Eyeing that bell

A lot of cancer centers have a bell that you ring when you complete your treatment. There is a large, bronze bell that sits on the desk next to my nurse. It has a big handle that is just begging someone to pick it up and give it a ring. A I-have-beat-this-thing ring! A week from today, I should be ringing that bell. Signifying another step complete. But, I will not get my chance…yet.

Last week the plan was to have surgery and then get back to more chemo. We had decided to just do the Abraxane, and not mess with the Adriamycin. It has risks on my heart that I am not willing to take right now and I can look back 4 years and say that I am not sure it really did its job on the cancer the first time. It is supposed to be the strongest, most effective on breast cancer, but mine is still here. We will continue with my doctors in Austin, however, I think my case is being presented to a team of doctors at MD Anderson through a connection that my mom made.

Then while enjoying lunch with my man, my surgeon called today. She has been thinking….
She is very concerned that she will not be able to get all the cancer out at surgery. The original MRI in March showed the depth of the cancer was alarming. It spans from my skin through to my muscle in the chest wall. The reason we chose chemo first was to shrink it to make surgery more successful. Since recent scans revealed that the cancer did not respond, she is still concerned about the depth that the cancer extends. In a typical patient, if surgery does not remove all the cancer, plan B is to kill the cells with radiation. I may not have a plan B. I have already received a high dose of radiation and they are not sure how effective they can be with another dose. I meet with the Radiation Oncologist on Wednesday to discuss this. The surgeon and my oncologist are discussing if we move forward with the new chemo drug to see if we can shrink the cancer before surgery. I would be for this because it would at least give us a way to measure the progress. But the oncologist is worried the longer the cancer sits, the more opportunity it has to spread. My guess is that this decision will be coming toward the end of the week.

There are so many of you who are following and praying with us. We thank you so much. I love Fight4Julie Mondays and I love seeing people I don’t even know following the story. We were kicked down a little lower today, but we are still fighting.

“Cast all your anxiety on him because he cares for you.” 1 Peter 5:7

Scan results change our plans

Let’s start with the good news and move on to the more complicated stuff. Julie had a CT scan last week to look for any evidence of metastasis or spreading of the cancer. The scan came back as all clear for her torso with one area on the lungs the doctor is going to keep an eye on. He didn’t feel it warranted any concern and appeared to be stable for the last few scans. So let’s call that a praise and good news; the cancer still appears to be confined to the original location. She still has one more round of chemo (2 treatments) and is scheduled for surgery in late October to remove the tumor and cancerous skin.

Moving on to the not as good news. After surgery her doctor is recommending we talk about couple of different options. Julie will be going back for more chemotherapy after the surgery, and the strategy is identical to her first occurrence where they performed surgery, chemo, and then radiation. She will be doing all of those things again, but the options for chemo and radiation are more complicated this time. Somebody at this point is asking why is she doing more chemo? Julie’s MRI from last week showed that the tumor has not responded to the two chemo drugs she’s currently taking. The oncologist said that they would have like to have seen the cancer go away completely, which was completely possible, but hers as only shrunk 1/3. From what we have read, cancer that does not respond to chemo has a higher risk of returning.

Her doctor has given her the option of two different chemo drugs. One she’s had before, one is new, or a combination of the two. The problem for Julie is the combination drugs she recieved during her first occurence was a regimen of ACT (read more here http://chemocare.com/chemotherapy/faq/act-chemotherapy.asp). Unfortunately the one drug from the original combo, Adriamycin, is really toxic to your heart. While she could receive the drug it puts her at risk for heart failure. Each dosage would have to be monitored very carefully, checking her heart all the way. Her doctor is recommending another drug that doesn’t have the same risk, is potentially easier on her, but might not be as effective, Abraxane. The regimen for that drug is every week for 12 weeks. After the chemo regimen is done she will still have the potential for radiation therapy. The plan for this is yet to be determined and will be influenced by what the breast surgeon finds. This also has complications because she has received radiation previously and it can affect her heart and lungs.

Julie has triple negative, inflammatory breast cancer, which means there isn’t any follow up hormone therapy. That means there is nothing the doctors can do to attempt to control any recurrence of cancer, and that’s where it gets really hard. The doctors best guess is that Julie has 40-50% likelihood of recurrence in the next two years and similar statistical survival rate at 5 years. Those aren’t good numbers and I don’t want to scare everybody, but the doctors, Julie and I are obviously extremely concerned about this outcome. She will be put on a rigorous schedule of follow up visits with doctors, CT scans and blood work. There’s not much that can be done. Her oncologist has offered that if she wants to go see the country’s leading triple-negative breast cancer specialist in Dallas he will send her. (Joyce O’Shaughnessy, MD, from Baylor-Charles A. Sammons Cancer Center in Dallas, Texas). We just received this information today and we have not made any decisions in that direction.

What Julie needs more than anything is your love, support and prayers. She has been and will continue to be somewhat private about this issue, and this week has not been full of uplifting news so sometimes she doesn’t feel like sharing. We feel that she has a very solid set of doctors, they are reviewing the decisions with a local panel of cancer experts, and she is receiving treatment above the national standard. All of this will clearly continue on into next year and probably even longer, and everybody needs to be ready for a long, protracted fight. I’m happy to answer questions you might have about her treatment and how she is doing, and I hope she follows this up with her own words.