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Medical Forum / Diseases and Disorders / Breast Cancer / July 2004

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kaci - 17 Jul 2004 01:59 GMT
Hi guys. Brief history: lumpectomy left breast 11/00. 42 y.o., Stage
3A or b? Don't remember. 16 of 24 positive nodes, 6 cm. tumor shrunk
with adriamycin/cytoxin chemo for 6 months, pre-surgery. Radiation
post surgery, 28 treatments. Alrighty then! Back to business.

Fast forward to 2004.

7/12/04: I had an MRI ordered by my surgeon because she felt 'hard
edge' at surgery site. It was a BIRADS classification 4. Report says
in part, "1 cm posterior and a few mm superior to the lumpectomy site
there is an irregularly shaped 6 mm mass-like area of enhancement
which is considered suspicious for malignancy."

Now I get a biopsy. Again.

Please don't get me wrong. I am grateful for every day I have lived
since surgery, and feel fortunate that most of those days I have felt
pretty good, actually. But now I find myself right back at the place I
was in February 2000, only this time I'm scared s***less about a
diagnosis of recurrence.

Tests, waiting, fear, tests, waiting, fear... it's a constant cycle
which I suppose is the price we pay as cancer survivors. So many of
you here are so logical and positive in your approach to the disease
and are dealing with so much more, that I'm almost ashamed to say that
mentally, I feel like I'm in purgatory. Like if I don't keep busy,
I'll go out of my mind with stress.

I'm the one who kept my cancer to myself first time around because I
couldn't stand the thought of everyone I knew treating me like
porcelain. So you guys please get ready to be my support system again,
if need be. I'm sorry if I sound selfish or whiny. I just read the MRI
report and I'm not in such a good place right now... But I do feel
better after getting this off my...  Writing this out. (that was
almost a *really* bad pun...)
kaci
bartalo@webtv.net - 17 Jul 2004 03:52 GMT
Kaci...you have a lot of company in "purgatory" and some days when my
fear takes a bad hold of me, I think I have crossed over into Hell!
Also, who are all those people who are supposed to be treating us like
porcelain since we have had bc??    Has not been "my" experience but I
guess it is for the best.

I no longer am concerned about trying to put on the brave face for the
rest of the world.  When I need a good cry, I cry and when I need to
give vent to my feelings I do.  What is most important is that we find
the strength whether it is in a support group, our loved ones, and/or
prayer to withstand the battle and not give up.

Take care,

Bea
kaci - 17 Jul 2004 15:38 GMT
> Kaci...you have a lot of company in "purgatory" and some days when my
> fear takes a bad hold of me, I think I have crossed over into Hell!

Hi Bea. LOL! I know the feeling.

> Also, who are all those people who are supposed to be treating us like
> porcelain since we have had bc??    Has not been "my" experience but I
> guess it is for the best.

Noooo.... that was just *my* perception of what would happen if I were
to tell friends and acquaintances that I had bc. An irrational one?
Possibly. One nurse I had when I first started getting treated always
had a visibly sympathetic tone with me and it was depressing. I know
she meant no harm but it simply rubbed me the wrong way. She acted
like I was going to keel over at any moment, and it was about that
time that I decided the fewer people who know about my illness, the
better.

> I no longer am concerned about trying to put on the brave face for the
> rest of the world.  When I need a good cry, I cry and when I need to
> give vent to my feelings I do.

Same here. Just wish I could choose my spots better. When I got my MRI
results yesterday, I started blubbering right in the doctor's office
to my great embarrassment (I haven't spoken to my onc. or surgeon
yet). But I felt better afterward. And today's a new day.

On another note, I could really relate to an earlier thread that
talked about not always being able to be a "good" cancer patient, and
the rejection of words like "courageous", "battle" "warrior", etc.
used to describe us and our situation. At times I don't feel any of
those things.

What is most important is that we find
> the strength whether it is in a support group, our loved ones, and/or
> prayer to withstand the battle and not give up.

You got that right. Though I consider myself a Christian, right now I
am having some problems in the area of faith.  Since the underlying
theme of religions seems to be "do good and good will come to you,"
when I see children, infants sometimes, undergoing chemo it makes me
wonder why them? What sin has a child committed in their short time on
Earth that should warrant this being visited on them? But that's
another TAN, I guess...
kaci
Kaye301 - 18 Jul 2004 15:23 GMT
Kaci wrote: << Since the underlying
theme of religions seems to be "do good and good will come to you," >>

It depends on the religion.

<< when I see children, infants sometimes, undergoing chemo it makes me
wonder why them? What sin has a child committed in their short time on
Earth that should warrant this being visited on them? But that's
another TAN, I guess... >>

You might want to read the book, WHEN BAD THINGS HAPPEN TO GOOD PEOPLE by Rabbi
(?) Kushner, which was a best seller several years ago which addresses the
above question to others of all faiths besides his own.  It should help you
better understand that question in terms of religion--faith, etc.
Tim Jackson - 17 Jul 2004 09:41 GMT
> Hi guys. Brief history: lumpectomy left breast 11/00. 42 y.o., Stage
> 3A or b? Don't remember. 16 of 24 positive nodes, 6 cm. tumor shrunk
[quoted text clipped - 6 lines]
> there is an irregularly shaped 6 mm mass-like area of enhancement
> which is considered suspicious for malignancy."

