This page is where to go to get the quick & dirty, latest & greatest, for those of you who don’t want to slog through my rambling memoir posts and just want to know what’s going on.
Updated February 23, 2020
EXECUTIVE SUMMARY – I often get similar questions from folks whom I’ve recently told about this cancer crap, and I know this page is kind of TL;DR, so here is a very brief status:
- I had stage 2a breast cancer, which meant it was curable. I am fine. I had to go through hell to get to “fine,” but fine it is.
- Mastectomy was done on June 20, 2016, right breast only. No, I don’t have the genetic mutation, and I’ve kept Lefty intact.
- I had one positive, bitchy little lymph node, so I did the fun-fest known as chemotherapy. My last round of chemo was on November 29, 2016.
- Radiation started just after Christmas 2016 and ran for 28 days (every day, 5 days/week), until February 7, 2017.
- I was technically cancer-free after the tumor was removed during the mastectomy. The chemo and radiation were done to decrease my chances of recurrence.
- I had my first breast reconstructive surgery on July 10, 2017, where they replaced the breast expander with a permanent implant. While they were at it, they lifted & reduced Lefty.
- My second and last reconstructive surgery was on December 11, 2017. This surgery was to do some finishing touches and add a nipple.
- Despite only having three lymph nodes removed during my mastectomy, I somehow managed to get lymphedema in my right arm. Lucky me.
- FAST FORWARD three years, and on February 21, 2020, I had lymphedema surgery that should improve things, but I may not know the full outcome for up to a year.
Ok, so for those of you who like details, here goes.
About the cancer itself:
- It is called Invasive Ductal Carcinoma, and is the most commonly diagnosed type of breast cancer.
- I have tested negative for six different gene mutations (BRCA 1/2+, CDH1, CHEK2, PTEN, and TP53). This means that my cancer was probably spontaneous (aka bad luck).
- It was only in my right breast; my left breast is clear.
- The cancer was hormone receptor positive for both estrogen and progesterone. This means that effective treatment options were available.
- It was protein receptor (HER2) negative, which means that it was slow-growing.
- The cancer was multi-centric, which means that there were multiple tumors across multiple (in my case, two) breast quadrants.
- Because it was multi-centric, a lumpectomy was not an option; instead, a full mastectomy of my right breast was necessary.
- My mastectomy was on June 20, 2016. They found 12 tumors, the largest being 1.8cm. Due to size alone, this would be considered Stage 1. However, during the surgery, they performed a sentinel lymph node biopsy, and found one positive lymph node, which upgraded my cancer to Stage 2a – see the middle drawing on the Stage 2a description and that’s me (tumor <2cm; but with cancer spread to lymph nodes).
- Due to the positive lymph node finding, I had a full body (CT) and bone scan done. The results were negative – no “distant disease” was found. This means the cancer had not metastasized, which was very good news.
About my Chemotherapy treatment:
- My chemotherapy sessions were every third Tuesday, from August 16 to November 29, 2016.
- I had a port installed in my chest to make drug administration easier; and also to make drawing my labs prior to chemo easier. The port was removed about three weeks after my last chemo session, on December 22, 2016.
- My chemo drug protocol was called “TAC” (Taxotere, Adriamycin, Cytoxan).
- The sessions varied in length depending on when we got started; usually from about 8:30am to 3pm. In general, I arrived at 8:30 to have labs drawn, met with Dr. Cancer between 9-9:30, and by around 10 was hooked up to the infusion pump (whom I named Patrick Swayze – my dance partner for the day). They started with pre-meds: Pepcid, Emend, and Aloxi. Then they started the T-A-C protocol (although it’s given in the order A-C-T).
- After the infusion, an on-body Neulasta injector was stuck to my abdomen. It administered the Neulasta about 27 hours later, which was given to increase my white blood cell count. Judging from the labs each time I started a new round of chemo, this worked pretty well.
- Every Friday after my infusion I’d go back to the clinic for a “hydration appointment,” where they’d infuse me with more anti-nausea meds (Aloxi & Pepcid), and IV fluids. After this appointment I always started to feel better.
- My hair started to fall out exactly on schedule, about 2-3 weeks after my first chemo cycle. Read all about it here.
- My work routine was to take the entire chemo week off (except for the preceding Monday), work from home during the 2nd week, and have a “normal” work week (in the office) the third week. Then do it all over again.
