Incidental Lymphoma Finding After Hysterectomy

When I got there, the doctor came in and said, “Good news. The hysterectomy went well, but I found these two little things.” He described them looking like gumdrops. They were very smooth, round on the top, and flat on the bottom. They were about 1 to 1.5 centimeters. He wasn’t sure what they were, but his exact words were, “I didn’t think they looked insidious.” But to be thorough, he sent everything off for a biopsy. When the pathology came back, it was grade 1 to 2 follicular lymphoma.

He said, “I don’t know anything about this. No one in my practice has ever diagnosed something like this. We need to get you in to see another doctor.” I felt like I ruined his day because he felt so awful not knowing. If this was within his realm, like ovarian cancer, he could have at least told me something, but I could see it on his face. I felt bad for him having to tell me this. He said, “Don’t go online. Wait until you see someone. But this is where you’re at.” Then he sent me out the door.

When I say it was an incidental finding, we had no idea. It did not show up in my blood work, any ultrasounds, or any other tests we had done up to that point. We had absolutely no idea.

I don’t think I panicked until I got to the car and had to call my husband to tell him it was cancer. I think I just blurted it out. He thought I was coming home. We both had the day off, so we were going to hang out because it was our anniversary. What a great anniversary gift.

I didn’t know the difference between non-Hodgkin’s and Hodgkin’s. The one thing I knew was that a friend we knew had cancer and it was everywhere. I very quickly shared with a very close group of girlfriends who I had and said, “I don’t even know what this means, but can you please lift this up in prayer as we figure this out?”

I knew that I didn’t have the bandwidth to do this by myself. That’s not who I am. I needed some people. I called my husband. We talked the whole way home. I said, “He’s referring me to someone. I don’t want to wait for the referral. Let’s get on our insurance and find out who I can see. We need to get going quickly.” By that point, I was pretty hysterical. It’s blood cancer. It can’t be good. My mind was spinning.

First Cancer Center Visit and Initial Prognosis

When we walked into the cancer center, there were so many people there, more than I thought would be. Around 40 or 50 people were waiting to see a doctor. I know it’s a cancer center, so there are different specialties, and there was an infusion center, so there were so many people. I was the youngest one by a solid 20 years, which freaked me out. I looked at my husband and said, “I’m going to need a minute.”

I knew we had to see someone, but that was a tough moment for me. I stepped out, got myself together, and came back in to meet with the doctor. He wanted some tests done because all we knew at that point was that it was grade 1 to 2 follicular lymphoma. The very first thing he said was, “The good news is you’re going to live with this. You are likely going to die from something else. You have grandkids, graduations, and weddings to attend.”

I remember having this huge weight lifted off my shoulders, and that we could do this and it would be okay. Then he gave us some information to go over and sent us off to another area in the cancer center to do blood work and imaging. After, we came back and met with him after taking in that initial meeting.

Ironically, someone I knew also knew someone with follicular lymphoma. It’s not the most common cancer, but this woman reached out and said, “Do you know there’s an MD Anderson office in Colorado? I didn’t choose to do treatment there, but I went and talked to one of their specialists, and I learned a lot about my disease. You should at least go and meet with them.”

I called and they were able to get me in within a couple of days. I met this lovely man who walked in and said, “So you’re here for a second opinion on whether you need a bone marrow biopsy. You don’t. Are we good? See ya.” Then he laughed and said, “Just kidding, just kidding. But no, you don’t need a bone marrow biopsy. Let me show you why,” and turned the computer screen around.

He showed my husband and me the absolute newest recommendations for follicular lymphoma. It’s like a flow chart: say yes, go here; say no, go here. We got to the end, and he said, “You are a perfect candidate for watch and wait. Your blood work looks good. You’re healthy. All we know about your cancer is that you have it. We don’t know if it’s getting better, worse, or hanging out there, not causing any problems. I think we should wait.”

We asked a few more questions and he said, “Can I assume I’m your doctor now?” I said, “Yeah, you’re my doctor.” It has been amazing. It’s a small clinic with an amazing team, and that’s where I landed. I’ve been there ever since.

