Ah, Katie.  What can we say?  We're all in this awful mess together.
Personally, I am glad I had my mastectomy and chemo in an attempt to fight
this awful sneaky beast. Sure, if it hadn't been diagnosed, we would live
(for a while) in happy ignorance.  But then what?  Eventually we would have
100% chance of it showing up in bones, brain, etc. and no chance to live any
longer.  Now at least we have a fighting chance of survival for many more
years. By fighting this killing beast inside us we have a good chance to
live much longer.

Keep up the fight!

Marianne

If it has got as far as the lymph nodes then without treatment progression
to the terminal stage is almost inevitable.  Life in happy ignorance would
have been very limited.

The benefit from chemo in terms of increased quality life expectancy is well
established (Cole, The Lancet, Vol 358, p277) and depends mostly on age,
cancer staging, and how severely your life is disrupted by chemo side
effects.  Unquestionably a middle-aged woman (I'm guessing) with a small ER+
and Node+ cancer will benefit quite significantly from treatment, and the
treatment of choice would be chemotherapy and hormone therapy (eg Arimidex),
plus radiotherapy where breast-conserving surgery was used.

There could be an argument for forgoing chemotherapy and using an aromatase
inhibitor (or Tamoxifen if you are pre menopausal) alone in this sort of
case, if chemo was particularly difficult.  This is something to decide in
consultation with your oncologist who knows the details of your case.  The
hormone therapy is often the biggest life saver.

Tim Jackson

The philosophy my wife and I have used during her now eight plus years of
facing the disease is that at the end of the day, whatever the outcome, we
want to be able to look back and say that yes, we gave it our very best
shot, up to, but *not* including, alternative "medicine".  Our doctors
calculate the risk of bc recurrence by factors which include the size of the
tumor and the number of nodes involved, and in her case reckoned the chemo
would reduce the risk level by one-third, so of course we took it.  Of
course we can't predict the outcome, but we are staying with our "give it
the best shot"  approach.  Good luck to you!

Hello Kathie:

How can you even think that way?  I have had stage IV breast cancer for
two and one half years.  I have been on chemo for one and one half years
and now on arimidex.  I also have Multiple Sclerosis for over 30
something years.  I can honestly say that I am happy to have survived
this long and hope I will continue to live this way for years to come.
I do not feel ill even though I have had so many different chemos with
diverse reactions.  I want to be in this world to see grandchildren etc.
Perhaps this might sound unrealistic, but I want to live for many
countless years to come.

My cancer was not my doing as I went for yearly mammographies.  Sadly
mine was misread and by the time my BC was found it was stage IV!  I can
walk around as a grump and be angry with everyone responsible or I can
live a full active life.  I made my choice and I hope that you also make
the right choice.  We all make our own choices and my choice is to live!

G-d Bless.

Laura K.*

Hi Katie,
It's been twenty years since my stage II diagnosis, and I still recall
pretty vividly the "feeling needy" part.  These are tough days.  There is
much to consider during an extremely stressful time.  I was diagnosed at the
age of 35 and I had two elementary school age children and a wonderful,
loving husband.  I hated the idea that the beast had invaded my ordered
life, but it didn't take too long before I knew that I'd have to do
absolutely anything that would give me the best shot at life.  I had a
modified radical mastectomy, followed by a year of CMF chemo.
(Incidentally, I worked as a kindergarten teacher during the whole year of
my treatment).  I know that various chemo agents give widely differing side
effects, so I say that I worked, knowing that I was fortunate.  The side
effects were considerable, but tolerable.....many women on this group have
said that the duration of their treatment was no picnic, but doable.  I was
another one who knew that if the cancer returned, I'd need to be able to
think that I'd done everything in my power to be well.

You've found a wonderfully supportive group of men and women here, Katie.
Please continue to post.  I will be thinking of you and wishing you well.

Barb

<<What I want to know is
what the stats look like if these traditional treatments are refused. >>

Katie, surgery is said to 'cure' 50% while Chemo is alleged to stop 15% and I
believe rads are listed at 5-15%.  Depends on which percentage you're looking
at, but they are NOT cumulative. Depends on what side- or long-term effects
you're willing to encounter or endure. Depends too on your age, menopausal
statis, aggressiveness of the cancer itself, plus general immune system, as
well as your mind-set.  Depends on a LOT of variables that have nothing to do
with how many nodes are/were involved.

The biggest advice I can give you is do your homework as fully as possible. Go
online, LEARN. (Note which articles, etc gain your attention -- that can help
point out what you want to do in your inner-heart.)  

Cancer is NOT an emergency. You have time to be fully informed and to make
decisions based on YOUR best needs and desires.

Don't let them take 'all' your nodes. Insist on as few as possible (and WRITE
that on the informed consent report!) --Nodes aren't not taken for your health
benefit anyway, but to a) reduce tumor load in your case and b) establish the
stage your cancer is in so the doctors know what THEY'RE dealing with.  --
Meanwhile, nodes are important filters for removing toxic substances from your
body, so the fewer removed, the better.

