Doctors, Doctors, and More Doctors

Going backwards...

Consult #1: Surgeon - Dr. Guiroy

Surgeon asks me what I know about what I have and I rattle off: IDC, grade 3, lump and lymph node in my armpit tested positive, calcification is assumed benign, HER2+, HR-. She looked at me and said, “Are you a scientist?” We all chuckled. So I had to explain my background. I guess not everyone is that aware of their cancer by their first consult? 

She asked what I was hoping to happen. I told her I was hoping to avoid a mastectomy and, of course, chemo and radiation. She explained that a mastectomy is definitely not needed. She said the MRI had found that my lump was largest at 2.5 cm. I asked if that was considered small, medium, large? She kind of hem’d and ha’d and I said, “medium?” She said, “yeah.” I assume I’m more on the “small-medium” scale. 

She explained that I would do treatment before surgery so I wouldn’t see her again for at least 6 months. Treatment pre-surgery (called neoadjuvant) has a chance of causing the tumor and lymph nodes to shrink (side note: this was the first time I really realized the “lump” as I had been calling it for months is actually a “tumor”. Lump sounds better haha). Smaller things means less surgery. 

She explained the lymph nodes. They could do a dissection, which is basically removing all or most of my lymph nodes in that area of the arm pit. You have several 10’s of lymph nodes in that area. By hoping to shrink things and using a dye, they may be able to find the cancerous sentinel node (the one that is actually transporting the cancer, there are 3 sentinel nodes I think?) and remove that one and a couple connecting to it instead of removing all or most of my lymph nodes. Any time you remove lymph nodes, you have to worry about Lymphedema (swelling in the limbs due to fluid blockage in the lymphatic system). A dissection puts me at high risk for it. By doing a sentinel node removal instead, we might prevent me from having Lymphedema (yes, please!). The biopsy done on my lymph node she says we don’t actually know which one it is because they’re close together. So she won’t be able to know till surgery. 

Funnily, after I spoke to her, I realized she never answered my “chemo” question. I wasn’t sure if that was because it’s not her realm of expertise or if she didn’t want to tell me I had to have chemo. Obviously no one wants know they have to have chemo. She did answer my radiation question and said that’ll be up to the radiation oncologist after surgery. 

She was nice, older, sounded German. I had a really embarrassing moment where I could NOT understand a question she asked me. I asked her to repeat herself 3 times. I felt so embarrassed! The masks didn’t help! She also told me my oncologist was basically “the” oncologist for SVMH. So that was nice to hear. She told me that this was her plan for me, but we would have to hear what Dr. Aziz (my oncologist said). She said, “he might disagree with me...Oncologists are...particular.” We all chuckled. 

Consult #2: Radiation Oncologist - Dr. Andrade

Young guy! I was kind of looking at him and thinking, “You’re at most 5 years older than me?” He was really nice, though. He asked me who I had spoken to and what treatment plan had been suggested and I told him. He also asked if anyone mentioned chemo and I told him that Dr. Guiroy had managed to not answer me, but I thought that was because that’s Dr. Aziz’s realm. He kind of did a thoughtful “yeah...” and then moved on. Once again, another doctor avoided the chemo mention as part of treatment! He did semi-mess up though as he was talking to me about treatment, he mentioned “chemo” as part of my treatment. At that point, I had done enough research on HER2+ treatment that I had very little hope that I was avoiding chemo so it didn’t really worry me. 

He explained that treatment beforehand for HER2+ has a high chance of causing the cancer to go away entirely. So there’s a chance I wouldn’t see him after surgery. I asked what the odds of that happening and he hem’d and ha’d and I asked “50/50?” And he agreed that 50/50 was good enough. So, that was nice to hear. 

He said for my type of cancer, he would recommend 25 rounds of radiation and, given my age (eye roll), an additional 5 for a total of 30. He said it’s 20 minutes each round, everyday of the week minus holidays and weekends. So, that is 6 straight weeks of radiation! We talked about potential issues. Immediate issues is the fatigue and the sensitive skin and peeling (it’s basically an extreme sunburn). He also said we have to worry about the heart receiving that much radiation. Of course, radiation also has a chance of causing others types of cancer (I knew that, but hearing it when you have cancer is a little like “what...?”). So there is a small possibility I may develop cancer from radiation later in life (he says it’s rare, but is a possibility). 

