I was diagnosed last March after a supposed normal mammogram 9 months earlier.  At the time I was so naive about breast cancer – I thought you either had it or didn't.  I did not know there were 10 or so different kinds and so many variations in each.  I had yearly mammograms and did self-checks .

After the above mammogram I felt a hardened area, almost above my right breast.  I asked  my ob-gyn dr. about it – and he commented that my mammogram had been normal and he wasn't concerned. I asked another ob-gyn to check it while I was at an appt for something unrelated.  He didn't seem to be concerned.

When I was checking myself I was looking for pea-sized or round lumps.  This felt like a hardened muscle.9 mos. after that mammogram ,  I experienced pain in that breast (reminded me of a mastitis infection that I had 15 years earlier while nursing my youngest child).  10 days after I felt the pain, I saw a change in my nipple.  This was late on a night before I was leaving for an out-of-town conference and would not be back until the weekend a couple of days later.

I had another mammogram on the following Monday – which was highly suspicious of malignancy.  I was able to see a surgeon that day who did a core biopsy on the hardened area almost above my breast that I had asked 2 ob- gyn's about.  I had results the next day – invasive lobular carcinoma.  I was scheduled for surgery a few weeks later.

I asked about seeing an oncologist – and was told they did not see you until after surgery.  I got a few 2nd opinions re dx and reconstruction.  All were basically the same. I had a bilateral mastectomy 3.5 weeks after dx .  I chose that option because of a bad family hx and the fact that lobular was most likely type to appear on the other side. The pathology report indicated that I had 2 types of cancer going on – DCIS (with comedo necrosis) and invasive lobular.

However, I also had a separate tumor in the nipple with dermal lymphatics .  None of the surgeons had picked up on that – thought the main tumor was pulling the nipple.

My oncologist believes that I have a component of inflammatory breast cancer as well.  I had 9 positive nodes, lymphovascular invasion, am ER+ and HER 2+

Because of my family hx , I did all the 'right' things. (My mom was same age at time of dx (50), her half-sister was 45.  She had one cousin who died at the age of 28 from breast cancer whose brother died of Hodgkins and mother (my mom's maternal aunt) died in her 40's.  Another of my mom's first cousins (also a first cousin to above cousin) died at 31 from b.c .  Her mom (sister of other aunt) died in her 60's of liver cancer – but in retrospect, there is very good chance it was b.c . that metastasized to liver.

There was another male  first cousin (same family) who died in his 40's of breast cancer.  Then there was my dad's mom – who also died in her 40's from breast cancer).  However, because of my ignorance and either the ignorance or neglect of doctors, it didn't help me get a timely diagnosis.

As I said, I did all the 'right' stuff (including nursing 3 children for a combined total of more than 4 years) – and didn't want to be paranoid about it.  BTW, I was tested for the gene – was negative, although all the genes  for b.c . have probably not yet been identified.

Excuse the detailed story – but because of the above, I want others to know:

– You don't have to have a pea-sized "lump" for it to be breast cancer. Women need to know about the different kinds of breast
cancer.

– Doctors also need to know more about the different kinds – especially inflammatory b.c .

– Women should be suspicious of any change, bump, or mass found anywhere near their breasts – not just in the breast itself.

– Once diagnosed, women should learn and understand as much as they can about breast cancer – to help them have more control and make more informed choices.

– Women should learn and understand about all the treatment options – before they get breast cancer.  It's hard to make a decision under stress and when you lack information and understanding.

– Women should be able to be educated about all options and choices – including seeing actual prostheses/photos depicting results of different surgeries – before they decide on their treatment option.

I hope some of this is helpful.  Best of luck – hope all goes well.  Take care. Since my surgery (bilateral mastectomy with clear margins, I think (one was .7 mm) – I have had 4 AC, 5 weeks radiation, 2 Taxol and Herceptin, 2 Taxotere and Herceptin, and weekly Herceptin (to be taken for one year) since I started it last fall.