Family Time, Chicago, and Potential Chemo?

The next thing on my agenda after we got home was to visit City of Hope on Thursday for some appointments. I was supposed to have a CT Scan of my abdomen and I was to meet with my medical oncologist for the first time. Well….the CT scan situation was a cluster, lol! My occupational therapist had told me that due to the risk of lymphedema since they removed some of my sentinel nodes during the mastectomies, I should not have anything injected into or drawn out of either arm, like drawing blood for labs or getting any shots. When I went for the labs to be done and for the IV to be inserted for the contrast, I let them know what he said, and they said there was no way for me to get the CT scan without access to one of my arms. Without knowing what I should do, we opted to wait on the CT scan until my doctors could confer. The purpose of the CT scan is for my plastic surgeon to get a good view of the blood vessels in my abdomen to make sure I am a good candidate for the DIEP flap reconstruction.

Since I was unable to do the CT scan, I grabbed some breakfast and waited on it to be time for my appointment with the medical oncologist. You, like me, may be wondering why I have not yet seen a medical oncologist up to this point. Your guess would be as good as mine to be honest. I believe it may have something to do with the fact that I did not start my journey from the beginning with City of Hope, but transferred to them after being diagnosed by my hometown breast health office. The medical oncologist was very nice and personable, and was very careful to explain things to me in a way that was easy for me to understand. From what I gathered, she is concerned that I had a different cancer in each breast at 40 years old without family history or genetic predisposition that we are aware of. She went over the pathology results from the tissue that was removed during the bilateral mastectomy with me, and said that there is an additional test that she would like to run on the malignant tissue that was removed. This test called Oncotype can help her to get an idea as to whether chemotherapy would be beneficial for me to do along with the hormone therapy that is recommended for estrogen receptor positive tumors. I believe it tests the tumor for 21 different genes which can give the doctor some insight into the cancer itself to know better the risks or likelihood of the cancer returning or spreading. She also talked with me a little about the hormone therapy. I had just assumed that she would want me to take a hormone blocker like Tamoxifen for 5 years, but she actually said that she may want to consider forcing me into early menopause. I was definitely surprised to hear these possibilities from her. I had incorrectly assumed that since all of the cancer was removed by way of the bilateral mastectomy and with the sentinel nodes all being negative, I was good to go, cancer-free, no more treatment necessary. That unfortunately may not be the case. She did explain that if I do have to do chemotherapy, it will be 4 rounds that are 3 weeks apart. She said that I may have a few “blah” days, but that it really won’t be that bad at all. I expressed some concern to her regarding the trip to Italy that I will be taking with our community wind ensemble in June, but she reassured me that we could schedule the sessions around that, and that I will be not be feeling crappy on the trip. I had really thought that all I had left was to get the reconstruction and keep living my best life, but it may be a little more complicated than that.

All that to say that I can handle whatever may come. I will do whatever it takes to never hear that I have cancer again. She said that the results for the Oncotype test will take about 2-3 weeks, so if I do have to start chemotherapy, I will do so during my birthday week. The good news is that I should be finished with that in exactly the right amount of time to get the reconstruction done when I wanted to.

I was able to have the CT scan the following day. My doctors conferred and determined that the risk of lymphedema from so few sentinel nodes being removed did not outweigh the benefit of having the scan. I will say, that was a strange experience. First of all, no one verbally told me not to eat or drink anything. My lab appointment was at 8am and the scan was scheduled for 9am. I figured I would grab breakfast in between. Lo and behold I am sitting in the waiting room waiting for them to call me back, and I expand the details of the appointment in the myChart app. I wasn’t supposed to eat?! Oops! What do I do now? I went up to the person at the front desk and let her know what I’d done. She called to the tech who said I should be fine, it is just a precaution because the contrast can make some people nauseous. Um, that was exactly the wrong thing to say to me! (I might just have a touch of emetophobia). We decided that I would just hang out in the lobby for a while and come back to do the scan at least 2 hours after I had eaten. I had never had a CT scan before, and that contrast feels so weird when it is released into the body! I felt heat come up the back of my throat and go straight down to my nether region! 😂 I have never felt anything like that in my life, but at least I didn’t get nauseous!

So here is the current timeline for next steps in my journey:

My next appointment with the plastic surgeon is on April 11th. At that appointment he will let me know if the CT scan results say that I can do the DIEP flap reconstruction so that we can officially get it on the books. He will also take a look at how much I have healed to be sure we are still on track. I think I may ask him if I can get another fill into the tissue expanders, because I feel that my size is still a little off.

About a week after that appointment, I should hear from the oncologist about my Oncotype test results to know if I will need to do chemo. If so, it looks like that will begin the week of April 21st.

Thanks for all the love and support, and I will keep you updated!

Rachel