First, an apology for the multiple months of silence on here. Turns out that finding the time for blog writing is a lot harder when you’re working full time AND continuing cancer treatment. Duh. So, I’m going to do my best to catch up on what’s gone on in my life cancer-wise since May.
The choice to do radiation originally seemed like a no-brainer, but turns out not all cancer treatment decisions are clear cut. The last time I talked about Radiation on here was back in December 2018 (which seems like it was AGES ago at this point). In December I first met with Dr Willson, my radiation oncologist. When we met, Dr. Willson said that given the stage of my cancer (IIIB) there was no doubt in her mind that I should do radiation following surgeries. Basically, if the original tumor size is over 5cm the current guidance is to do radiation regardless of how well chemo and surgery go. The MRI I had done in August measured the tumor at 6.2cm in length – so doing radiation in the spring was now the plan.
And then in February I did my double mastectomy where the surgeon determined that I had a complete response to chemo (yay!). Additionally, when they removed the tissue from my right breast they were able to remove and measure the “tumor bed” – this is the set of cells that show where the tumor WAS. And when they measured the tumor bed it came in at 4.2cm – not 6.2cm. So now there was debate over how big my tumor was originally. Triple negative breast cancer comes with a whole host of challenges – one of which is doing chemo neo-adjuvantly (before surgery). While doing chemo first improves long term prognosis (and prevents further spread of the disease) it means you never know the EXACT size of the cancer tumors because they’ve presumedly shrunk (or in my case disappeared completely) by the time surgery removes them. But the guidance on further treatment is based on the ORIGINAL size of the tumor.
So, suddenly the choice to do radiation was not so clear cut. At the hospital where I’m being treated they hold a weekly Breast Cancer “tumor board” where they review the prior week’s breast cancer surgery results and align on the next steps for treatment. The full medical team shows up (general surgeon, plastic surgeon, medical oncologist, radiation oncologist, etc. etc.), they review the surgery results including pathology and then discuss the right next treatment steps (could be more surgery, more chemo, radiation, or a combo). When my case went up for review there were a lot of fist pumps and back slaps (so I hear, patients aren’t allowed to attend) because of the complete response I had to chemo and the fact that my lymph nodes were clean (meaning the cancer hadn’t spread). And then they got into a debate about the actual size of the tumor because that was the deciding factor in recommending radiation. They looked at the MRI and also the ultrasound (which measured the tumor smaller than the MRI) And the board decided that I didn’t need radiation after all.
This maybe should have been a relief to hear – but it made me suspicious. How could I have gone from 100% needing radiation to 100% not needing radiation? Especially when what they removed wasn’t the tumor, but just the tumor bed – they didn’t re-stage my cancer based on the tumor bed size (I was still stage IIIB) so how come the treatment recommendations pretended that I was actually stage II? I was CONFUSED. So I met with Dr Willson again. So I could hear her opinion directly – after all, she’s the expert. Turns out Dr Willson still felt like I should do radiation – she just got “overruled” at tumor board (I guess politics exist in medicine and not just Corporate America). Dr Willson walked me through her rationale – the MRI is still the most accurate measure of the tumor size, and I had two significant additional risk factors – my young age and triple negative status. She said the choice was truly mine – no one on my medical team would think poorly of me if I chose not to do radiation, but that current medical research guidance indicated that I should do radiation. I left our conversation still confused on what the right thing to do was. And I had a fair amount of time to make a decision as the earliest they would start radiation was 8 weeks after my mastectomy.
Without radiation, based on my surgery pathology, my risk of 5-year recurrence was about 5%. With radiation, that number drops to about 3.5%. Radiation comes with short term risks including skin burning and fatigue, and some longer-term risks including additional cancer risks for the areas that get radiated like your skin and lungs (but the risks are LOW like 0.2% low), the potential for asymmetry between the two breasts (radiation causes the skin and muscles to tighten, meaning the radiated side tends to shrink a bit and rise up a bit in the year or so following treatment) and the biggest potential risk : an infection that would cause my body to reject the implant, require immediate surgery to remove it, and limit my future reconstruction options (once your body rejects an implant you can’t get another one). I had a long list of pros and cons for doing radiation and I still felt unclear on what to do.
So, I decided to get another opinion. I called the University of Minnesota radiation oncology department and got an appointment with their Breast Cancer specialist, Dr Jianling Yuan. Dr Yuan was VERY helpful. She came prepared with medical studies, and other opinions from experts in the field and even walked me through my MRI and Ultrasound images to show me how they were measuring the tumor and also where my lymph nodes showed some “suspicious” activity before chemo. All in, she agreed with Dr Willson’s opinion. It was my choice, but she recommended that I do radiation.
I started to feel better about doing radiation – I talked to some doctor friends and also discussed it at support group where I got maybe the best advice of all – starting radiation didn’t mean I had to finish radiation – if it got awful and I decided it wasn’t worth it, I could always stop and not do the full course of radiation. Knowing that deciding to do radiation wasn’t this ginormous commitment made it feel a little easier to choose to do it – plus I figured that if I ever had a recurrence (fingers crossed, never-ever, please please please no recurrences) having done radiation would mean I did everything medically possible to prevent recurrence – and would hopefully mean I wouldn’t regret the choice after it was too late. So that was that – I was decided – I was going to do radiation.
Unfortunately there was a slew of mental gymnastics involved in deciding to do radiation
Fortunately I landed in a spot where I felt like I made the right, no-regrets choice.
Fortunately Unfortunately 