Lots to update, but the most important thing is that since my surgery last month, my status is now N.E.D. - no evidence of disease! This means that the surgeon removed all the cancerous cells that could be seen on imaging (the primary tumor, a tiny satellite tumor, and 2 cancerous lymph nodes). The term essentially means the same thing as complete remission or complete response. Doctors generally hesitate to use the word "cured" because they never know if microscopic cells are still present and the cancer may return, but to the best of their knowledge, I am currently cancer-free.
And yet, my treatment is not over. As I said in my last post, the surgeon removed a few lymph nodes during surgery, and then a few more. With two positive nodes, she wanted to ensure it would be all out and no lingering cancer cells would continue traveling through my lymph system to other areas of my body. She took out a total of 17 lymph nodes, which means I am at life-long risk of lymphedema (swelling in my left arm/side/breast) and need some physical therapy to loosen up the tightness in my arm and armpit (called cording or axillary web syndrome). Lymphedema isn't entirely preventable, but there are things I can do to keep the risk low, and if I do develop it, physical therapy can help lessen any swelling. For now, I'll visit physical therapy weekly until treatment is over and I have gained full mobility again.
I also went for my radiation planning session today, during which I had CT scans done, received 5 small tattoos to mark the radiation area, and learned breath hold techniques to protect my heart during radiation. The radiation oncologist will now map out my treatment and I'll go back on the 24th for a test run. Actual radiation will begin on the 25th for 30 sessions (every weekday for 6 weeks). Because I had a lumpectomy rather than mastectomy, radiation will zap any microscopic cancer or pre-cancer cells that might be lingering in the area unseen. The radiation will also cover the remaining lymph nodes in my armpit, near my collarbone, and in the center of the chest to again ensure there's nothing microscopic left.
By early August, my active treatment will be over. I'll begin taking hormone therapy pills to reduce the risk of recurrence and will visit my oncologist every 6 months for monitoring. There is a light at the end of the tunnel!
Last week I had an MRI to assess the tumor and lymph nodes post-chemo/pre-surgery. I spoke with my surgeon this morning, and the results are GOOD!
She said comparing my initial MRI with this one is "actually quite shocking" and that "the tumor shrunk up beautifully." On the initial MRI, the mass measured 3.2 x 2.6 x 2.6cm and now it is described as a "non mass enhancement" that measures 1.9 x 0.9 x 2.0cm. I like those numbers!
The best part is that the initial MRI also showed a swollen lymph node 2.7 x 2.0 x 1.7cm which was biopsied and found cancerous, plus two other small lymph nodes that appeared abnormal. These lymph nodes are no longer visible on the MRI, which means the chemo did exactly what we hoped it would!
We'll move ahead with a lumpectomy and sentinel node dissection on May 10th, and the hope based on this MRI is that the lymph nodes they remove will not have any microscopic cancer cells left. If they do, more lymph nodes will be removed, but the MRI gives me hope that I won't need any further surgery. Celebrating small victories!
This part of my story is a big one, friends! On April 5, 2019 I received my LAST round of chemo and got to ring the bell in the cancer center. I thought ringing the bell was kind of cheesy and silly... until I did it. And all the nurses cheered. And I got a little choked up and teary eyed. This didn't mark the end of my treatment, but any means. Surgery and radiation would continue into July and hormone therapy for the next 5+ years. But finishing this big, scary milestone of treatment which had affected by entire body systematically feels pretty. darn. awesome.
Chris was able to take the day off and come with me, which I was VERY grateful for as it was the longest day of treatment thus far. It was the first time I had a big gap between seeing the oncologist and starting chemo, so we celebrated the milestone by walking to a local bagel shop for lunch. Thankfully, my veins were cooperative for the IV (8 rounds of chemo with no port!! A big deal!) However, I had a reaction to the Taxol chemo which slowed things down. Many people have allergic reactions to Taxol, and I had a minor one with the 2nd round exhibiting as back pain. Since then, each time they taper my dosage, starting very low and increasing the dosage after 5 minutes, then again, then again. Yesterday, the nurse misread my chart and gave me the full dose right off the back. After just a couple minutes, I had sudden chest tightness, shortness of breath, and overheating with flushing. It was terrifying! I thought I might be having a heart attack or something crazy.