Oh, what a pain.

One could look on the bright side, you may have a treatable local
recurrence, which, while it is like sliding down a snake back to near the
start of this game, isn't as bad as having distant metastases which puts you
in a different game altogether.  One might argue that the fact it -hasn't-
shown up anywhere else by the time recurrence on the original site was
found, suggests it is less likely to ever do so.

Tim Jackson
kaci - 17 Jul 2004 15:45 GMT
> One could look on the bright side, you may have a treatable local
> recurrence, which, while it is like sliding down a snake back to near the
> start of this game, isn't as bad as having distant metastases which puts you
> in a different game altogether.  One might argue that the fact it -hasn't-
> shown up anywhere else by the time recurrence on the original site was
> found, suggests it is less likely to ever do so.

I guess I'll know soon. I'm still hoping there is a chance that this
is fat necrosis or scar tissue. But if not, I'll deal... it's what we
do. Thanks, Tim, for the words of encouragement.
kaci
Guess Who - 17 Jul 2004 16:58 GMT
Yes, like Tim said a local recurrence is very treatable, keeps us posted.

Signature

ALEXANDRA KOFFMAN

>
> > One could look on the bright side, you may have a treatable local
[quoted text clipped - 12 lines]
> do. Thanks, Tim, for the words of encouragement.
> kaci
Kaye301 - 18 Jul 2004 15:18 GMT
Hi Kaci--sorry that you are dealing with this.  I have a good friend and
colleague who recently had a lumpectomy and will have both chemo and rads for a
cm tumor.  She had 30 nodes removed but fortunately only one was positive.  Dr.
had thought more would be since positive node was 3 cm.
Interestingly, at initial consultation the surgeon told her that her chances of
recurrence were much greater with lumpectomy although chance of overall
survival were about the same.  She trusted the dr. and asked what he'd
recommend.  He said lumpectomy.  I am not sure how much he 'heard' her when she
told him she didn't care if he took the breast.  She would have been fine with
the mastectomy.  However, this was the first time he had ever met her.  She is
a beautiful woman and she put her complete trust in him.  I am guessing he
recommended lumpectomy w/rads based more on stats and fact that what he thought
would be least interfering emotionally.  
However, it seems to me there is no sure way to predict overall survival
between the two methods.  If there is greater likelihood of recurrence with
lumpectomy, how can they validly compare overall survival results between those
who had mastectomy.  They are not comparing treatment techniques.  Latest
research is now showing that those who have mastectomy along with chemo and
rads reduce their risk of recurrence even further...

.<< Tests, waiting, fear, tests, waiting, fear... it's a constant cycle
which I suppose is the price we pay as cancer survivors. So many of
you here are so logical and positive in your approach to the disease
and are dealing with so much more, that I'm almost ashamed to say that
mentally, I feel like I'm in purgatory >>

Kaci, I hear 'ya.  I am not sure that the dr's take this into account when
recommending the less aggressive treatment--only immediate reaction(s).  I do
understand your concerns and fears.  My best thoughts are with you and hope
that latest treatment(s) will take care of this completely for you.  {{{Hugs}}}
Guess Who - 18 Jul 2004 12:58 GMT
That is why I choose mastectomy, I didn't want to deal with a local
recurrence although it doesn't effect survival.  I agree that some woman who
choose lumpectomy don't heat the part about recurrence.
Kaye301 - 19 Jul 2004 04:14 GMT
Alex wrote: << That is why I choose mastectomy, I didn't want to deal with a
local
recurrence although it doesn't effect survival.  >>

That's what we are told the stats indicate but no one person is a statistic.  
It doesn't make sense.  Does that mean that even with mastectomy we get
recurrences elsewhere at same rate with same outcome?  
kaci - 18 Jul 2004 17:24 GMT
> However, it seems to me there is no sure way to predict overall survival
> between the two methods.  If there is greater likelihood of recurrence with
> lumpectomy, how can they validly compare overall survival results between those
> who had mastectomy.  They are not comparing treatment techniques.  Latest
> research is now showing that those who have mastectomy along with chemo and
> rads reduce their risk of recurrence even further...

Hi Kaye. I have been doing some reading on tumor recurrence rates of
lumpectomy vs. mastectomy, and what I've found varies, at best. Stats
seem to vary by age of the study, and a lot of information available
on the web goes back to the early '90s. Recent data is more difficult
to find for the layman. For instance I read one article that said
there's a 15% chance of recurrence with lumpectomy vs. 1% with
mastectomy; others say recurrence and survival rates are "about the
same" if clear margins with lumpectomy were achieved. Still other
statistics say that with the stage and grade of tumor I had there is a
36% chance or less I'll still be here two years from now.

