Kaye here has had lobular  cancer with no reconstruction but bilateral
mastectomies.
Sorry to hear that your surgeon missed your tumor, I had a tram flap in 1997
and if I had surgery on the other side I would  opt for a saline implant.
Can you tell us any more about yourself , age over all health?

<<  I have lobular cancer. Has anyone had a similar experience?

Hi Anna, some of my experience has been similar to yours.  I also had mainly
invasive lobular cancer.  I was dx'd 3+ years ago, 9 mos. after a supposed
normal mammogram.  I won't go into the details re the delay in dx---I had felt
a mass within day(s) of the last mammo.  By the time I was dx'd the cancer was
aggressive as well as invasive.  I opted for a bilateral mastectomy because of
a bad family history and because lobular is the type most likely to recur in
the opposite breast.  One research article I read stated that in cases of
lobular, the breasts could be looked at as a 'single organ with two mouths.'
Lobular generally grows in sheets rather than in tumor form but can form a
thickened mass as well.
My surgeon was supportive of my decision for a bilateral and said--only after
my decision was firm--that she would opt for the same under similar
circumstances based on her then 19+ years of experience as a surgeon.
One thing I asked before surgery--did she think it possible that there was any
remote possibility that there might be undetected breast cancer in the 'normal'
breast based on the fact that by the time the cancer is discovered it has been
growing the past 5 to 10 years and if that is the case the other routine
mammograms had failed to pick up the cancer on the malignant side.  She said
that was a possibility.
Although the other side did not show any detectable malignant cells I am not at
all sorry I had the bilateral.  I don't have the imbalance problem reported by
others who have had a single mastectomy.  In addition--the biopsy done showed
that I had a 2.5 cm invasive lobular tumor.  After surgery, the pathologist
found high grade DCIS and a separate tumor in the nipple with dermal lymphatics
(a rare presentation of inflammatory breast cancer).  I also had 9 of 12
positive lymph nodes, was Her2+, had extensive lymphovascular invasion, and the
only 'good' thing was that I was also ER+
I am glad I had the bilateral mastectomy.  That has been the least of anything
I have had to deal with.  It healed quickly.  I had wanted immediate
reconstruction but that was denied.  Although I was quite angry at the time, I
got over it as I learned what cancer/breast cancer was all about.  I use
prostheses and basically not having breasts has become a non-issue.
Based on my personal experience and my knowledge and understanding of lobular
if you asked for my recommendation--I would tell you that if it were me I would
go ahead with the bilateral mastectomy.  One of my colleagues also dx'd with
lobular had a single mastectomy with a saline implant--after 2 unsuccessful
lumpectomies.  Her biggest fear is recurrence.  As far as the surgery, she
wished she had the other side done--doesn't like the feeling of assymetry or
didn't--and her implant hardened after she was bit by her horse.  Before her
mastectomy she asked herself several times--what was more important--her life
or her breast.
We were together the weekend before I saw anyone for treatment.  I had shown my
ob-gyn the mass a few weeks after my last mammo and he flippantly reminded me
that the mammo had been normal--making me feel really embarrassed for even
showing him.  Then 9 months later my nipple began changing--the night before I
was leaving mid-week for an out-of-town conference.  The upcoming weekend I
attended a second conference which the above colleague also was.  In fact she
helped me through that very difficult weekend and shared her thoughts and
experiences--which also helped solidify my decision.
Just thinking about your situation--the fact that a 5 cm tumor was missed is
not unusual for lobular.  Again it grows in sheets.  It is true that chemo may
take care of any microscopic cells that still remain, though.  I am guessing
that you have not had any lymph node testing yet.
I am not sure I should be giving any advice since my case was definately not
the 'norm' in terms of all the rare factors that I had going on.  However,
knowing what I do know about breast cancer now, and even if I didn't have as
much going on, I probably would still opt for the bilateral mastectomy.
However, we all come to this decision from different backgrounds and
perspectives.  I was dx'd at age 50--same age as my mom was dx'd.  (She
survived 6 years).  I grew up watching my mom's relatives die of cancer at
young ages--mainly breast cancer.  I never met my dad's mom who died when he
was 13 from breast cancer.  So  have the surgeon leave extra skin for
reconstruction should I ever want it--and I thought I did at one time.
However, as I mentioned that part has become a non-issue for me.  I might have
felt differently, though, had I been younger and/or single.  I have been
married to the same fabulous guy for almost 28 years.
My best thoughts are with you on whatever you decide.  If you have any ?'s just
ask.  Take care and {{{Hugs}}}    

Hi Anna,
I have had a similar experience to Kaye. I was diagnosed with a small
infiltrating ducatal cancer back in 2000. No lymph node involvement.
Lumpectomy and radiation. Last fall I stated to feel a thickening in the
same breast. Mammograms and ultrasounds were clear except that the tissue
was denser. My surgeon thought it was radiation induced fibrosis. Said he
would see me again in 3 months and do another mammo and U/S in 6 months. I
never made it to the 6 month mammo because I started to get quite concerned
because my nipple started to invert. He did a core biopsy and it was cancer.
Because I had had radiation it had to be a mastectomy. June 2004. Which was
just as well because the tumor was 10cm x 8cm x 3cm. invasive ductal,
invasive lobular, DCIS and skin invasion. They had no idea from the mammo or
U/S that it was there at all. because of my family history and the fact that
I did not want to be lopsided I opted for a bilateral mastectomy. The other
breast was found to be full of atypical hyperplasia so my surgeon thinks I
made the right decision. I have healed up pretty good now. The surgery was
not  difficult to get over. See the oncologist on Tuesday for the next round
of the battle.
Hope all goes well for you, if I can be of any help please feel free to ask.
Keep well,
Liz.