Interminable waiting for next steps

You would think that once you’re diagnosed with cancer they do something right away. I mean you’re walking around with something deadly inside of you. Terrified it’s going to grow, that it’s going to spread. Every second you’re afraid that you’re that much closer to death. But it takes a very long time for the next steps.

At the time I got the results from my biopsy it had been just over a week since I had found the lump. I wanted something to be done immediately. When I got back from North Carolina, I hadn’t heard anything from the doctor’s office. I thought they would want to see me right away but nothing. Maybe they’d forgotten about it? Maybe I was supposed to call them first? As I mentioned before, I worry a lot, so I ended up calling them Tuesday morning. They said they were just about to call me to make my appointment. The earliest they had was for Thursday – two weeks and a day since I’d found the lump.  I was going to meet with the Director of the MSU Breast Clinic -the same surgical oncologist I’d met with the first time.

As I waited anxiously for the appointment, I tried to live my life normally. I mean, I still had to work. I still had to be someone’s wife and mom to 5.

When my appointment finally came, I expected to hear that we’re going to do surgery tomorrow, we’re going to start some treatment right away, but what I heard was just confirmation that I had cancer. He told me specifically it was invasive lobular carcinoma, and re-iterated that my lymph node biopsy was negative. I knew already that meant Stage 2. That was good. Not as good as Stage 1, but still very curable. He also confirmed that my cancer was estrogen receptor positive (ER+) and mildly progesterone receptor positive (PR+). This means that the cancer cells contain receptors for these hormones and a more rapid growth is spurred in the presence of these hormones. This partly explains how my cancer grew so quickly – I had been taking hormone pills.

By this point, I already knew a lot about my cancer. I mean, I have a Ph.D., I’d spent hours already reading every medical website, every research journal article I could find on breast cancer, prognosis, treatments, everything. I knew from the National Cancer Institute’s SEER database that Stage 2 meant I had a 93% 5-year survival rate (remember that all statistics are simply measures at a point in time, and there are always outliers). I knew that depending on the size of the lump, either a lumpectomy (surgical removal of the lump) or mastectomy (full breast removal) was recommended. The best survival rates (and lowest recurrence rates) were attained by following surgery up with radiation therapy. Then, because my cancer was ER+, I’d get some hormone therapy for at least 5 years after that, probably in the form of Tamoxifen, which blocks the estrogen receptors on the cancer cells.

I knew all these things already. What I really wanted to know was – when would we begin these treatments on me? But the doctor explained that first I would be taking a class on breast cancer, to explain things. Then I would meet with each member of the cancer team – him as the surgical oncologist, a medical oncologist (chemo doctor), and a radiation oncologist – they would look at my test results and examine me. Then they would meet with each other and go over all my tests together to determine the best course of action.

The class and meetings took place the next morning – 2 weeks and 2 days after I’d first discovered the lump. For the last part of the appointment, the medical oncologist came to speak to me to explain the proposed treatment plan. But before we finalized the treatment plan, they wanted me to do two more tests. All I could think was – how much longer is this going to take before I can begin some sort of treatment?

First, they suggested a genetics test for mutations in the BRCA1 and BRCA2 genes. These genes are responsible for creating proteins that are tumor suppressors. All cancer starts as a damaged cell. Normally your body can easily repair the cell, and no harm done. But when you have one of these mutations, your body cannot as easily repair damaged cells. These damaged cells can then proliferate rapidly and in an uncontrolled way, i.e. cancer. If I had a mutation in either of these genes, I had a greater chance of recurrence and a 50% chance of passing it to my children. A double mastectomy would be the likely suggested treatment as a preventative measure.

Second, they wanted me to have an MRI. It would examine my entire chest area – both breasts, armpits and as deep as my chest wall. They wanted to make certain they didn’t find any other suspicious areas, and to more clearly determine the size and shape of the cancer. When they had first examined me, the ultrasound showed two lumps, each less than 2 cm in size. But they could not tell for sure if there was a connection between them, i.e. one large irregularly shaped lump, or if they truly were two separate lumps. The difference doesn’t seem significant, but I’d read enough to know that a larger size at diagnosis meant a higher risk of recurrence, and a lower rate of long-term survival. Again, I felt a pit in my stomach as I thought about what that could mean for me. And for my family.

For now, the proposed plan was: Once they received the results of the MRI, they expected to do neoadjuvant chemotherapy (chemo prior to surgery to try to shrink the lump as much as possible). After that, the actual surgery (finally), radiation, and  then hormone therapy. Pretty much what I’d expected from my research into it. What I hadn’t expected was how long it would take to get started.  They immediately scheduled my genetics test and MRI. Those would be the following Tuesday and Wednesday. Then it would be a full week before I could get in to see the medical oncologist to go over the results and finalize the treatment plan.

Four weeks exactly since I’d first found the lump. A very long four weeks.

5 thoughts on “Interminable waiting for next steps

  1. Gina, could the cancer have been caused by the hormones you were taking? When Gary and I were going through IVF, it was explained to us that my risk for cancer would/could dramatically increase due to the hormones consumption. I saw your entry about the cancer having been ER+ and PR+, so does that mean the hormone therapy just aided in the growth of the tumor, or could it have been the cause?

    Liked by 1 person

  2. Pam, I’m not sure on that. Possibly both? Hormones in the form of birth control is usually said to lower the risk for ovarian and breast cancer, but long term use of it starts to cause an increase in risk of breast cancer. So, I think that I had a greater chance of getting it from the hormones and then the cancer grew very quickly because of the estrogen receptors on it.
    I also know that the risk of breast cancer also increases with age and with hormone use after menopause (I’m not there yet, was in perimenopause, but will probably end up in menopause due to the chemo.)


  3. As I read this first paragraph, I relived my discovery of my lump. I am thankful I was here in AZ when I found it. The doctors jumped on it immediately, and I didn’t have any time to actually “think” about my breast cancer. The steps leading to my surgery were so quick, I actually didn’t stop and truly grasp it until I was done with radiation. Then it hit me. I was in go mode for my daughters and grandkids and for ME until it was over. Then I cried…… I’m still not sure if they were tears of relief or from being diagnosed.

    Liked by 1 person

  4. Thanks for sharing Marti. The less time to worry is better for me- I am a worrier by nature! I was told that my succession of appointments and treatments went faster than other people, so I was grateful for that.


  5. Pingback: … ended up pretty darn well | Gina Karasek

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