Long day at Stanford
Our day began by driving up to Stanford early so that we could avoid too much rush hour stress. We decided to check out breakfast at the cancer center. We shan’t be bothering with that plan again, as all the options involved eggs which I cannot eat that often. Oh Well. The coffee was good.
Our first appointment was with the surgeon. They had also scheduled an MRI, but we were not sure if we were going to stick around for it. We would only do the MRI at Stanford if we thought that I’d be seeking treatment at Stanford as they prefer the MRI be done at same location.
We immediately noticed a difference. The automatic assumption was not mastectomy. They began the conversation with the assumption that a lumpectomy was an option. Actually, the surgeon I saw specializes in nipple sparing techniques. An important comment had something to do with 10-15 years and same mortality rate for both mastectomy and lumpectomy with radiation. I’m not 100% certain how I heard, so we are asking for clarification. The idea was though, that lumpectomy, plus radiation and minimal reconstruction is a real option. When we go back up, she wants me to also consult with a plastic surgeon. So, the result could be two smaller boobs – rather than no boobs. One interesting side-effect of radiation is that the breasts don’t grow (or grow slower) – so if you gain weight you don’t gain breast. This is an issue if you have only one breast cancer, as you can then become lopsided post-surgery. With both, this wouldn’t really be an issue. Upon reflection, Scott commented that you could really tell the doctor’s passion – she was passionate about creating the best outcome for women long term – so an outcome that would make them happy with the results well after the cancer.
Throughout this process, everyone has been very clear to highlight that cancer treatment is an individual choice. They provide you with the options, and in the end you need to be the one that decides which option to take. Some of the best advice I have received is “you do not need to like all your doctors” and “choose who you want to trust, and then trust them.”
I was sent for an axillary ultrasound (ultrasound of the armpits) as that had not been done at PAMF. So far, no one has found any lymph node clinically (that is by feel), and the ultra sound is done to see more detail. The ultra sound saw nothing on the right and wasn’t determinant on the left, but there is swelling from the biopsy so nothing was clear.
We met with the oncologist, who I really like. Actually, almost immediately I liked him. I’m not sure why, but I felt that I could trust him. He examined me then went off for a bit, and when he came back he brought in the surgeon and the fellow (surgery fellow) – so I had all three doctors in the room talking to me at once (that was kind of nice). We all talked briefly because I had the MRI appointment, and 4pm was fast approaching.
In general, we don’t yet have enough information for a treatment plan (we knew that). They wanted to see the MRI results and more importantly the HER2 results. As far as everything we have seen so far, all indications are that the lymph nodes are clear (good thing). If the HER2 is positive (I would then be triple positive), then the HER2 regime would be indicated before surgery (I got a sense that this is the expected outcome if indeed I the tumor began to grown when I think it did). One benefit to doing something before surgery is the chance that the tumor might shrink. Shrinking the left tumor would make surgery easier – especially if the surgery is a lumpectomy.
If I were to be HER2 Indeterminate (not positive), there was a potential clinical trial (because even with HER2 Indeterminate, I still had some HER2; however, I didn’t qualify because of the second breast cancer). The difference would be have been the post-surgery treatment.
The day ended with an MRI. It is perhaps the oddest thing I have ever experienced. Unlike all the pictures, you are in the MRI machine on your stomach with holes for your breasts to hang down. The test took 30 minutes, and it made the oddest sounds. At one point it sounded like a fire truck was whizzing by. Other times it was clicking, and then shaking. There were whirs, honks, and other sounds that somewhat reminded me of the sounds on the container ships. Truly, it was perhaps one of the oddest experiences I’ve ever had. When the test was over, and I got up, I was struck by how sore I was. I had not realized that I spend half an hour laying down with a large portion of my body weight on the center of my chest (as my breasts where hanging) and my arms were above my head. I’m not really looking forward to future MRIs!
When we got home, we both collapsed. It was a rather exhausting day.
Although I didn’t like the initial feel at Stanford (there were a lot of sick people walking or being wheeled around), I did really like the doctors. More importantly, I felt a level of trust with the doctors that I don’t think I felt at PAMF. At PAMF the doctors are all really nice, but I wonder if they are too conservative. I think I would be happy there if I had simple breast cancer, but I don’t. What I like about PAMF is that I didn’t have to see a lot of other sick people, so I didn’t feel sick. At Stanford, there was obviously a lot more people being treated for a lot more serious disease. It makes sense, but it did make me feel for the first time that I too was sick – which given how exhausted I was when I got home … however, after a nap, and some food, I’m feeling a lot better. I’m hoping that I wake up tomorrow with more energy as I’d like to get in a decent bike ride … too much of the last two days has been spent indoors.
Sweetie pie, thanks for writing about this. Answers so many questions for me that I don’t have to ask you. Wishing you and Scott all good things. Let me know if I can do anything.
I can’t imagine how it would feel to be going through what you have in the last week Rebecca. I said the same to my sister several years ago after her diagnosis of IDC. She had a full mastectomy and is cancer free. You’ve been thrown into a life changing experience of cancer diagnosis, appointments, tests, treatment options, decision making and still have the physical and emotional energy to write. Thank you for sharing your qualitative and quantitative self with us.
Learning about the disease – Rebecca J. Hogue
Navigating the Healthcare System – Rebecca J. Hogue