New Oncologist = New Treatment Plan

In the July Update, I mentioned my lymph nodes had been feeling swollen. My regular oncologist didn’t think it was worth exploring even after bring it up at 3 different appointments. It doesn’t sit right when your doctor isn’t taking your concerns seriously, so I set up an appointment with a woman oncologist but the appointment wasn’t for another month and a half (yeah, that’s fun).

I got concerned enough I messaged my general practitioner, who initially referred me for testing after I found a lump in my breast. She ordered an ultrasound and a CT scan because of how my breast cancer showed up (or didn’t, as the case may be).

SCANS WERE CLEAR! Fantastic fucking news.

Was my original oncologist right? Yes. Would I “cry wolf” again? Also yes. Something feels different in my armpit, I needed to be sure it wasn’t what it felt like. And it’s important to me to have a doctor who is hearing what I’m saying.

So, what is it? Still not sure. I could distinctly feel the lymph node during the ultrasound – that was strange. It’s possible I’m gaining more nerve feeling back in that area, and that’s just how it feels now.

While my oncologist was right, there was nothing to explore, I wanted a new one because I need my doctor who can listen to all my concerns and help me make the best decisions.

And oh, am I glad. She is fantastic. She took the time to read through two years worth of medical notes. I actually learned quite a bit about my diagnosis and treatment through her explanations.

HER2 and ER/PR

When you’re first diagnosed with cancer, you get tested for all the hormones that could be fueling your cancer. I’m mostly HER2+, but ER – or estrogen – showed up as a “weak positive” at 18%.

The main part of my treatment – chemo, surgery, and radiation – was aimed at the HER2+ cells rather than ER. The monthly stomach implants (Goserilin or Zolodex) and aromatase inhibitors (or AIs) are treatment options for ER+/PR+ (PR being progesterone) breast cancer. Notice I didn’t include PR+ in my diagnosis – I’m not. However, the treatment I’m on is for that diagnosis.

“Overtreatment”

The oncologist – let’s call her Dr. S – gave me a little history of cancer treatment in order to explain that a lot of doctors just prescribe the maximum treatment because that’s what they did. You threw everything at it to cure and prevent it from recurring.

In my case, HER2 made up the majority of cancer cells, and I had a complete pathological response to the chemo that targets HER2. Statistically, there’s a high likelihood I’m “cured” of the cancer I had, so the treatment has done its job. Pursuing the ER+/PR+ treatment sees overkill in light that (1) I’m only ER+ and (2) it’s highly unlikely this cancer would come back as anything other than HER2+.

Bone Impact

Besides AIs being terrible for my mental health, the ovary drug Zolodex is bad for bones. The bone density scan I had earlier in the year already showed the damage done: osteopenia. Once bone health is gone, it’s gone. You don’t get it back. But you can keep it at bay.

Taking calcium supplements plus vitamin D is the best way, plus getting 2 more servings of calcium a day. We discussed Zomeda, an infusion recommended for those struggling with calcium intake. My former oncologist was happy to prescribe this to me, but I had read that it can really impact your oral health.

I already have TMJ, my entire mouth is filled with fillings…so I was already apprehensive. Dr S. explained it doesn’t do anything extra other than shutting down a gland function (she explained the science behind how this glad shuts off another organ from stopping calcium production…I think! I am not as sure about the science behind it all), so it’s probably not a great option for me. Plus, if I take vitamins and make sure to eat or drink 2 additional servings, I should be good.

She also suggested weight-bearing exercise!

Altered Body

During our discussion of hormone treatment, she asked me if my period cycle had restarted since I’m out of the Zolodex window (it’s been more than a month since I’ve gotten it). I haven’t. She said it’s likely treatment has permanently altered my cycle and even my metabolism. I am the lucky recipient of 30 extra pounds (a sign that my body is done with chemo), which makes sense now.

Remember me saying chemo was like pregnancy? Well, this is, too. Coping with a new body. Ugh.

The Treatment Plan

It was an easy decision to finally say FUCK no to AIs. Not necessary or worth the damage.

We discussed Zolodex (ovary function). Here’s the thing: I’m tolerating it well with few side effects. Studies show (her info, not mine) that these treatments do most of the work in the first two years, so she recommended doing monthly Zolodex until May 2024. That I can fucking do.

She noted the recent uterine ultrasound for the cysts. Apparently, I was supposed to follow up with another one after 2 months, so she’s scheduling another one. It should show if there are any changes. It’s generally considered unrelated to cancer, but one can fuel the other.

After that, it’ll just be bi-yearly chest exams. Dr. S. explained that she actually does something a lot of oncologists don’t: order regular blood tests! They can show markers for cancer. I love it – a proactive doctor!

Why doesn’t insurance want to cover this kind of preventive, early detection??? Imagine what a difference that would make.

Smooth Sailing Ahead

^I’m manifesting.

Honestly, it was a huge fucking relief to hear I don’t have to take AIs. Motherfucking massive.

Dr. S. is definitely my new oncologist! She reminded me of the doctors at Mayo – how invested she is in her patient. She gave me the pros and cons, quoted studies and statistics, and gave me her opinion when I asked for it. She was very present and engaged, extremely empathetic. I know I’m good hands with her guidance.

And just 8 more months of stomach implants is all that’s left!

This is the end I’ve been waiting for. Facing 5 years of those damn pills felt more insurmountable than what has already happened.

Hormones are no joke.

The prospect of being cured feels slightly too tenuous to celebrate yet…but it somehow feels more real. Obviously, you never really know, but having studies and statistics makes it a little more secure.