Dx'd in 3/01, just after my 50th b'day and 9 mos. after a supposed normal
mammogram.  I felt a hardened area within day after that mammo--in upper inner
quadrant of right breast--seemed almost more on chest than breast.  I showed my
ob-gyn a few weeks later and he flippantly reminded me that I had had a  normal
mammogram.  I told him I was confused about what I was supposed to be feeling.
He wrote in my chart 'patient doesn't like to do self-exams' (which was not
true).  9 mos. later I felt a sharp burning pain in that breast (night
before/morning of my 50th birthday) Two days later my breast ached--reminded me
of a mastitis infection that I had had 15 yrs earlier while nursing  my
youngest child.  10 days later, night before I wasleaving at 5:00 a.m. Thursday
morning for an out-of-town conference I saw a change in the nipple on that
breast--couldn't quite tell how it had changed--only that it looked different.
I wasn't able to get to a dr. until the following Monday morning.  I had saw a
nurse practitioner, had a new mammo and saw a surgeon that day who biopsied the
same mass I had shown my dr. 9 mos. before.  I had dx the next day of invasive
lobular.
I opted for a bilateral mastectomy, one side prophylactic w/reconstruction but
was wrongly denied reconstruction on basis of weight.   I was about 25 to 30
lbs over what I should be but in no way obese.  It turned out our health care
facility didn't have the needed staff to do the type of tram that would be best
for me for the bilateral.  I went with bilateral because type of b.c. I had was
type most likely to recur plus a very bad family hx of b.c.  I was dx'd at same
age as my mom and many of her close relatives died of b.c. at young ages.  My
dad's mom also died of b.c. fairly young.
After surgery pathology report indicated 3 types of aggressive b.c. taking
place.  I had pleomorphic invasive  lobular (rare aggressive variant with
relatively short relapse free survival time), a separate tumor in the nipple
within dermal lymphatics (which I was told was a rare presentation of
inflammatory b.c.) and high grade DCIS with comedo necrosis.  I had 9 positive
nodes, extensive lymphovascular invasion, extracapsular spread, and was Her2+
(Supposedly only 5% of those with lobular are Her2+).  I was also ER+  They
didn't test PR or at least there was no report on that.  My tumor markers were
elevated--CEA was 12.9 and CA 27-29 was 58.
After surgery I had 4 AC, then 5 weeks of radiation, then 2 Taxol and switched
and had 2 Taxotere because of hypersensitive reaction to Taxol and also had
Herceptin for one year.  I started Arimidex about 2 mos. after last taxane.  6
days after last Herceptin I had a complete abdominal hysterectomy and
Salpingo--oopherectomy because a couple of mos before I had experienced a sharp
burning pain in my pelvic area (similar pain that I had felt in breast right
before dx) and at same time I was found to have large fibroid and also had
become hypothyroid and blood levels went 'whacky.' This all occurred about 5
weeks after my last of 3 attacks of acute pancreatitis (which I never had
before and for which no known cause was identified).  Then  one month after
hysterctomy I began Celebrex--first took 100 mg/twice day.  A month later I
increased it to 200 mg. twice/day  About 2.5 to 3 mos. after last Herceptin I
noticed my alkaline phospatase level had made highest jump (went up 20 pts in
one month) and was just a couple of pts. below normal.  I went back and
analyzed and saw that there  had been a steady increase since my dx.  One week
after surgery it was 57 and at highest pt. it was 116.
I started Doxycycline and had a Zometa infusion the following month at
osteoporosis prevention level.  My alkaline phosphatase levels then slowly
decreased to level close to where it was at start.  This week it was 63.  Last
month I also started a statin drug because my cholesterol was above normal--it
became high AFTER I lost weight as well as ate a 'healthy' diet and began
exercising.  My tumor markers have remained low, so far.
I have had difficulties in my spine and shoulder--supposedly a cyst and also
degenerative changes.  I hope they are nothing more than that but am a bit
uneasy because of the fact that I am supposedly at very high risk for
recurrence.  
Sorry for the long post--but, well, there is or was alot going on.  I feel that
I can't sit around and wait for something to happen or not happen and becaue of
all that was involved so am doing what I can to hopefully boost my chances for
remaining in remission.  I don't know if it will work but my 2nd opinion
oncologist teased me about being my own dr. and then asked if he could write me
any prescriptions.  I have also consulted with an advocate, a former M.D. who
had  breast cancer herself, who is also doing much of the same that I am doing.
I have no idea if it is going to work, but it helps me feel more of a sense of
control.  My goal is long term remission if not cure.
Oh, and I am in training for the Susan G. Komen 3-day Breast Cancer walk which
is taking place this November.  So far, I have walked up to 12
miles--power-walking in my spare time between work and other stuff...