- My first post-chemo visit with Dr. Cancer was January 13, 2017 – about six weeks after my final round of chemo. At this appointment I received my prescription for Tamoxifen, a drug that selectively blocks reception of estrogen by cancer cells, in case any survived the chemo. I’ll probably need to take Tamoxifen for ten years.
- One point of clarification. A lot of people have asked me if the chemo “worked.” Well, before I started chemo, there was no evidence of cancer in my body. The tumors had been removed, the one positive lymph node was removed, and the CT/bone/blood scans were clear. This is all a matter of statistical survival rates; it’s a common cancer and there is a solid database of outcomes. Doing chemo increased my survival rate by roughly 10%, so we did it, even if no cancer was detected. This is all a good thing – I was diagnosed at age 45, and I plan to be around for a while. Throw the book at me.
About my Radiation therapy treatment:
- Radiation therapy uses high-energy x-rays delivered by a machine called a linear accelerator to kill cancer cells. I had this therapy to increase my survival rate by reducing the chance that my cancer will recur.
- Radiation is local (to the breast and surrounding area); not systemic like chemo. The side effects were much, much less severe – basically suburn-like skin irritation.
- Before radiation started, I had an initial consultation with my radiation oncologist, Dr. Zap, followed by two “mapping sessions” where they used CT scans, x-rays, and laser beams (very sci-fi) to line my body up with the accelerator. They marked the alignment with tiny tattoos.
- The radiation therapy treatments themselves started on December 29, 2016.
- Treatments were every day, five days a week, for 28 sessions. The sessions were short; only about ten minutes.
- My final session was on February 7, 2017. So, ski season was not ruined (hey, a girl’s got priorities…).
Somehow I got Lymphedema through all this…
- As mentioned above, during my surgery on June 20, 2016, I had a sentinal lymph node biopsy done. They removed three lymph nodes, one of which was positive, which is why I needed chemo.
- Despite the fact that so few lymph nodes were removed, on October 16, 2016, I banged my hand against something. Not very hard, but enough to think, “Oh, that’s gonna bruise.” That’s it. I did not run over it with a truck, or smash it in a door or anything. Just a little whack during an otherwise normal day.
- Within 24-48 hours, the hand had swollen up beyond what you’d normally expect for a little bump, and knowing that lymphedema is a possible side effect of a lymph node biopsy, I immediately suspected this disease.
- Initially I was told to go to my primary care doc – who knows nothing about lymphedema and failed to diagnose me. My oncologist then referred me to physical therapy, to a “certified lymphedema therapist” (CLT) who diagnosed and treated me.
- Initial treatment consisted of wrapping the fingers, hand, and forearm with special bandages 24×7, lymphatic drainage massage, and the use of a vascular pump. This brought the swelling down, and I graduated to compression garments to be worn during the day.
- My ongoing maintenance includes compression garments, use of a vascular pump that I have here at home, and regular manual lymphatic drainage massage. I’m still learning about how to manage this disease.
- Fast forward 3 years, and I elected to have surgery on the arm. Surgery was on February 21, 2020. Two procedures were performed: a lymph node transfer (nodes from my clavicle were transplanted to the axilla), and multiple lymphaticovenous bypass anastomoses (wherein my lymphatic channels were connected to the venous system to improve lymphatic flow). It will take several months to assess the outcome. This is not curative but should reduce the swelling at least somewhat.
Regarding breast reconstruction:
I have chosen to have reconstructive surgery, and am taking advantage of the opportunity to reduce/lift my left (unaffected) breast as well. Hence the name of the blog: “Project Perky!” This meant a total of three surgeries:
- Surgery #1 was the mastectomy itself, which took place on June 20, 2016. During this surgery, they inserted a breast expander in place. Over the course of several weeks after the surgery, saline was injected into the expander until it reached the desired size, leaving room for it to shrink during radiation.
- Surgery #2, done on July 10, 2017, was to replace the expander with an implant, and perform a reduction/lift of Lefty.
- Surgery #3 was done on December 11, 2017. The reason it took so long after #2 was that it was not a very urgent surgery, so it was hard to get onto Dr. FixIt’s schedule. The surgery consisted of transferring fat from my abdomen (yeah!) to around the implant. Since all breast tissue was removed during the mastectomy, the breast was just a sack with an implant – you could feel the edges of the implant and it looked less natural. The fat transfer improved this. He also formed a nipple out of the surrounding skin (which required a pre-op procedure about two weeks prior), and an areola out of a skin graft from elsewhere on my body.