Lisa made contact with me and has been happy to tell her story, from her Breast cancer diagnosis, treatment and start of Lymphedema, through to having a Lymph Node Transfer and Lymphatic Bypass this month with Dr Chang. Surgery for Lymphedema of the arm is more advanced than that for the leg and from what I hear there are some good results… I am happy to share this personal account, which I have divided into three parts… Welcome and thank you Lisa..
First of all, I must say, we’re our own best advocates.
I found the tumor
through my regular self-exam.
…and that’s why I’m still here to tell my story!
Never since I turned 40 have I skipped a mammogram, however I changed dramatically providers. The biggest change was moving from Munich/Germany to the Seattle area in May 2000. Suddenly, I had to look for all new health care providers, but I was lucky to find early on a really good general physician. This is where the rainbow comes down and the pot of gold is right there. She’s good.
Two years before the diagnosis, – I just turned 50, I started telling every time each of the RNs who’s in charge of the mammogram to please look very closely, and about my fear something deep in my left breast wasn’t right. I was repeatedly waved off as “overly sensitive” and having “lumpy breasts” and if there would be something, it would not hurt. Their opinion didn’t waver a bit when I wrote down on the paper form and told them that my grandmother died from breast cancer at the age of 75, my mom just went through her own breast cancer at the age of 76 (what I didn’t know, my mom’s younger sister, – my aunt, was just a year out of her breast cancer surgery, with lymphedema in her arm! My mom never told me until I was hit).
I kept doing my self-exams and stayed alert.
In February 2008, I told my GP during the yearly routine exam “that very deep down in my left breast, something isn’t right”, and she immediately sent me to a diagnostic mammogram (which ended up to be a biopsy under ultrasound). The area they punctuated with the straw needle revealed a few calcifications and I was sent me home taped up with a flower and pity smile. But I still new IT was not right. At least, once I have had a biopsy, the follow-ups are ½ yearly. The next was scheduled for November 8, 2008, just after my first fun trip to the International Quilt Festival in Houston, TX.
From there, it became a whirlwind of appointments.
The diagnostic mammogram and ultrasound showed and unclear situation in the area I described for such a long time. The new radiologist on duty that day was not satisfied, instead she scheduled me for another straw needle biopsy on November 10. That’s when they found not one, but two tumors. They nested right up on the chest wall and bone, and where quite big as the 3rd biopsy under an MRI a few days later revealed. The area close to the chest bone is hard to catch on a mammogram, pure physicality. But what’s shocking, with my history and telling, I would have been eligible for an MRI much earlier, already instead the first straw needle biopsy. She just shook her head in disbelieve why it wasn’t found earlier.
Stage 2+ ductal invasive breast cancer, estrogen receptive.
November 10, 2008.
I was 52 ½, pre-menopausal.
After the diagnosis, everything went quickly towards surgery. The tumors were clean-edged and not spread out, so a lumpectomy was performed on December 19th, 2008. The margins came back clear. But 4 sentinel lymph nodes were removed and tested, 2 came back positive, 2 negative. The surgical oncologist recommended STRONGLY undergoing an auxiliary dissection, which was done January 9, 2009.
Before surgery, I tried to sponge up as much about Lymphedema off the internet as I could, so we did have a lively discussion about it. He did not hide that Lymphedema is a possible outcome of the lymph node removal, although he claimed statistically only 19% of all patients would develop it (I am sure, this number is highly underrated due to non-diagnosis of LE. And this is still almost one of every 5 surgeries). I was very wary of this possibility. From the beginning on, I had a gut feeling “I’ll be one of them”, so I tried to wind my way out of this surgery, but the pragmatic doctor, my husband and lastly even I got convinced the last thing we ever want to see is returning cancer.
All surgeries were outpatient procedures.
NOTE: A study published in the NY Times, June 7, 2010 shows there is next to no difference in return rate of cancer to patients who had a lumpectomy and whether an Axillary LN dissection was executed or not. So it did not make me any safer, instead it was actually in vain.