They immediately stopped the infusion and rushed to check all my vitals. So many nurses all of a sudden! To be safe, they gave me a half hour to calm down, and then started the infusion again, tapering it slowly like they should have initially. Thankfully, the rest of the treatment was uneventful. But it extended my 3 hour infusion to 4 (after the 3 hours of waiting between my oncology appointment and the infusion.) Long. day. With a broken TV in my infusion room. So glad to be done with all that.
So what's next?
Over the next few weeks I would have another breast MRI to reassess the size of the remaining tumor (which physical exams suggest is substantially reduced) and to assess the lymph node involvement (I had one previously confirmed by biopsy and two additional abnormal spots on MRI). Aside from shrinking the tumor, the primary goal with chemo has been to get the cancer out of the lymph nodes so I need less nodes removed. There's no way to know for sure until surgery if any are still cancer positive, but the MRI may give a hint.
I also scheduled pre-surgery bloodwork, an EKG to check my heart health, and SAVI seed placement. The SAVI seed is a tiny radioactive marker to be placed with ultrasound guided injection about a week before surgery. This helps the surgeon locate the tumor and potentially involved lymph nodes using a wand outside the body so she can make the incisions in the best possible places and easily find remove the correct tissue. (Yay science! What an awesome invention.) The tumor and lymph node were also marked with metal clips during my biospies, for the surgeon to see once surgery begins.
My surgery was scheduled for Friday, May 10 with a lumpectomy and sentinel lymph node dissection. Once I'm asleep, they will make the incisions and then inject a blue dye and radioactive tracer into the tumor to follow the lymphatic pathways. Using these tracers, the surgeon will remove the first 3 lymph nodes connecting the breast tissue to the rest of my lymph nodes. By removing these, we cut off the pathway for any cancer to travel from that breast to the rest of my body. If the previously biopsied lymph node is not one of these 3, she will remove that also. They will be immediately sent to pathology while the surgeon continues with my lumpectomy, removing the tumor and surrounding tissue to ensure "clean margins" (i.e. no more cancer!) If pathology finds any remaining active cancer cells in the removed lymph nodes, the surgeon will proceed with an axillary node dissection, meaning she'll remove all the lymph nodes from my armpit, ensuring that there is no possibility of remaining cancer cells that could spread. I'm super grateful that pathology can do this assessment on the spot, as it makes it far less likely they would need to go back in for a second surgery to remove more tissue.
We're praying that I don't need more than a handful of lymph nodes removed, as taking them all increases my risk of swelling and/or numbness in that arm and for future injuries, even simple cuts, in that arm or hand to become infected. But whatever we need to do to get rid of the cancer, we'll do. If we are able to go for the more conservative surgery, I'll come home the same day. If I need the full axillary node dissection, I will have a drain installed and will need to stay at the hospital overnight.
About 4 weeks after surgery, I will begin radiation. This could last 3-6 weeks, and I won't know until after surgery. The more lymph nodes involved, the more radiation I will receive.
I'm about halfway through my active treatment, and ready to move onto this next phase. Especially since surgery is what will be curative. So even though treatment won't be over yet, I will technically be CANCER FREE! Soon!
After avoiding reality for several days, I finally made some phone calls. I pulled out a brand new journal to use for cancer notes (when you're a writer, lots of people gift you journals. Also, something about being organized helps me feel like I'm in control). I wrote down my basic diagnosis information, and then scheduled appointments with surgeons at three hospitals. In hindsight, this was probably excessive, but since I live in New Jersey, I wanted to consider a hospital closer to home than Penn, where my diagnostic testing was done. And the top hospital in NJ I was interested in wasn't able to give me an appointment for about three weeks, and not at my preferred location. So I tried a third.
