Recurrances

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 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.

sweetblood22 said:

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?

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

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 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 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

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

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 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!