Realizing Stage 4 and Choosing Watch and Wait

I don’t specifically remember anyone in that timeline saying what stage I was, but through research, I realized I was stage 4 because it was outside of my lymphatic system. Those two little things that my doctor removed were not lymph nodes. They were little tumors, so I knew that was stage 4.

By that point, we had scans and knew it was in my bone marrow. We knew it was all over my pelvis and in my abdomen. There was nothing above my diaphragm, but it was everywhere otherwise. I didn’t want chemo; I knew that. I knew some people had done watch and wait.

My husband is a father of four children and a police officer, so he’s able to walk into situations and fix them. At first, he said, “Just do the chemo. Let’s get this out of your body and be done.” But then, sitting at MD Anderson, learning about the disease and the fact that we’re playing the long game, and knowing that chemotherapy, immunotherapy, and surgeries are hard, we were trying to decide what hard we were willing to live with.

Managing Anxiety, Faith, and Mental Health During Watch & Wait

Thankfully, MD Anderson connected me very quickly with Ashley, the psychologist up at Banner. I saw her weekly for a while, then every couple of weeks, and then less often. She kept reassuring me that everything I was feeling and saying was what all of her cancer patients feel, think, and worry about. We worked on a lot of grounding, being in the moment, and not wondering all the time.

I would do simple things with my kids — go to the grocery store, go to a dirt bike race, watch fireworks on the 4th of July, make a bed — and think, “What if this is the last time I get to do this with my kids? What if this is the last one? What if I’m not here when my kids graduate from high school or get married?”

I’m a Christian and I believe God is ultimately in control. He knows my story, He’s the one writing it, and I have to trust that, but that tested my faith. I have a great group of friends and one of them straight up said, “You can go as dark with me as you want. I can carry that for you.” We were doing some group devotions together and I was leaning into those friendships and my husband.

It was more the mental toll. The amazing thing about the office I was at was that I had access to a therapist and two nurse practitioners who worked with my oncologist. I would email and say, “I don’t feel great. What are the chances that it’s this?” and they would say, “It’s not. Let’s wait until the next scan.” Or, “That actually does sound a little interesting. Let me reach out to your doctor and get back to you,” and they would either move a scan up or know that one was coming soon.

They never made me feel crazy. Anybody who has been through cancer themselves or with someone they love, you get a hangnail and think, “What if that’s cancer?” You get a headache and think, “What if that’s cancer?” You can’t help it. I don’t think I obsessed so much because I was asymptomatic.

Going into my last scan, the one that determined I needed to start treatment, I was feeling so good. I felt confident this was going to be fine. My doctor and I agreed that if the scan came back looking good, we would move my scans to every six months. In this journey, you get sick of doctor’s appointments. There are so many doctor’s appointments, blood work, scans, follow-ups, and education classes. Until I had my hysterectomy, I was someone who hadn’t seen a doctor in a year. Everything looked good. I did my annual. We were fine.

I don’t think I obsessed so much about symptoms. I did have a freak out in the grocery store because I swore this cancer came from not eating organic food, not drinking clean water, the sheets we slept on, the laundry detergent, the soap, whatever. I freaked out about that. Apparently, that’s also very common.

We had a conversation about what we wanted to do for treatment. Again, thanks to Nikki getting me into that Facebook group, I was able to message my new lymphoma friends and ask, “What would you do? What are my options?” I had researched some things through some hematology YouTube videos as well.

It looked like a lot of people had success with rituximab only. I asked my doctor if that was an option for me, and he said, “Absolutely. Why not? We caught this early. You’re not sick. The best-case scenario is that we get five, six, eight, or 10 months, shrink these down, and give you more time on watch and wait. Or it doesn’t work great and we add something else,” so that’s what we did.

Then we waited from the end of June until six or seven weeks later. We did another CT scan with contrast to see what was going on, and we got a mixed result. Several of my lymph nodes shrank considerably. Some were back to normal size. The activity in general was a lot lower.

