
  • staceya
    staceya Member Posts: 720

    No, it's not just you. John
    No, it's not just you. John and I were talking about that too. Honestly, it scares me half to death. I agree. I pray everyone gets well and the surge stops now!

    I have noticed this too. It
    I have noticed this too. It is scary. I think about it way too much, both worrying about myself and all of us. I send out prayers for healing.
    Stacey
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    staceya said:

    I have noticed this too. It
    I have noticed this too. It is scary. I think about it way too much, both worrying about myself and all of us. I send out prayers for healing.
    Stacey

    And reading that research
    And reading that research paper really didn't help me any last night. Honestly, it freaked me out.
  • Pam M
    Pam M Member Posts: 2,196
    On Your Team
    I was all for it when we seemed to have a couple rounds of "good news for everybody". Now that it seems we're seeing a lot of recurrances, I'm unsettled.
  • Pam M
    Pam M Member Posts: 2,196

    And reading that research
    And reading that research paper really didn't help me any last night. Honestly, it freaked me out.

    What research paper?

    What research paper?
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Pam M said:

    What research paper?

    What research paper?

    Pam
    Oh sorry, my FB - CSN lines are blurring. It's the one I shared last night to my Facebook about radiation and FA patients. I was thinking I may have been included in the study. I don't think I am though. You can look at my wall, it's on there.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Worry...
    Who me, LOL.... it seems to come and go in spurts.

    Several months ago I remember there being a lot of recurrence also. It had poor IrishGypsy (Charles) upset at the time.

    Then all of a sudden around April or May we had a lot of NED's...now recurrence again.

    It's always scary, especially hearing of others that had a very similar Dx and treament as yourself.

    I'm not sure, but it seems like a lot of the recurrence happenings are from those within six months or so post treatment, or that had something else going on.

    Thoughts & Prayers for each of you....
    John
  • KTeacher
    KTeacher Member Posts: 1,103
    Don't mean to worry y'all.
    Don't mean to worry y'all. I am one of those fighting a second time. I don't like to read too much of the tech stuff Sweet, it seems to make me sleepless, and I like my sleep. I must say having found this site and all of you has made this fight a little easier. My husband is a wonderful caregiver but sometimes doesn't get it (usually about the food!). My sister is also a wonderful suppport, mostly telephone (she seems to have surgery at the same time as I do!). Best B and B close to Stanford for my visits! My sister surfs the net and her newspaper and always finds wonderful information for me. I am 4 weeks into radiation, 2 more weeks to go. Fight, fight, fight, win, win, win! I SO want to meet NED!
  • jim and i
    jim and i Member Posts: 1,788 Member
    I was thinking the same
    I was thinking the same thing over the last few days. I believe John is right, seems to be within 6 months of treatment. Since Jim is only one month out from treatment this really concerns me. We do not want to be in this cycle, we want to be in the NED cycle. LOL

    We know that no matter what we are in God's hands. However, still hard to stop thinking about it.

    Praying all of us have nothing but NED reports.

    Blessings,
    Debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    Denny
    I believe you are right and that is why it is so importance for us long timer to continue to stay here on CSN. WE all need each other, the once just starting and the ones going through treatment a second time. I hope and pray that no one will ever have to do like me a third time, but even if that do life is still good three times later.

    Hondo
  • Glenna M
    Glenna M Member Posts: 1,576
    Hondo said:

    Denny
    I believe you are right and that is why it is so importance for us long timer to continue to stay here on CSN. WE all need each other, the once just starting and the ones going through treatment a second time. I hope and pray that no one will ever have to do like me a third time, but even if that do life is still good three times later.

    Hondo

    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
  • nwasen
    nwasen Member Posts: 235 Member
    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

    I asked my chief oncologist my last visit to the James about time frame for cancer popping it's ugly self up again. He said usually within the first year but sometimes as far as two years out.
    Gal I met from here; her's was two years out. BUT she had had surgery and no chemo or radiation. Said her's was just stage one.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    nwasen said:

    I asked my chief oncologist my last visit to the James about time frame for cancer popping it's ugly self up again. He said usually within the first year but sometimes as far as two years out.
    Gal I met from here; her's was two years out. BUT she had had surgery and no chemo or radiation. Said her's was just stage one.

