Just need to "talk"...

Hi all -

I was diagnosed with Stage III IDC (hormonally positive) in June 2006 at the age of 40. Two positive nodes. Had five months of chemo, 2 lumpectomies, 32 rads, deemed NED & then started with Femara in March 2007 as my first round of chemo through me into menopause.

Later had genetic testing but I do not have the BRCA genes. At that time the geneticists recommended that I have a bi-lateral mastectomy & prophylactic hysterectomy. I did have a hysterectomy in October 2008.

In 2006 I felt like the fact that the chemo did such a good job on my tumors that I was allowed the option of a lumpectomy, I took it as a "gift" and did the lumpectomy. Had to do a second for clean margins. Even at this time, I knew if anything ever came back, they could have both of my breast.

I took my Femara faithfully every day and did all of my follow up check ups and yearly mammograms. My latest mammogram was in the middle of November and, viola, something showed up. They took me from the mammogram directly to a diagnostic ultrasound and then we scheduled a biopsy for two days later. The first biopsy was not satisfactory for the Radiologist so we did a stereo tactic biopsy as well. When all was said and done, it was determined that I had DCIS (along the original incision line) which I also had scatterings of when I was originally diagnosed with the IDC so it was considered a recurrence, also known as a "localized failure."

A breast MRI showed ONLY the original DCIS that the biopsies reported and nothing else. A chest Xray was clear and a chest CAT scan was clear. 

On December 27 I had a bi-lateral mastectomy with expanders put in place as well for reconstruction so I'm still early in the healing process of that surgery. Probably has a lot to do with my state of mind but oh well:)

When we got the pathology back, along with the DCIS that we knew of, there was also a 2.1 cm spot of IDC. WTF???? It didn't show up on in the mammogram, or the ultrasound, not in the breast MRI, or chest CAT scan. I feel as though none of the test results matter until they can actually get their hands in the breast tissue to "explore."

Monday we have an appt. with my oncologist on Monday to see what her recommendations for add'l treatment will be, if any. Last we heard, she had not yet decided whether or not she wanted me to have chemo. Radiation will not be in the picture. Makes me feel a little better that she is "on the fence" and not feeling it mandatory at this point. We will just see what Monday brings.

So, like I said, I just need to blather along here. I am at peace with the mastectomy (not saying I'm happy about it) because I choose to go the lumpectomy path in 2006 and I feel that put me at a higher risk for recurrence. Since the IDC only showed up in pathology, I wonder if it's been there since 2006? Was it there and the Femara just kept it at bay? Or did the Femara just not do what it was intended to do? The more answers I get, the more questions I have.

I know that our dr's do the best they know to do by us. I respect them and am thankful for them. But, ultimately, at this point, all they are doing is helping us manage the cancer cells that may or may not be in our body. Then we are either subjected to more chemo or more surgery or both. As I pray for my continued healing and my husband's continued strength to deal with me:), I also pray that one day we will have definite answers to all of the unanswered questions regarding all types of cancer. That, one day, instead of a protocol of drugs & surgery that people are subjected to when diagnosed with some sort of cancer, our dr's will be able to utter the most beautiful words we will ever hear..."I've got a cure for that:)"

Sorry if I've been a bummer here. I just needed to vent. I am so thankful for this community and feel so happy to have a place to go where as we read the posts of people we've never met but care so much about,  along with our thoughts and prayers for them are the two most important words we are offered when we need a place to purge our negativity...I understand:)

Take good care of YOU!

Cheri