Don't allow anyone to frighten you any further. Do your homework so you can
have fully informed options for yourself, then decide what is most comfortable
for you. -- It never hurts to get a second or third opinion either. These can
also help you make the 'right' decisions for yourself--no matter what those
decisions might be.

Dr. Susan Love's breast book is a good place to begin, as is Dr. John Link's
book, which helps you evaluate your own prognosis based on all the variables of
your particular situation.

Find a good doctor you can trust who is willing to discuss whatever you find
that is puzzling. Do NOT accept statistics as a base criteria. Ie: actual
survival versus 'relative risk' is definitely NOT identical. --Each of us is
different, but so many are treated identically.

See if you can have your lump tissue tested to determine which chemo might be
'right' for your tumor (if chemo is your choice)...(Google Dr. Robert
Nagourney, a prominent CA oncologist who helped develop the procedure for
Rational Therapeutics) That can save a lot of the shotgun second guessing that
oncs are more or less forced to practice at the moment, trying one or another
chemo which may--or may not, do the job. (Procedure itself requires shipping
FRESH tissue <done at biopsy or surgery>, and there are groups throughout the
states who will do this--contact above for a location near you. --- There is
something comforting about knowing which chemo is best for you.

Five years ago I was diagnosed at Stage IIIb, and after double mast (my choice
due to a 7 cm lump that HURT due to lobular invasive, which also has a higher
chance of going to the other breast)--then I chose not to go any further.---
HOWEVER, this was based on intensive and exhaustive research for MY particular
situation. Bottom line for me was 89% chance of recurrence within two years,
coupled with the fact that chemo OR rads were only 'good for' less than 3 mos.
ACTUAL survival time.

My bottom line was quality of life issues, preferring to stay as healthy as
possible with crappy odds FOR that quality, especially if I did chemo. --Either
way, mortality loomed.  --So I said no, based on what *I* was willing to put up
with. -- I am also in my 60's, post-meno, basically healthy and have had my
children, a wondrously supportive husband, and  a happy life overall.

From there, I made massive lifestyle changes -- diet, nutritional supplements,
vitamins, etc (again based on intensive research for what MIGHT work), I
learned to say 'no' to things which were upsetting to me...I strove for better
'balance'.-- Figured if I was going to die anyway, I'd try to make whatever
time was left the 'healthiest' physically, spiritually and mentally as I could.
-- So far, it's working.

I do not necessarily advocate this for anyone else. This was MY decision based
on other things too, like really knowing myself and knowing my own body and
personal goals for a meaningful life.

We're each different. Ultimately, you must decide for yourself. If you want to
explore nutritional alternatives, I'd suggest reading the Annieappleseed
project for pointers.
Ann Fonfa, the list owner, is a still-healthy 15 year BC survivor who has also
experienced several small recurrences during that time. -- Accept and
incorporate whatever is comfortable for YOU. It's ok to ignore what isn't.  

Also, the Life Extension Foundation (www.lef.org) has cancer "protocols" for
nutritional supplementation, complete with medical abstracts supporting their
recommendations. (This is pretty much what I've followed.)

I belong to a private group of women who are fighting back in their own way
(some of which is listed above, others are more determined, some are using
really far out techniques <for me>-- we are ALL surviving. )-- Feel free to
contact me if you're interested in exploring further.

Meanwhile, rest comfortably in doing what is right for YOU.

God bless and Namaste


Lady8

Hi Katie,
I'm sorry to hear of your situation.
I was diagnosed with Stage II breast cancer this year, had surgery, 3 months
of chemo, and radiation.  I am now on tamoxifen for 5 years.
My lymph nodes weren't involved (I only had two removed due to a sentinal
node procedure my surgeon was trained in).  However, my cancer was
aggressive and had spread into the breast tissue.  Based on that, the whole
protocol above was recommended.
I am not an expert on stats, but I will pass along what my medical
oncologist told me:
1)  radiation and partial mastectomy is as effective as full mastectomy
without radiation;
2)  although there was no lymph node involvement, there is a 5 - 15% chance
that the cancer had gone to other parts of my body and is undectable,
therefore the recommendation for chemo;
3)  chemo and tamoxifen would increase my long term survival rate (over 5
years) by 10% on a combined basis.
As I'm sure you know, there are risks involved with the treatment itself,
depending on the type of chemo you are given, as well as with radiation and
tamox.  I really struggled with the decision each step of the way as to
whether or not to proceed.
At the end of the day, it certainly is a personal choice.  Have I done the
right thing?  Will I develop other cancers because of the very treatment I
received to fight cancer?  I guess only time will tell.  You seem to be
taking the right steps by being your own advocate and finding out as much
info as you can before making your decision.
Best of luck to you in your decision and in your fight against the beast.
Laurie