First let me say I am so greatfull for finding this newsgroup.
Second let me introduce myself I am Frank I am 43 years old and just recently retired from the US Navy after 26 years,
during my departing physical the Navy found nothing wrong with me how ever 3 months later during a physical from the V A
the discovered a Tumor in my left lower lobe of course a CT Scan was ordered and it confirmed the tumor. My pulminary
Dr. stated if this is cancer you are at a stage one and a simlple operation will be a quick fix. A needle biopsy was
attempted but I ended up with a defalted lung and after a week stay in the hospital a Petscan was ordered
the Petscan showed activity and an additional tumor in my right center lobe I was transfered to the care of a thorasic
Surgeon who told me that surgery is not an option you are a stage four. When ask what , how did I get to stage four in a
mater of weeks he said the cancer is in your blood and started to spread. When asked how do we know this is cancer he
said well the left lung from the biopsy when told the biopsy failed he said I wil put this in front of the tumor board
and see what they say. Well 45 minutes after I arrive home the same day the Dr. cals me up and says I am sorry we have
no biopsy no tissue sample so I cant stage you or diagnose you. Two days latter on monday he calls and says I would
like for you to come in on wednesday, wednesday he tells me I want to admit you to the hospital on friday and cut your
left lower lobe out six weeks later I want to do a second surgery on your right center lobe then we will wait and hope
nothing else shows up. "what" When asked about a needle biopsy he said no one at the Naval hospital would do one on me
because they lacked the skill. When ask about giving a refferal to someplace else he said theres a person in the Navy in
San Diego that could do it but he felt this treatment was a better bet. When ask about a refferal to a lung Cancer
specialist he said he was a lung doctor. He then said do you want this treatment I told him I needed time to think
about it he said you have until tommorrow I am on Vacation for two weeks on the close of business friday and have other
surgeies to perform when I get back so call my nurse by noon tomorrw. I left and decided I did not want the treatment
unless I had the Needle Biopsy I emailed a local University and their cancer reasearch center to one of their proffesors
/ head onc Doctors who told me she would love to see me in her clinic of course insurance will not cover this but better
broke and under treatment then well off and ill or dying. After only one week I am scheduled for a needle biopsy on
Tuesday the 16th of March and she says the results should be back by friday so we can start to set up treatment the
wanted to do a PET/CT Scan also but my insurance TRICARE wil not cover it with out a refferal from my Dr. or the naval
Hospital. I went to see the Patient relations people and filed a complaint about the inadequate treatment and told them
I refuse to see this doctor again and to release me to out side care.
Well enough just scared and wanting to know should I of just did the operation or was a needle biopsy needed?
I cant believe after 26 years of service my whole adult life now this, all my other test showed normal PFTs, Stress test
for the heart I just five months agao ran 2 1/2 miles in 11.75 minutes now My chest hurts I found every little pain
makes me thnk the cancer is spreading, in june of 2003 my sister died of a brain anerism she hd lung cancer and was a
stage four she seemed to beat it or at least after three years was told she was in remission, but I don't think they
ever checked to see if it was a tumor. Thank You all for listening I pray for you all daily peace and goodness be with
all.
Hugs and Happy Thoughts
Frank (aka) "stewburner"
Hi Frank,
I'm sorry you have to face this. It's a terribly rude surprise, isn't it?
I am NOT a doctor, I'm a lung cancer patient with some experience and a lot
of opinions, some of which I'm planning to inflict on you if you keep
reading. :)
What probably happened here is, the pulmonologist guessed that you were
Stage 1 because he didn't know there was anything in the other lung. When
the PET scan showed a possible tumor there, too, you were automatically
considered Stage 4 because the PRESUMED cancer is in both lungs. Presumed
is the operative word here because it's possible that they're cancer, you
NEED a diagnosis ASAP. It's quite a large leap to assume any of it is
cancer, even though it's a very reasonable guess. And also a leap to say
the PET "activity" in your right lung is a tumor because, if it were, it
should have showed up on the CT scan as well. My small tumors have all been
easily seen on CT when they just barely lit up on PET.
> I left and decided I did not want the
> treatment unless I had the Needle Biopsy
Not to criticize you, as you had a lot to swallow in a short time with no
prep, but, in my OPINION you made the wrong choice here. My choice is
always for surgery, given the option. The "excisional biopsy" (read
"surgery") virtually never fails when the tumor is on the table. When a
tumor's removed (1) it's out of your body, which is good and (2) they have
plenty to examine, hence no incorrect diagnosis (assuming they are
competent.) A needle biopsy is OK if it's all you can get, but it's a poor
substitute for removal. I would see if I could get the deal back and go for
it. What I found especially appealing was that they were going to do both
lungs. I'm very surprised you got such an offer, I don't think that happens
very often.
