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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