My Cancer Scare Story Continued

I have lived with small lymphocytic lymphoma for 13 years. Periodically, when I have had yearly mammograms, suspicious areas of concern were found, typically, requiring a biopsy. Thankfully they all have proven to be related to my lymphoma.

Recently, I wrote a blog about once again experiencing the doctor giving me bad news. A solid mass was found in my left breast requiring a follow-up ultrasound. The anxiety began. After the ultrasound, the doctor came to talk to me.

“We know you have lymphoma and you have had this issue before, however, this time it does not present like a typical lymphoma lesion. It should be biopsied.”

That is where I left off on my last blog and ended it with… to be continued.

At my next oncology visit, I discussed this with my doctor. I told him my concern was that this showed up on my PET scan in August. I started Calquence (acalabrutinib) in September. I asked, “If it was a mass from lymphoma, why wouldn’t the Calquence take care of it?” He wondered the same and told me I definitely need the biopsy to check it out.

After the biopsy, I was told I would receive the results in three to five business days. So, the waiting began. Five business days came and went. I called, of course, and was told the results were not in yet. After seven business days, I called again and was simply told more stains were required. It will be another week.

First, I thought this must be good news. If it was breast cancer, they wouldn’t need more stains. It either was or it wasn’t. I thought they must need more stains to figure out definitively what it was. This was still worrisome because if it was my lymphoma, then why didn’t the oral chemo take care of it? That can’t be a good sign. My mind dove down the hole of the unknown and decided it must be a new rare form of cancer that they are looking for.

I waited. The anxiety became crippling. I couldn’t make any life plans. I wouldn’t even get my hair cut! Why would I spend money on a haircut if I’m going to need chemo? This is where my head was at. With each added day, I was spiraling down a deep hole. I was paralyzed because I couldn’t see past hearing a definitive diagnosis. One of my fellow bloggers accurately called her waiting for scan results, “scanxiety.” That hit home for me. I was still waiting for my results when I read that.

I couldn’t focus on reading, but I did enter a writing contest, had family dinners once a week and worked on a presentation to educate students at a museum. I am determined not to waste time, waste “life,” each time I have to go through this! Volunteering to help others distracts me. It’s a win/win.

Finally, just over two weeks after the biopsy, I got a report in my chart.

“In summary, the above findings are consistent with small lymphocytic lymphoma (CLL/SLL).”

I was overjoyed. At least I didn’t have to deal with something new, and I was thrilled not to add breast cancer to my list.

I learned that the doctor who did the biopsy found out on the fifth day after the biopsy that it was not breast cancer. I felt the doctor showed no empathy for me, the patient waiting on pins and needles. As cancer patients, we need to be our own advocates. I called and told the nurse how I felt about it as nicely as I could. I asked her to let the doctor know, hoping next time she might think twice about it and handle it differently. The least the doctor could have done was have the nurse call and tell me they knew after five days that it wasn’t breast cancer but they wanted to further study the slides. That would have been so helpful.

It has now been three weeks and I still haven’t heard from any doctor, but I did receive an addendum to the results I received.

“IMPRESSION: Surgical consultation is recommended for further management.” I feel sure and I’m hoping that my oncologist will tell me not to have the mass removed because I have dealt with this before.

Although the drama continues, I feel so much better. I feel better that I didn’t waste more precious time in my life and I feel better that I can say this has a good ending, even if I may still have to have the mass surgically removed. These are tough times to go through, but I am just glad that my lymphoma was the cause and the bad news I began to expect didn’t come to fruition.

Maybe the power of, “Think good and it will be good,” really has some validity!

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