My first appointment was at Penn Medicine with Dr. Alina Mateo. I should have just stopped after that. Everything about the appointment was as good as one could hope for. Surgical Oncology at the Pennsylvania Hospital location is on the top floor of a glass high-rise, and the view from the waiting room was the best I've seen in Philadelphia. The decor was warm, modern, and simple. If it's possible to feel comfortable while waiting to meet with a cancer surgeon, this is the place.
Dr. Mateo met us in the exam room, my husband and I. She was young, probably close to my age, and kind. We talked for a few minutes and she gave me a quick physical exam before inviting me to get dressed and meet her in her office. I can't express how much I appreciated that. Sitting in an office with my husband, across a desk from a surgeon, having a conversation like a person rather than in a gown in a sterile exam room like a patient.
As she explained my diagnosis and her recommended treatment, she drew on a diagram and wrote out some simple notes for us. She walked us through lumpectomy vs. mastectomy, axillary lymph node dissection vs. sentinel lymph node dissection, and neoadjuvant chemo vs. adjuvant chemo. She recommended an oncologist to discuss chemo, listed the additional tests she would order if we decided to move forward with treatment at Penn, and answered our questions.
The most important thing she did for me was make me feel like I had a choice. She was clear about her recommendations, but deciding between breast conservation surgery (lumpectomy, which she suggested) and a mastectomy was up to me. Having chemo first (her recommendation) or later or at all was up to me. Sticking with Penn or going elsewhere was up to me. She explained why she recommended the course of treatment she did, but presented the options. Cancer is such a big, scary, out of control, unexpected thing. Any element of choice, I was grateful for.
My husband accompanied me to meet a second surgeon, at a hospital in New Jersey. We thought it would be closer to home, but it actually took about the same amount of time to get there. Walking in, the building felt like a hospital, you know? I kind of hate hospitals. That warm, comfortable, welcoming feeling with the great view of the city was nowhere to be found.
But you can't pick a surgeon based on the building alone, so I tried my best to keep an open mind. We had researched this surgeon online and were impressed by her experience and expertise. She seemed to be one of the top breast cancer surgeons in the area. It was clear my husband was leaning in this direction--in state, slightly older, more experienced surgeon. She met us in the exam room, my husband in a chair and me on the exam table in a hospital gown. I wish I could explain why I felt so tongue tied by her presence, but I can't. It was like a lump in my throat prevented me from asking questions, from expressing myself freely.
Her recommended treatment plan was roughly the same as the one Dr. Mateo outlined, though had that appointment been first, I would have been confused and overwhelmed without the diagrams and simple explanations. The biggest difference, the deal-breaker for me, was that while this surgeon mentioned the options of lumpectomy vs. mastectomy, it was clear breast conservation was not her priority. She said that many women choose mastectomy so they don't have to worry about recurrence. She mentioned DIEP flap reconstruction, where the plastic surgeon grafts fat from another part of your body and uses it to reconstruct the breast. And I will never forget the way she said this:
DIEP flap construction is very popular, so you get a nice little tummy tuck as a bonus.
A bonus? More invasive surgery that involves removing my breast, slicing into my abdominal muscles, with multiple surgical drains and extended recovery time, and you want to sell it to me as a tummy tuck?
When we got to the parking lot, my husband expressed he thought she was great and I broke down crying. No way I was ever going back in that building or to that doctor again. No way.
I ended up cancelling my third appointment and staying with Penn Medicine. I felt comfortable with Dr. Mateo, I had been treated with care throughout my diagnosis, and the additional testing they recommended was extensive, which made me feel like they were doing their due diligence to ensure they didn't miss anything. I'm sure either of the other surgeons I researched would have done a fine job. But when you're spending as much time with a doctor as cancer treatment requires, with years of follow-up appointments, there are factors other than their resume worth considering, and the care I received from everyone at Penn, not just medical care, but care, was unmatched.
Breast cancer survivor.