I also had (squamous cell) lung cancer. I was operated on 9/10/97 and 2
lobes of my right lung were removed. Only one had cancer in it. My doctor
and oncologist also say it's my choice with chemo. Two nodes in cancerous
lobe were positive, 5 negative.
I too have trouble finding info on web. I don't know what to do. I had
one chemo treatment and had a very bad time with it. I am going to Sloan
Kettering on 1/6/98 for another oncologist's opinion and will be glad to
share results. I am also exploring the diet/vitamin/herb angle.
I just removed myself from list because of overwhelming # of messages but
would like to hear from you. My email address is
bsilverman@worldnet.att.net Hope to hear from you soon and share info.
It's very confusing!!
Thx - Barbara
----------
> From: victoria@best.com
> To: mol-cancer@lists.meds.com
> Subject: Re: [MOL] adenocarcinoma T2N1MO
> Date: Monday, December 08, 1997 8:03 PM
>
> Carla, I just joined the list and your note jumped out at me, as we have
> remarkably similar stories and the same cancer type and TNM number.
>
> I coughed up
> blood on August 2, and after an xray that showed a mass, lots of hemming
> and hawing and antibiotics and a failed bronchoscopy, they did
> a mediastinoscopy to pull out some suspicious lymph nodes. Those turned
out
> to be negative, thank God, so they
> allowed me to have the surgery to remove the lung mass.(otherwise, they
> would have withheld the opportunity, since it wouldn't
> have changed the outcome)... I had the surgery on 11/18,...the full
blown
> thoracotomy.(i'm sure the scar is at least 14 inches).they removed
> the right middle lobe with the 5 cm mass in it and there was one lymph
node,
> nearest the mass, that was cancerous, and the
> others farther out were okay....
>
> I'm being told that the 5 year survival rate is 30 to 40 % for the
> population of people in my situation.
> and that women tend to do better than men, and that younger people tend
to
> do better than older people, (i'm 49) and another thing in my
> favor is only having the one lymph node involved. I haven't yet found
much
> on the internet that's useful. I may be kidding myself, but I am
thinking I
> have a better than even chance of not having a recurrence.
> In any case I don't think you're warranted in your belief that it's a
death
> warrant.
>
> They were suggesting a PET scan to me at one point (instead of the
> mediastinoscopy..) I read everything I could find. It's still kind of
> experimental and it seems to give false positives as well as false
negatives
> It also doesn't seem useful to detect brain metastases because
> of what the brain normally does with glucose...I finally asked the
doctor,
> "If I were your mother, what would you recommend?" and she
> said the mediastinoscopy...so I did it instead. I'm guessing it might
come
> in handy now, though for watching for distant metastases...
>
> I asked my doctor the other day, how a recurrence of the cancer would be
> likely to manifest itself. She said usually as a distant
> metastasis..adrenal glands,
> liver, brain, etc...blood tests would be used to see if liver problems...
>
> I have the first appointment with a medical oncologist next
Thursday..(the
> one assigned through the "closed" HMO I belong to...). I amworking on
> lining up
> the local expert at UC San Francisco to get a second opinion. I'll be
glad
> to share what they have to say...
>
> Also, there is a medical library at my HMO that I'm going to go and do
some
> research at, to try to determine...of the 30 or 40 people who
> do well out of 100, what is it that they do that I can do too, to improve
my
> chances...I'll pass along anything I can find out. It'll probably be
> a week or so at least till I can get there (still not able to drive or
> anything..)
>
> Are you still smoking? I hope you've been able to quit, or quit before
this??
>
> In any case, it's great to find others who are going through the same
> experience. I'm finding it very
> difficult to find any information in print. The HMO's Health Education
> Center has 3 shelves worth of
> books on breast cancer, and not a single book, video or ANYTHING about
lung
> cancer. Even though
> lung cancer kills more women than breast cancer. Something seems out of
> whack about that.
> Anyway...
> All the best and I'll pass along what I can glean from my doctors...