Info on the specificity of MRI differs as well. The accuracy of
diagnostic MRI of the breast apparently has improved greatly in recent
years but there are still enough "false positives" and "false
negatives" for it not to be relied upon as a standalone tool.

With all this surfing and trying to interpret medical terminology, I
come away from it overwhelmed and mostly with a sense of impending
doom. All the more difficult to wrap my mind around since, at this
moment, I feel fine. And if this "mass like enhancement" does turn out
to be cancer, it raises the question of why, if clear margins were
achieved at surgery (which my surgeon said was the case) did it
return? If it is residual tumor, how did it survive radiation, chemo,
and 3 years of tamoxifen? That would make it particularly aggressive,
no?

Ay yi yi, my brain hurts :)
kaci
Tim Jackson - 18 Jul 2004 20:50 GMT
> Hi Kaye. I have been doing some reading on tumor recurrence rates of
> lumpectomy vs. mastectomy, and what I've found varies, at best. Stats
[quoted text clipped - 6 lines]
> statistics say that with the stage and grade of tumor I had there is a
> 36% chance or less I'll still be here two years from now.

There are two things here - recurrence and survival.

Recurrence includes local recurrence (down the snake back to start) and
distant metastases (mostly fatal).

The stats. I believe say that there is higher risk of -local- recurrence
with lumpectomy than with mastectomy, but that the overall survival rates
are indistinguishable.

Personally, if I were a woman and past my nubile years, and the cancer was
anything but the smallest, with what I know now I'd be inclined to opt for
mastectomy.  We all hate losing bits of our body, wherever they are ( I know
how long it took me to come to terms with losing a finger joint), but there
is a simplicity about mastectomy - cutting along the dotted lines rather
than through the bulk tissue, which makes healing simpler, complications
such as local recurrence less likely, and prosthesis simpler.

Your last statistic was no doubt true at the time of surgery.  However now
you are 4 years down the line your chance of escaping metastases is
improving.  As a large part of the cohort has now probably relapsed or died,
the chances for the survivors have improved - for example if 50% have
progressed, then your chances of long term survival will have risen from 36
in 100 to 36 in 50, or 72%.  OK that's simple-minded extrapolation of
statistics, and the reality is more complicated, but it is true that after
the first couple of years the rate of recurrence goes down steadily.

Tim Jackson
Kaye301 - 19 Jul 2004 04:22 GMT
<< And if this "mass like enhancement" does turn out
to be cancer, it raises the question of why, if clear margins were
achieved at surgery (which my surgeon said was the case) did it
return? If it is residual tumor, how did it survive radiation, chemo,
and 3 years of tamoxifen? That would make it particularly aggressive,
no? >>

In response to the last part--well, perhaps.  There are alot of unknowns about
cancer.  Some theories indicate that it lies dormant.  Others indicate that it
is very slow growing and not yet detectable.  However, as far as the
effectiveness of chemo--when someone does have metastatic disease and is given
chemo, sometimes the chemo works to get rid of some but not all of the cells.
Chemo works best on those cells dividing quickly.  Perhaps they don't all
divide at the same rate and it works less well against those that were slow
growing.  We are all given the same chemo--or most of us--as standard.  From
what I have come to understand is that one size does not fit all.  In other
words the chemo may not have been effective for all the involved cells.  Then
there is also the possibility that something interfered with the effectiveness
of the chemo or radiation at the time those had been initially given.  Or it
worked for awhile--long enough to make it/them dormant but didn't kill or
completely get rid of them.
Tim Jackson - 19 Jul 2004 08:41 GMT
> And if this "mass like enhancement" does turn out
> to be cancer, it raises the question of why, if clear margins were
> achieved at surgery (which my surgeon said was the case) did it
> return? If it is residual tumor, how did it survive radiation, chemo,
> and 3 years of tamoxifen? That would make it particularly aggressive,
> no?

Not particularly, more it makes it particularly lucky.

Perhaps there was a microscopic tumour in the residual tissue.  There is a
gap between the largest tumour that chemotherapy can destroy completely, and
the smallest one that can be detected from outside the body.  Chemo works
best of the parts of the tumour that have a good blood supply, other parts
can escape.  It is -very- good at killing individual cells and tiny tumours,
and at reducing the size of larger tumours, a bit like peeling an onion.
Radiation kills a high percentage of the cancer cells, but not all of them.
Tamoxifen only attacks the commonest genetic pathway, (ER overexpression)
but there are many others, so it only halves the risk.  Finally, your immune
system is quite good at picking off odd free-floating cancer cells, but
doesn't mount a mass defence against what is mostly your own proteins, and
is easily overwhelmed.  It's all about getting the numbers of cancer cells
down to a level that the immune system can cope with.

So there is always the small possibility that the odd fragment can dodge all
the bullets you fired at it, and live to fight another day.  It happens to a
significant minority.

Tim Jackson
 
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