    Maybe not
    JOHN- I must note that there is a difference between reoccurrence and the C never having been totally eliminated, as is likely the case with Kathy's Dad and my Cousin, for instance. If we're only talking about 6-months to a year, and it's again big enough to show on the PS/CT- figures the body was never totally cleaned of the C with tx. And, this is why the Pet Scans continue years after treatment is done. Just because we go thru the rigorous tx, and nothing is big enough to show on the first "baseline" PS/CT 3-months out, the possibility that the C was never totally gotten rid of is what might be in play- at least with some cases. Seems to me one has to be "clean" with the 1-year PS/CT before it can really be said they got it all, as it just might not be big enough to show on the baseline scan. That's my take. And, again, this logic falls back on the Drs for a misdiagnosis on the severity of the C before tx starts.

    kcass
  • ac
    ac Member Posts: 88 Member
    New primaries
    I hate to add to this. But there is also an increased risk of new primaries for past cancer survivors. I had colorectal cancer in 2008 and just got diagnosed with nasopharyngeal cancer a couple of months ago. Hope everyone stays well though.
  • Hondo
    Hondo Member Posts: 6,636 Member
    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

    Hi Glenna
    I still go to the lung forum and read up on how you are doing, and still keep you in my prayers day and night.

    God bless
    Hondo
  • Glenna M
    Glenna M Member Posts: 1,576
    Hondo said:

    Hi Glenna
    I still go to the lung forum and read up on how you are doing, and still keep you in my prayers day and night.

    God bless
    Hondo

    Hondo
    Thank you, I really appreciate your prayers.

    Stay well,
    Glenna
  • Hondo
    Hondo Member Posts: 6,636 Member
    Kent Cass said:

    Maybe not
    JOHN- I must note that there is a difference between reoccurrence and the C never having been totally eliminated, as is likely the case with Kathy's Dad and my Cousin, for instance. If we're only talking about 6-months to a year, and it's again big enough to show on the PS/CT- figures the body was never totally cleaned of the C with tx. And, this is why the Pet Scans continue years after treatment is done. Just because we go thru the rigorous tx, and nothing is big enough to show on the first "baseline" PS/CT 3-months out, the possibility that the C was never totally gotten rid of is what might be in play- at least with some cases. Seems to me one has to be "clean" with the 1-year PS/CT before it can really be said they got it all, as it just might not be big enough to show on the baseline scan. That's my take. And, again, this logic falls back on the Drs for a misdiagnosis on the severity of the C before tx starts.

    kcass

    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
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    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
  • ratface
    ratface Member Posts: 1,337 Member
    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

    So I'm not going crazy?
    What a relief to hear a conversation about recurrence. It's on my mind constantly and all my major life decisions have to at least consider the possibility. Since my scans have never been NED and have in fact uncovered suspicious spots on my lungs I have had a difficult time coping mentally with the constant fear. I have utilized professional counseling and anti-depressants but that only goes so far as sooner or later you just have to come to terms with the possibility. I have felt a sense of weakness and brittleness of life that is only attributable to having been afflicted by this horrible disease. Every one of you who opened this thread and started reading knows that fear and everyone of us has to make a conscious decision to continue coming to this site. I'm scared every damn day but I come here because you folks are the only ones who truly understand. My family and friends can empathize but this is really about walking a mile in my shoes over thin ice with crocodiles and unspeakable monsters waiting beneath. A sincere thanks to the long term posters here as your presence is invaluable. A sincere thanks to anyone who continues to post after recurrence because we need to know how to walk on that ice!
  • arndog64
    arndog64 Member Posts: 537
    ratface said:

    So I'm not going crazy?
    What a relief to hear a conversation about recurrence. It's on my mind constantly and all my major life decisions have to at least consider the possibility. Since my scans have never been NED and have in fact uncovered suspicious spots on my lungs I have had a difficult time coping mentally with the constant fear. I have utilized professional counseling and anti-depressants but that only goes so far as sooner or later you just have to come to terms with the possibility. I have felt a sense of weakness and brittleness of life that is only attributable to having been afflicted by this horrible disease. Every one of you who opened this thread and started reading knows that fear and everyone of us has to make a conscious decision to continue coming to this site. I'm scared every damn day but I come here because you folks are the only ones who truly understand. My family and friends can empathize but this is really about walking a mile in my shoes over thin ice with crocodiles and unspeakable monsters waiting beneath. A sincere thanks to the long term posters here as your presence is invaluable. A sincere thanks to anyone who continues to post after recurrence because we need to know how to walk on that ice!

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