Oncology

After my genetics phone call on Wednesday, I had my first appointment with oncology on Thursday at Nebraska Cancer Specialists at Estabrook at Methodist. Mitch was allowed to attend as my health care partner. Is that a step up from life partner? Maybe he deserves a sash and badge to highlight his achievements through all this too. I’m not kidding and may have just found myself a new craft. 

First Oncology Appointment

I am not going to lie, going to the oncology waiting room was depressing. We had dressed up for the appointment, because first impressions are important and COVID really limits the opportunities to look nice. It could have been us overdressing or because my appointment was during the middle of the day, but everyone there was a good 10-30 years older than us and looked like shit. I kept looking around in disbelief that this is my new normal, these are now my peers, and I’ll soon join them in being alone at appointments fighting to survive. Thanks COVID! 

We spent over an hour at the appointment with Dr. Wells, my oncologist. Time for another science lesson for you, my dear readers! There is also a good documentary on Discovery Plus called “Sick” that has little 6-minute lessons. There is an episode on breast cancer that would explain all this too, but I know some of you are not fortunate enough to enjoy a Discovery Plus subscription and I have to be careful how many I give it out to so I’m not cut off from my addiction—so let me educate you! Pull up that carpet square and join me.

Is it HER-2 or Hormone Receptive?

There are two things that are important when it comes to breast cancer: “HER-2” status and “hormone” status. HER-2 stands for Human Epidermal Growth Factor Receptor 2. It is a protein that encourages cancer growth. The two hormones important in breast cancer are estrogen and progesterone, and can also encourage cancer growth. The way they encourage cancer growth is attaching to cells at receptor sites and telling it to multiply in a bad way (i.e., cancer). The treatment options are based on if my cancer is HER-2 and/or hormone receptive. If my cancer has none of those it’s called triple negative.

If It’s HER-2, My Treatment Is…

Dr. Wells thinks my cancer will be HER-2 negative. If this is the case, I will do a 2-part chemotherapy treatment. I will start with Adriamycin/Cyclophosphane every 2 weeks for four doses. The process will be 4–5 hours every time because they have to: 1) check labs to make sure my body can handle the chemo before it is given, 2) premedicate me to combat side effects, and then 3) infuse the actual chemo. This chemo can be really hard on the heart so I am getting a baseline echocardiogram to look at my heart on Friday. This chemo also really knocks out the immune system. I will get a drug called Neulasta which is a growth factor to help my body reproduce white blood cells to keep me safe and feel better. 

The 2nd chemo I would get is called Paclitaxel and I’d receive that weekly for 12 weeks. I would also potentially receive Carboplatin with that. I say potentially because it isn’t FDA approved yet for this cancer, but studies have shown it’s increasing the chance of the cancer going away by 8%. If I do the Paclitaxel weekly, I don’t have to take Neulasta with it. There is potential to do it every 2 weeks for four doses without the Carboplatin but that would be using the Neulasta with it. Some people really struggle with the Neulasta in regards to terrible bone pain and blood levels so it has to be put down to 12 weeks instead of four doses. Dr. Wells said there are some studies that show doing it over 12 weeks is more effective anyway, so I’ll most likely just do that (but will cross that bridge when we get there). 

If It’s HER-2 Negative & Hormone Receptive…

If my cancer is HER-2 negative and hormone receptive I could potentially qualify for a clinical trial. I would do the above chemos, but without the Carboplatin. The trial would give me a 50/50 chance of receiving a placebo or Pembrolizumab. From what I’ve read online I would also do some sort of hormone suppression, but we haven’t discussed this with Dr. Wells yet as we simply don’t know until the biopsy results come back. 

If It’s Triple Negative…

If my cancer is triple negative, does not have HER-2 or hormone receptor sites then I would do the above chemo with the addition of Keytruda every three weeks during chemo and for nine doses after a mastectomy. 

So those are my treatment options. I asked Dr. Wells if she had encountered this type of cancer and had success. She was honest and said she had only treated a handful of them because it is such a rare cancer (less than 5% of breast cancers). At first I was worried that my cancer is so rare, but then I realized it is most likely keeping everyone more interested and showing more of their colleagues, and the more eyes the better!  The chemotherapy regimen is the same as it would be for more common breast cancers, so I have faith in Dr. Wells and her ability to treat me. 

My Overall Thoughts

Overall, I really liked Dr. Wells. She said my case has already been discussed at the Tumor Board. This is a group that meets periodically to discuss treatment options for patients. Surgeons, pathology, radiology, oncology, therapy, everyone is present. She seems really invested, smart and caring. She answered all my questions, made a plan for a few more scans, pain and anxiety management, social work involvement, and therapy. 

I only had very minor complaints with Oncology so far. First off, the building is very drab. They need some HGTV to come in and brighten the place up. It is quite depressing. Throw some color on those walls. Put in a fountain. Do something to make me feel like I’m fighting and winning! Second, it is very busy. I guess cancer is what all the cool kids are doing now. It makes me nervous that I will get lost in the system, but again I think the rarity of my cancer, coupled with my young age, will keep me in the forefront of people’s brains. As always I have to be extra! 

Okay Okay, A Second Opinion It Is

Even though I am thoroughly happy with Dr. Wells and believe in her treatment plan, I am working on getting a second opinion at the Med Center (UNMC) with Dr. Reed. I called them Friday and they are working at getting all my records. Once they have them I will hear from them midweek to set up an appointment. I do not foresee changing doctors, but I know it will put a lot of people’s minds at ease, so I’ll do it for the people, you people, my warriors.