He also had received my genetic test so he was able to tell me I didn’t test for anything but the Variance of Unknown Significance (VUS) on the TP53. He said he had done some research and they find my type often in people of Asian descent, but they can’t determine, yet, if it’s an indicator of increase cancer risk or not. TP53 CAN be an indicator of increase cancer risk (all cancers), especially coupled with family history. TP53 is dominant so it can be genetically passed on to children. When parents or children are found to have the TP53, it’s often they find a history of cancer in the family. Scary. Some people with TP53 decide to not have biological children because of it (or do IVF to skip the gene). At any rate, they find TP53 often in children because children with rare cancers at young ages are a clear indicator of TP53. Where my TP53 marker is, there’s not enough known to make a determination. If my genetic’s lab ever finds out, I’ll get updated (benign or not). 

He was really nice and showed me my mammograms and MRI too. So that was cool to see and he explained it to me. The scientist in me found that fascinating. 

Consult #3: Oncologist - Dr. Aziz

Just like when the Doctor told me I had cancer, Dr. Aziz took a breath before telling me I was going to do chemo. I really would like to be the fly on a wall of a few patients who fall apart in anger or tears because do they expect me to have some “moment” because of my age? The fact I have cancer? I’m not sure. I mean, sure, being told you have cancer might cause a moment, but by the time you get to the part they tell you you’re doing chemo, I would think you’re set for chemo since cancer + chemo = common. Isn’t that what you normally hear when someone has cancer? They go through chemo? At any rate, I wasn’t surprised by the chemo.

He told me it’s 6 rounds of 4 drugs (2 chemo, 2 targeted therapy drugs for HER2+). It gets administered every 3 weeks. He did tell me, though, that there’s a clinical trial of less chemo that I could try (it’s once a week for 12 weeks). This national clinical trial was not being done at SVMH, but he could see if maybe Monterey had it, otherwise, he knew Stanford was doing it and he could get me in through there. He said if I went the clinical route and cancer was still found, they can hit me with more chemo after surgery if need be and radiation. If there’s no cancer left, then great. The real thing about the clinical vs traditional in terms of post-surgery is the extension of treatment if I don’t respond well to less chemo. 

How I see it? I can go traditional, get pumped up with all this chemo, and still come out the other side with cancer left and go through radiation (I could get more chemo too). I can go traditional, get pumped up with all this chemo, and come out with no cancer. Or...I can go clinical, get pumped up with less chemo, and still come out the other side with cancer left and go through more chemo after surgery (if need be) and radiation. I can go clinical, get pumped up with less chemo, and come out with no cancer AND HAVE LESS CHEMO. So, I don’t really see a downside on doing the clinical trial, except the travel. I do think I found the trial is being conducted at the Palo Alto Medical Foundation - Santa Cruz (Dominican Hospital) so hopefully that’s true! Be less of a drive for sure. I also feel some type of “obligation” as a person who is younger and a less complicated stage of cancer to try this clinical trial for the betterment of women after me. What if they do find that less chemo works as effective as the more chemo? Why wouldn’t I try to help women (and men) after me be subject to less chemo for similar results? Progress cancer treatments from the day of “throw everything at it to kill it” to something that’s more refined and just as effective. Or at least given women (and men) the option in having less chemo? In addition, it’s the same drugs. As Chris pointed out. It’s not new drugs or a new treatment plan that’s radically different. It’s the same drugs, same steps, it’s just one less chemo drug. So it’s not your typical “scary” clinical trial you often hear about. 

The doctor also explained this about the clinical vs traditional. He said SVMH asked to do the clinical trial, but was denied at this point. It’s in Phase 2 right now (that’s testing treatment, I think? Phase 1 I think is establishing protocols? Phase 3 is wide-range testing of treatment...?). 

He did tell me he is getting me scheduled for a CT, echocardiogram, and port-a-catheter insertion. I apparently also get a bone density test too. The CT is to make sure cancer hasn’t travelled anywhere else and to get a “baseline” (reality of my life...worrying about getting cancer somewhere else in the future). Echocardiogram is to make sure my heart is strong enough for chemo (that’s comforting to hear...). The port-a-catheter or “port” I had already decided on. I guess some places make it optional to patients, but SVMH basically doesn’t. It saves your veins in your arms from chemo. The port is inserted under the skin and goes directly into a main vein that goes to the heart. The port will be used to draw blood, chemo, etc. I’ll be getting poked a lot so it’ll help save scar tissue issues in the arms too. 

He lastly said that he’s going to give me a shot to put my ovaries “to sleep.” It’s basically a medically induced menopause. This will help them to not take in extra chemo if they’re not functioning like normal. Despite not wanting kids, because I’m young, he wants to leave my options open to me. Plus, given it’s chemo, I’d rather my body is subject to as little chemo as I can so I wasn’t against it ultimately. 