> After only one week I am
> scheduled for a needle biopsy on Tuesday the 16th of March and she
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> just scared and wanting to know should I of just did the operation or
> was a needle biopsy needed?
I'm not in a position to judge, but it's not clear to me that the treatment
was inadequate. As I've already said, I think you should get the operation
if you can.
Since you're getting another needle biopsy tomorrow, I hope it works this
time, because you need a diagnosis! You need to know if it's really cancer
and, if it is, whether it's "small cell" or "non-small cell" to even begin
any treatment other than surgery. Yes, surgery has risk, it is definitely
non-trivial, but you're young and, I presume, healthy so you should not
have a problem with it.
> I cant believe after 26 years of service
> my whole adult life now this, all my other test showed normal PFTs,
Let me tell you, there's never a convenient time for it. It arrives and
you get to deal with it as best you can. That's where this group and
others like it come in, there's a lot of knowledge, support and help here.
> Stress test for the heart I just five months agao ran 2 1/2 miles in
> 11.75 minutes now My chest hurts I found every little pain makes me
> thnk the cancer is spreading,
This is the REAL stress test. :) You are just reacting normally. It's
scary, but you get used to it. Lung cancer is bad stuff, but lots of
people live a long time with it and some even beat it. Hang in there.
Good luck with the biopsy. I'm getting a colonoscopy Tuesday to see what
lit up (on PET scan) in my colon.
Frank
67-yom; Lobectomy 3/99, Stage 1B adenocarcinoma; no adjuvant chemo or
radiotherapy.
VAT 7/03. Stage 4 adeno.
Carbo-taxol 8/03 to 11/03, stopped for neuropathy.
Celebrex 100 mg/day Aug 03 - Feb 04, 800 mg Feb 04 - present.
CT scans 9/03, 12/03 and 1/04 show no change.
PET Feb 20, inconclusive. PET again April 6.
Been lucky all my life; planning to be lucky a while longer.
stew - 15 Mar 2004 03:44 GMT
Thank You
Frank
I will keep it in mind.
and can always reconsider the surgery.
Hugs and peace to you and yours
>Hi Frank,
>
[quoted text clipped - 78 lines]
>PET Feb 20, inconclusive. PET again April 6.
>Been lucky all my life; planning to be lucky a while longer.
stew - 19 Mar 2004 04:51 GMT
>Hi Frank,
>
[quoted text clipped - 78 lines]
>PET Feb 20, inconclusive. PET again April 6.
>Been lucky all my life; planning to be lucky a while longer.
Hey Frank How did your colonoscopy go? I wish you much luck my freind.
I pray for good thiings for you.
Hugs
Frank (aka) "stewburner"
Frank Gingrich - 20 Mar 2004 02:47 GMT
It was clean, I'm happy to say. We have no idea why it lights up on PET
scans. It's a bit of good news.
I've been waiting to hear the results of your needle biopsy. I was pleased
to see that they didn't deflate any lungs this time. :)
Frank
> Hey Frank How did your colonoscopy go? I wish you much luck my freind.
> I pray for good thiings for you.
>
> Hugs
>
> Frank (aka) "stewburner"
One other thing I forgot to say, Frank. Pretty soon you will start seeing
and hearing statistics on survival and what all. Ignore them or, at least,
take then with a large grain of salt. Neither you nor any of us is a
statistic. We are individuals, our cancers are individuals, and we are all
a little different. So, you can generalize about what might happen or how a
treatment might work because of what a lot of others experienced, but you
may or may not fit that mold, better or worse.
Good luck.
Frank
stew - 15 Mar 2004 03:46 GMT
Good Luck on your Scope
May only good blessings be bestowed upon you.
Hugs and Prayers for you and yours
Frank
>One other thing I forgot to say, Frank. Pretty soon you will start seeing
>and hearing statistics on survival and what all. Ignore them or, at least,
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>
>Frank
> First let me say I am so greatfull for finding this newsgroup.
> Second let me introduce myself I am Frank I am 43 years old and just recently retired from the US Navy after 26 years,
[quoted text clipped - 34 lines]
>
> Frank (aka) "stewburner"
Hello Stewburner,
Welcome to this newsgroup. I am sorry to read your story, it sounds like
you have certainly been put through the mill emotionally.
I am afraid that I am not a medic (I was a carer) but others here are and no
doubt will comment on your situation shortly.
In the meantime, I offer you hugs.
Alayne
> First let me say I am so greatfull for finding this newsgroup.
> Second let me introduce myself I am Frank I am 43 years old and just recently retired from the US Navy after 26 years,
[quoted text clipped - 34 lines]
>
> Frank (aka) "stewburner"
Frank,
I'll keep you in my prayers. Let us know when you can, how things are going.
I'll be gone for a few days.
Jill