Julie can't eat cheese

I finally met my surgeon on 10/19. I’d been reading through all the documents my nurse case manager sent, I had a note book and was ready with questions! I was in the appointment for about an hour. We talked about a few scenarios as I was still waiting on the genetic testing results. He said with breast cancer there is a lot of testing and waiting.

Potential scenarios: if my genetic testing came back positive – it would be double mastectomy. If it was negative, I needed the MRI guided biopsy on the second spot they found. If that spot was positive, it meant the cancer had spread and it would be mastectomy. If it was negative, I could do lumpectomy with radiation.

My surgeon didn’t think I would have a BRCA gene as I have no family history of breast cancer. I asked if I should get my COVID booster and he said casually, Oh yea, once you have chemo you’ll have no immune system so get it before surgery. Ummm, what? Chemo? Thanks for dropping that bomb. He said they look at the genetics of the cancer (onco-type testing) after surgery to determine if chemo is needed and he suspects due to my age (again, young for cancer), I will need it.

I then asked about what I should be doing to stay healthy and this was the anticancer lifestyle portion of our chat referenced in my first post when I got the WORST.NEWS.EVER. I could no longer get Costco pizza on the regular. I blacked out at some point and came to and he was talking about documentaries to check out, foods I should be eating (plant based/whole foods/vegan), vitamins to be taking, exercise (5 days a week, min 30 min heart rate over 130), and meditation (daily). My surgeon is actually really amazing, I know I am in good hands. But I am really sad about the cheese.

I scheduled my next MRI and biopsy for the week after, hoping I would have the genetic testing back in time and could either cancel or go forward.

I had a Zoom post surgery PT appointment on 10/20. This reviewed activity guidelines after surgery and exercises to be doing. I cannot return to normal activities until 8 weeks after surgery! Just walking and stretching. They also reviewed lymphedema, as this is a risk factor when having lymph nodes removed. I will have to have blood draws and blood pressure on the opposite side of surgery for the rest of my life. And lots of hydrating when traveling. I think I was also the youngest in the Zoom room. Lots of lovely older women… not knowing how to use Zoom…

On 10/21, my genetic counselor called and 9 of my genetic tests were in – I was negative for all the hereditary breast cancers! Finally, it felt like some good news! She said we were waiting on the remaining tests, which would be another week or so. The results for genetic testing are positive (you have a mutation), negative (you don’t) or uncertain variant (which means there isn’t enough research, but they treat as negative until more is known).

And on 10/26 the genetic counselor called back again with the remaining results: no mutations found on any genes. There was 1 uncertain finding – on the Rad50 gene, but mutations typically show up as an autosomal condition. I registered for updates with the genetics lab and will get updates as more research comes out on this gene. This is great news for P though – she will not have to get tested when she turns 18 and the recommendation for her now is to start mammograms 10 years before I was diagnosed (in her early 30s).

I also had my 2nd MRI/MRI guided biopsy on 10/26. They were looking at a second spot that was seen on the first MRI. This was different than my first biopsy – which was done with ultrasound. It was the same radiologist I had at my first mammogram/ultrasound, who had no poker face. There was a lot of in and out of the machine in order to line up the imaging and then do the biopsy. I think they also took images with and without contrast. I pictured myself on a beach again and I think I snoozed (must’ve been the mental toll). The radiologist said that was a first. I had to go up for a mammogram after so they could note where the markers were placed. This biopsy hurt less in the moment, but felt like it took longer to heal.

I got a text on 10/28 that I had new lab results. My 2nd biopsy was back – benign breast tissue, no evidence of carcinoma. *More good news – huge sigh of relief!*

On 10/31, I had a phone call with my surgeon to discuss surgery now that I had all my testing back. I had a lot of questions still and had been expecting the worst (in terms of the 2nd site and a genetic mutation). I didn’t think I would have surgery options and believed I would need a mastectomy. But my surgeon called and first thing he said was, “Great news with the testing. You’re a candidate for breast conservation, so lumpectomy?” I think I said “uuuhhhhhhh” for a full minute. I didn’t know what I wanted to do – I had expected and talked myself into a mastectomy. But did I want 2 additional surgeries after mastectomy (expanders, then implant exchange)? Uh, no. But I also didn’t want to have to do this again and thought mastectomy meant no recurrence. [It doesn’t. Breast cancer can recur in other places in the body or the bones/chest wall.] There are actually equal cure rates (5 years out) between full mastectomy and lumpectomy/radiation. But you have to have radiation with lumpectomy – which also scared me… My cancer is on the left side and there could be damage to my heart. I still don’t know if I will need chemo… I was spiraling. My doctor said this can’t be just a head decision – it has to be a heart one too. He said to think 5 years out, when I look back, what will I be happiest with? What is the best decision? He said he’s a fan of “big vistas” – go somewhere with a big view (mountains, oceans) and meditate, think about things before deciding. He also agreed to do referrals to both radiology and plastic surgery so I could ask questions to help in my decision making.

I got the radiology referral the next day. I made an appointment for the following week. I finally joined some Facebook groups and did searches for lumpectomy vs mastectomy. I read articles online. I started leaning towards lumpectomy/radiation. A few days later I got the referral for plastic surgery – I tried calling and their office was closed. It felt like a sign. I called to schedule my surgery: lumpectomy with sentinel node biopsy.

I scheduled on 11/4 for 12/15. My surgeon had shared it would be about a month after I decided due to Covid back ups in the OR (still). And I wanted it mid-December to get work things in order.

I had my radiology consult on 11/9. My surgeon had called the radiologist a rock star in breast cancer treatment and she was pretty amazing. She did a thorough review of everything to date (all my testing, results, etc.). We then talked at length about radiation – they do a breathe in/hold technique, which pushes the heart to the side. And hopefully I can be on my stomach, which further reduces radiation spread to the heart. Radiation will decrease local recurrence by 50%. If I don’t need chemo, I will start radiation 4-6 weeks after surgery and will have between 20-33 treatments (more if lymph nodes have cancer). The radiologist also encourages a plant based diet.

I finally remembered to ask WHY. NO. CHEESE?! The cancer I have is hormone positive (I will have to be on hormone blockers for 5-10 years). Animal products (especially dairy and chicken) are high in Insulin Growth Factor 1, which feeds the breast cancer and encourages growth. [I *think* she called it animal estrogen, but don’t quote me – it was a lot of information.] She also said soy is fine and breast cancer patients are encouraged to eat it, as it actually acts as an estrogen blocker. We then talked about how to protect my skin from the radiation, she gave me a lot of resources, and I scheduled a follow up appt with her after surgery.

The surgeon’s office called me to schedule a phone appt and I was able to talk with him again on 11/14. I was worried something was wrong but he just wanted to check in, as I had scheduled my surgery, to make sure I didn’t have any additional questions. We reviewed the surgery and he talked more about the sentinel node biopsy. They will biopsy the lymph nodes closest to the cancer. If any of those are positive, I may need a second surgery to remove more. But the hope is they get clear margins around the cancer the first time.

I read somewhere early on that surgery is only a small part of the treatment plan. And while it felt like a huge/enormous/monumental decision that took awhile to get to – there will be more to do.