Still Ned!

Thanks everyone for all the congrats and well wishes!  I really appreciate it and want to wish the best for each and every one of you also.  Those of you on or starting Zometa, may you have easy infusions, minimal SE's and GREAT results!

PRV, when I had my first BC diagnosis in 2000 at age 47 (Stage 2 IDC, SNB with micromets) I had a lumpectomy, AC/Taxol chemo (4 rounds of AC every 3 weeks and then 4 rounds of Taxol every 3 weeks) I was then on Tamoxifen for 1.5 years and stopped all hormonals in 2003.  We didn't know it then, but I already had the lobular cancer growing in the other breast at the same time, so it was no doubt slowed down by the chemo and Tamoxifen. Even though I continued to be examined every 6 months and have annual mammograms, my lobular cancer was not found until the Fall of 2005.  I had just celebrated my 5 years cancer free from the IDC 3 months earlier. The lobular cancer was only found by manual palpation after it had grown to over 5cm.  The mammogram I had just 10 minutes earlier said everything was fine! 

This new primary BC in the opposite breast was much more locally advanced than my previous IDC.  I decided to have bilateral mastectomy without reconstruction due to my BC history. I had a total axillary dissection on the left and after we found out the positive nodal count my oncologist wanted to be very aggressive with my treatments. 

I was given IV Taxotere chemo every 3 weeks for 6 rounds.  I was also started on Xeloda, an oral chemo, at the same time, 6 pills a day, 2 weeks on, 1 week off until I developed hand/foot syndrome and lymphedema.  My onc then reduced my Xeloda to 1 week on and 1 week off.  I continued to take a much lower dose of Xeloda during my 6 weeks of 3 field radiation (chest wall, full axilla and supraclavicular area) I started taking daily Aromasin as soon as I finished chemo and prior to radiation. 

I then started on the IV Zometa infusions one month after completing radiation. Just now completed the 3 years of Zometa and will find out next week if my oncologist has any other plans up her sleeve!  Possibly, may try a different bisphosphonate if she feels it would be beneficial without increasing the risk of ONJ.  I am sure I will continue on Aromasin as long as I am still NED. Hopefully, I can move to annual scans now instead of every 6 months also.  I know that the other shoe could drop anytime and that there is no "magic bullet" but so far I am very happy that we seem to be keeping this disease under control!

Wow!  Thanks again to everyone for all the good wishes and kind thoughts! 

LauraGTO -  Laura my breasts had always been very dense and lumpy.  I had my first mammogram at age 36 and was biopsied for suspicious areas in the right breast at age 39.  The biopsies came back negative but it was that same location that ultimately became my first breast cancer (IDC) 8 years later in 2000.

Because Lobular cancer does not form well defined nodular tumors, but is more of a thickening or "pancake" type growth, we were never able to distinguish my lobular cancer in the left breast from the general density and lumpiness I already had.  Unfortunately, mammograms miss up to 50% of lobular cancers and that was what happened in my case.

It was really just a fluke that my lobular was finally detected when it was.  There was a new physicians assistant who came in to examine me prior to my regular followup check by my surgeon.  The PA did a very thorough exam of both breasts and paid particular attention to the left one when she asked me "have you noticed this thickened area around your nipple?"  I had not really noticed anything different but could feel what she was talking about once she pointed it out to me.  My surgeon saw me a few minutes later and thought it felt like a fatty lipoma but wanted to double check with ultrasound.

The ultrasound also seemed to indicate only a fatty lipoma with no obvious indications of any more serious findings.  My surgeon and I both agreed we needed to know for sure though, so I had an excisional biopsy in which a 4 cm mass was removed.  The 4 cm "fatty lipoma" turned out to be a 4cm ILC tumor with another residual 1.1cm tumor mass removed when I had my bilateral mastectomy.

Both my surgeon and oncologist were surprised at the findings.  When I had my first diagnosis in 2000, breast MRI was not being used extensively at that time. Today, if a patient is at high risk for breast cancer, has a history of breast cancer or very difficult to read breasts due to dense tissue, a breast MRI would definitely be advised if nothing is detected by mammogram or ultrasound.