>
> Torie
> San Francisco
>
>
>
>
>
>
>
> At 12:22 PM 12/4/97 -0500, you wrote:
> >The past two months for me have been a whirl wind. I thought I had a
sinus
> >infection, then the flu and after 21 days on antibiotics, I had chest
> >x-rays and they found the mass. I have smoked most of my life and am
45,
> >so they were pretty sure what to expect. After 2 bronchoscopy's, they
> >could not get a good biopsy because of the location of the mass. It was
on
> >the bronchius and against the primary pulmonary artery and they knew
from
> >the CT scan that it was approximately 3.7 cm. So surgery was the next
> >move.
> >
> >I saw 3 surgeons. The first surgeon didn't commit to the type of cancer
> >but explained that the only way to get a biopsy to know what they were
> >dealing with was surgery and he explained the extent of surgery, which
> >scared me to death. As a female I wasn't very happy about the massive
> >incision for a biopsy, I felt like a cow being taken to the slaughter
> >house. So I sought a second opinion, which he felt sure it was large
cell
> >and the type of surgery would be the same. Atleast a 14" incision,
cutting
> >through my ribs and then using a rib spreader to go in for the biopsy.
I
> >expressed the same concern about the surgery and was told that was it.
> >
> > So I went on to a third surgeon. This surgeon felt it was probably
small
> >cell cancer, or not cancer. He is a pioneer of a new type of surgery
which
> >involved a 3-4" incision under my arm and one or two 1" incisions to go
in
> >for the biopsy with a scope. He spent alot of time with me and made me
feel
> >a part of my health and not so hopeless, so we scheduled surgery.
November
> >3rd, I had the surgery and also had to have my entire lung removed
> >(pneumonectomy), but it was all done from the small incisions and I was
out
> >of the hospital in 5 days. I praise God for sending me to the surgeon I
> >found, he has been the one to keep me on track through all of this.
> >
> >Now I am faced with the oncologist decision. I have seen one so far and
I
> >know that she is caring and well educated and she spent an hour
explaining
> >it all to me. The cancer was in one of the lymph nodes in the first
layer
> >right next to the tumor and the other nine were fine. The oncologist
says
> >that her field is split on treatment for me, but it is my decision.
> >One-half say no further treatment after surgery and the other half say
to
> >go for the chemo regardless. Her feelings coincided with the first half
> >not to go through the chemo due to the side effects and the lack of
> >evidence that it is effective to a great extent with this type of
cancer.
> >She said they would monitor me again in 3 months. The statistics were
> >30-50% chance of recurrance in 1-2 years given to me with all my facts
> >considered. She said that I would be the best monitor watching for
> >headaches that don't go away, coughs etc...
> >
> >I am extremely concerned that they would find it if it did. You see I
had
> >4 sets of chest x-rays in the past two years, including a set in May and
no
> >one found this tumor which turned out to be 4.7cm and atleast 2 years
old.
> >I also had full blood work ups done in July and nothing showed up and I
> >understand that this is how they monitor this, so I have no faith in the
> >monitoring.
> >
> >I went back to my surgeon who advised that I get additional opinions
> >because I am not comfortable at this point, but he also said that there
is
> >a relatively new type of scan called a Pet scan and he felt sure that
this
> >would show another tumor if it developed. When I talked to the
oncologist
> >Tuesday, she said that those scans are controversial and don't always
show
> >tumors. She said she has had people with tumors that had PET scans and
> >they didn't show up, but they did on CTscans. Then when I asked her,
she
> >also admitted that she had had patients that had had CT scans where they
> >didn't show up, but did on PET scans.
> >
> >I have searched the internet for information on this type of cancer and
> >feel that it is a death warrant, but know that I can't feel that way. I
> >have to make peace with this and do an attitude adjustment to put my
faith
> >in beating this 100%. To get there I need help in a couple of areas:
> >
> >1) does anyone have any sites on the internet where it is not all
doomsday
> >information on this type of cancer and its recurrance
> >
> >2) does anyone have any good information on to chemo or not to chemo
with
> >this type of cancer
> >
> >3) does anyone have any good information on detecting tumors/cancer
early
> >in the case of recurrance
> >
> >4) does anyone have any information on alternative healing sites
> >
> >I know this is very long and I apologize, but I felt the only way to
start
> >communication was to lay out all of the details to date. I appreciate
any
> >assistance that anyone has.
> >
> >Sincerely, Carla
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