Consult #4: Chemo Teach with NP

Guess it’s not really a consult. It’s more what it’s named. It’s to tell me the process of chemo treatment and what to expect. This Chemo Teach was assuming I would do the traditional chemo at SVMH. Oncologist had told me he wanted me to do it just in case. We spoke for AN HOUR. My brain hurt so badly at the end! The plan was to have me start chemo on 3/31, but given it’s now 3/27 and I haven’t had any of my other appointments, it’s not going to happen by 3/31. I also want to do the clinical so I think that’ll change my timeline too. I’ve asked 3 people and all 3 of them say it’s insurance that’s taking so long. They have yet to approve anything. I guess I’ve moved on from the “optional” portion of my treatment (therefore they did it without prior insurance approval) to the “required” portion (my MRI was approved rather quickly, though? I even got a notice that was approved and doesn’t appear in my insurance claims). It can take anywhere from 5-10 days, but oftentimes a week. So, maybe early next week I’ll hear. 

She went over the process of chemo: 4 drugs (traditional) given by IV one after another over about an hour each. Before chemo is given, blood tests are completed to make sure my white blood cells count and other indicators are at an appropriate threshold to do chemo. So the first session will probably be 6 hours long because of all the tests and also they go slower in the beginning to make sure there’s no adverse effects. Time to stock up on books, movies, tv shows, notebooks, or whatever else to entertain myself for 4-5 hours. I do have an iPad and external battery is going to come in handy and my AirPods too. Snacks also...everyone says to bring snacks and a blanket. 

She went over side effects (nausea, constipation, diarrhea, etc), medications I’m to take and when, things to do at home given I’m not home alone, and all sorts of things. Chemo is CRAZY. When I’m being given chemo, I’ll also be given a steroid at the same time. I also get a steroid I have to take a few days after chemo. I also get an anti-nausea medication I need to take for a few days after chemo. I also got a lidocaine cream to put over my port site to help with pain (I’m thankful for that; I’ve heard other people find it super sensitive and have to ask their doctor for the cream so I’m glad mine gave it to me without asking). I also get a white blood cell growth enhancement thingy that auto-injects about 24-36 hours after chemo. It’s to help build my white blood count. She said bone pain is also common because the platelets in my bones are also being destroyed by the chemo. I can take over the counter meds for that. I’m thinking in my head “Am I going to have growing pain feelings at 35?” 

Hair loss will also happen. Oftentimes it happens right away with chemo, but will start to grow again shortly after chemo ends. Fatigue is normal too. She said to drink lots of water to flush the chemo out and to make sure my diet is good to help because my system will be messed up. She said to take it easy. 

I asked about the Covid vaccine and she said it’s pretty much too late for me to get it. It’s too close to chemo and we’re not sure how I’m going to react to chemo. She said if I’m doing well through chemo and they have a good grasp on how I do between treatments, maybe I can get it during treatment. Otherwise, everyone in my house getting it is a good step and we can hope that I still have antibodies leftover from Dec. 

One part that made me laugh is she told me to flush the toilet twice and close the lid after I pee for a few days after chemo. She said I’ll be peeing out chemo. She said it’s not a big deal (no one is going to have hair loss or start glowing), but to be on the safe side. It made me giggle thinking about the toilet glowing from the chemo I’m peeing out. 

That was pretty much the most of what we talked about. It was a lot of information. 

When I think about all my treatments and how long they last, if we go by the timeline I’ve been told now, it’s 18 weeks of (traditional) chemo/targeted therapy, I assume another 4 weeks before surgery, surgery, and then 6 weeks of radiation (I assume that starts 2 weeks after surgery? Complete guess). That’s 30 weeks of treatment. I’m looking at 7-8 months down the road I might be over the main part of this. Once those are all done, there are still follow-up tests and then starts the regular follow-ups. Talk about a long haul...

I know treatment alone can wear you down, but I think it’s now occurring to me the length of treatment is the real strength killer. So many women I’ve heard who stumble because of how long you continually go through this. I know my support system is good and I think I’m strong enough, but I also have to be realistic that I am going to have down days and those are okay and I will need to pick myself up again. I am trying to take this daily, though. I’m trying to not look too far in the future. I’m trying to not think about the side effects people have spoken about or to think about them. I may have an easy, breezy time of this and the time might fly. Or, it might be brutal and the only way to get through it is day-by-day anyway. Here’s hoping for more good than bad days.