Hi my name is Sharon, but everyone calls me Shaz.
I live in a town called Newmarket, near Cambridge, in the UK.
I have just turned 35.
I was diagnosed with Invasive ductal cancinoma grade 3 in Sept 2002. I then
went through 6 rounds of A/C chemo, then i ended up having a mastectomy
(right), they removed 9 nodes of which 1 was positive. The tumour was also
er+
After that i then had 3weeks of radiation.
I am now finished with my treatments, apart from having to take Tamoxifen
for the next 5yrs. I'm just hoping that i don't put on any weight from it!
When i was 2&a half, i was struck with Cancer for the 1st time, with a
tumour on my kidney(Wilms Tumour). This was promptly removed and i began my
chemo,A/C also. I then had to have Radiotherapy and some physiotherapy also.
From then on, my life had been constant appointments at my local
hospital(Addenbrookes, Cambridge, UK, for check-ups and x-rays and god knows
what else, coz i can't remember half of it(thank god!)I finally finished all
of my check-ups and was given the all clear, when i turned 18 in 1987. I had
beaten it! Well so i thought, until last year, when it came into my life yet
again.

But hey, you have to be positive and i say to myself, that if i can beat it
as a baby, then i can sure beat it now, as an adult!

All the Best,

Take care,

Shaz x

Catharine, what an interesting resume!!  An exotic dancer!  Who'd have
thought it!  My best to you for your upcoming move and whatever treatments
they are able to give you.

Jackie

LOL!

It might come ... I had lack of support from my mother and some erstwhile
friends and a daughter, two sons couldn't handle it but tried, the third son
hadn't been speaking to me for two years but my cancer transformed him and
he's back to the close, loving boy he always was before.

That reminds me of a very early post I saw when I came here and I think it
was from Catharine. The gist was that if you know life's coming to an end
why not use your credit card to go on a cruise, the debt will be absorbed by
the company when you die.

The trouble is that you might not die ... :-)

Well, not yet awhile anyway.

We should all enjoy every moment of life, that bus is just round the corner
and none of us knows if we'll be here tomorrow.

Hugs,

Mary

I know exactly what you mean.  Most of the "evidence" is the fridge
mysteriously emptying itself and the volatile nature of chocolate biscuits.
It seems to be normal.  This generation seems a lot different from when I
was that age - we were so independent - but I suppose every generation says
that.  There seems to be so little incentive to make an effort to -do-
anything these days.

They are still growing and can grow out of it though.  Mine is 22, he
dropped out of uni, (around the time his mum died, but the writing had been
on the wall for some time before that) spent a year sleeping all day and
borrowing beer money off his mates, then got a sequence of minimum-wage jobs
after I took away his house key.  Somehow when he got to 21 he realised that
if he wanted to have any sort of life, or even buy his own round of beers,
he actually had to get up and go to work on time, and for the last year had
a perfect attendance record and began paying off the worst of his debts.
This year he joined the Army and finishes his basic training in a couple of
weeks.  He is really enjoying it, putting in lots of effort, getting up at
4am, proud of his fitness and generally thriving in the system.  Admittedly
all sense of organisation evaporated when he had his first leave and we were
left waiting on the station for two hours trying to meet him because he'd
travelled by a roundabout route. (His barracks is only two hours away!)

Tim

Hi Katie:

Protocols for treating breast cancer change on a regular basis once various
study results are published.  

For example, I participated in a sentinel node biopsy study.  I understand that
this is now the norm so that the fewest number of lymph nodes can be removed.

Radiation to remaining breast tissue is the norm to eliminate cancer cells that
might be lurking in that breast after tumor removal.

Chemotheraphy is the norm for anyone with positive nodes.  Sometimes chemo is
encouraged even for women without positivie nodes.

Fianlly, radiation is now encouraged for women who've had chemo but had fewer
than 4 positive nodes.  Up until recently, it was felt that with 1-4 + nodes,
radiation wasn't necessary.  Recent studies have shown that it may affect
cancer recurrence and, therefore, long term survival.

Bottom line, your case is not a one size fits all treatment program.  All sorts
of different factors need to be evaluated.  Your surgeon, oncologist,
radiologist and etc. can help you understand the whys and wherefores.

I stongly encourage you to read Dr. Love's book or visit her website at
www.susanlovemd.org or go to your favorite bookstore and spend some time
checking out all the books on breast cancer.

Sassy

Was the chest wall recurrence within the radiation field?
I'm sure you know the stats on young women with BC, not good. Beat the
stats! What about Arimidex, are they keeping that in reserve or has the
tumor gone ERneg?

I think that's remarkable!

Mary