Cancer 101: Listen to Your Body

a cautionary tale

Dear Friends,

Today I’m writing something a little different. This is the story of my cancer diagnosis with lobular breast cancer, and it might be important information for someone. I’ll return to more reflective writing next time.

Someone told me recently that the story of my breast cancer diagnosis had helped them to make some important decisions about their health. One in 8 women will get breast cancer in her lifetime (7 in 8 won’t and I hope you and your loved ones are in that lucky 7!) Some genetic mutations such as BRCA1 and BRCA2, or CHEK2 increase a person’s risk for breast and other cancers. As with any cancer, the earlier it is detected, the better for outcomes. In case it’s helpful to someone else, I’ll tell you my story and a bit of what I’ve learned along the way.

First, a disclaimer: every person’s experience of breast cancer is different.

If you don’t have time or interest to read through this, here are the Cliff Notes:

• Don’t dismiss your intuition if you feel that something is wrong in your body.

• You may have to push your medical providers to take you seriously.

• If you are anemic, insist that your medical team figure out why.

• If you have rapid, unexplained weight loss, go to the doctor and insist that they run tests.

• (These last two are especially important for menopausal women.)

• There is more than one kind of breast cancer, and the signs can differ.

In hindsight, I recognize that I was not feeling well during most of the pandemic.  I would describe it as malaise, but who didn’t have some malaise during the pandemic?  I chalked it up to the times and didn’t give it much thought. By 2021, I was having assorted and more frequent aches and pains, but I attributed them to “popping a rib out” or pulling a muscle and figured I was just out of shape and aging. As the summer of 2021 wore on, I tired more and more easily, and when we went on a modest hike in September, I really struggled and had to stop frequently to catch my breath. Again, I focused on how out of shape I must be. I had also started to have stomach issues. Too much volume of food or liquid in my stomach was painful and I would have to pause for an hour or two to let it pass. It felt as if food and liquid would back up in my system, and then slowly gurgle through.

Let me say here that I am not one to rush to the doctor with every symptom. I have been blessed with mostly good health and tend to wait to go to the doctor until I really think I need to.

I finally saw my primary care doctor in October 2021 and had a panel of blood tests which showed that I was anemic. This seemed to explain why I was so tired, but they did not reveal why I was anemic. All of the typical, simple explanations (such as low iron) were not true for me.  The doctor was inclined to a wait and see approach but agreed to refer me to hematology. When I saw the hematologist in December 2021 and was weighed, I realized that I had lost about 25 pounds in a few months without trying. I mentioned this to him, but he did not seem concerned. I told him about my fatigue which was increasing. I had started to break up tasks, such as cooking, into small intervals because I could not stand for a long time. He was kind, but he did not investigate any further to understand why I was anemic. He just told me to come back in 3 months.

I have since learned that no menopausal woman should be anemic or should have rapid unexplained weight loss.  Both of these symptoms are huge red flags that should be thoroughly investigated by your doctor.

In November 2021, I had a routine mammogram which detected no abnormality. This is not uncommon with my type of cancer, lobular breast cancer. I’ll explain more later.

In November 2021, I also pushed for a referral to gastroenterology from my primary care doctor because I thought perhaps a gastric bleed would explain both my anemia and my stomach symptoms. She reluctantly agreed but told me that they might not be willing to see me.  They did call and schedule an endoscopy for early February 2022.

I continued getting more and more fatigued, to the point that I had to take a break to sit down between showering and drying myself off, because I didn’t have the energy to do both in succession. I continued to lose weight so that by March 2022, I had lost a total of 50 pounds. I had new pain in my hip that made walking difficult.  In hindsight, I could have called my primary care doctor and pushed again for faster treatment.  But she had been unconcerned, the hematologist was unconcerned, I was exhausted, and I did not have any confidence that they would treat me with any urgency.

I had had a long and positive relationship with my Primary Care doctor.  She was kind, but not my advocate in this situation. She did not look at my symptoms with either urgency or curiosity. I knew something was wrong with me. But I gave up pushing because it was hard, and it felt futile.

You are the only person who lives in your body, and you know best whether something is wrong. If you believe something is not right in your body, insist that your doctor take you seriously. If you don’t have the energy to do this, allow your loved one to do it for you.

I had my endoscopy in February 2022. At the time, the gastroenterologist suggested that my symptoms might be a result of taking too much ibuprofen and that they were likely my fault. The endoscopy did not find any gastric bleed. But they took routine biopsies of my stomach lining.

I got a call at 9:30 pm on a Sunday night from the gastroenterologist – never a good sign. He told me that they had found breast cancer cells in my stomach lining.

This began a flurry of testing for the next 3 weeks which revealed that I have invasive lobular breast cancer that has metastasized throughout my bones, and into my stomach lining. This is a Stage 4 diagnosis and is considered incurable. Treatment options are geared toward giving me as much good time as possible, and I am grateful that at this time, they are working.

There are multiple types of breast cancer. The most common type is ductal breast cancer (about 70-80% of all breast cancers). The second most common type is lobular breast cancer (about 10-15% of all breast cancers).

Unlike ductal cancer which tends to grow in lumps, lobular cancer tends to grow in strands, like a spider web. This makes it much easier for it to hide and makes it very difficult to detect. This is why my mammogram in November 2021 was “clean,” in spite of the fact that I already had advanced cancer, including growths in one breast. In fact, the cancer in my breast was also hard to detect with an MRI, and was best seen with an ultrasound.

One last thing. I have recently discovered that I have a CHEK2 genetic mutation that increases my risk for breast and other cancers. Originally the thought that my cancer might have a genetic component was downplayed because I do not have a lot of female relatives with a history of breast cancer. My wise daughter pointed out that this could be because I don’t have a lot of female relatives. Again, don’t let statistical arguments dissuade you if you know in your gut that something is wrong.

I hope this story is never relevant for you, and that if it is, the cancer is detected early. But if you’re like me and you have a Stage 4 diagnosis, I assure you, there is still living to do.

Thanks for being here. Please share this with anyone who might find it useful.

Lots of love,

Maija

Song of the Week: a little antidote to all of the above, Beautiful Life by The Collection and as they say, “Oh, give me all you can of this beautiful life.”