We could clearly see that a lot had shrunk, but the one next to my kidney grew through treatment and was causing issues with my kidneys. I read the report before I saw my doctor. I was Googling nephrology and things I had never searched before. It was clear that my kidney was being compromised as my ureter was being blocked by this lymph node.

We had a convening of my husband and all the doctors, trying to see what we wanted to do. My doctor at that point, again, said, “You have options. We can still do bendamustine and rituximab. We can do lenalidomide.” If I remember right, it was in August that lenalidomide and rituximab were approved for frontline treatment for follicular lymphoma, so my doctor was very aware that they had just become approved, so that was an option.

We waited again for more results. I went shopping for wigs because I thought if this was diffuse large B-cell lymphoma (DLBCL), I’m going to lose all my hair and I didn’t want to react late. I kept myself busy waiting.

Then I got the call from Dr. Peters, my surgeon, and he said, “I can’t believe I’m telling you this, but it has not transformed. I don’t know why that one didn’t respond to treatment, but it’s the same type of cancer.” The biopsy came back that way. Then we’re back at the meeting with Dr. Shelanski, my oncologist, and figuring out what my options are. Again, he came in and said, “You have choices, Laura. We can do this, this, or this,” and laid it all out. That was when we decided we were going to do lenalidomide and rituximab.

I got to share with friends, family, and my kids that this looked good, but there was still this pesky little nodule on my thyroid. We weren’t sure what was up with that, but it was a little more active than it had been.

I’m in remission from lymphoma. I still have three more months of rituximab to do the full one-year course. I’m still taking lenalidomide. We’re doing all these tests on my thyroid, and it came back as papillary thyroid carcinoma — my second cancer in two years.

For peace of mind, we did a scan of my brain because I knew we were pushing remission, and we were probably going to start pushing out some appointments. I wanted to make sure that if I had a headache, it wasn’t cancer. We did that, and it also showed a little bit of something on that thyroid. We opted at that point to do an ultrasound, which said I needed a fine needle aspiration.

Ringing the Bell and Moving Into Recovery

It’s been amazing. Nothing is an emergency for my doctor, but I don’t know if it’s good for everybody. He said, “Good job.” I said, “I get to ring the bell,” and so we rang the bell, which was awesome. Then he said, “Okay, we’ll see you when we see you. For blood work, we’ll do telehealth. Then we’ll scan and I want to see you in the office after the scan.” He likes to get his eyes on me every so often. It’s a two-hour drive for us, so it’s not the most convenient trip all the time.

But I feel like I’ve gotten good news after good news this time. You go in and they say, “That fine needle aspiration was what we were hoping,” and you say, “Wait, what?” You hit this point where you think, “Why not? Why wouldn’t there be something else?” Then we got over that big hurdle, the thyroid nodule, and having my thyroid removed. Recovering from that surgery was a lot because I was so immunocompromised. My body had been through so many treatments. That was my fourth surgery. It was a lot and my body was tired. I’m still working, and I love my job, and I want to be active for my kids.

Treatment Options, Future Therapies, and Hope

I have an awesome medical team. He knew in August that the medication was an option for me, so that’s the direction we went. Early on, when we first started with lenalidomide and rituximab, we were standing in his office and he leaned into me and said, “Laura, if this PET scan shows that this option is not working for you, we have eight other choices, so don’t panic. We’re going to treat you, and we’re going to keep you living and get you healthy. It sucks that a mom with four kids has to have this, and treatment blows. Treatment sucks. We’re going to get you through this, and we’re going to get you living.” That is a huge sense of peace.

There are options for people living with lymphoma, and those options are changing almost every day. Clinical trials are happening that I am aware of. There are clinical trials my doctor and I have talked about on this journey that would possibly have worked for me, and that is huge. I asked him, “If we know this medication worked for me, if this were to come back, could we do lenalidomide again?” He said, “If it’s at least two years, if we can get a two-year remission out of this, then yes, we can do lenalidomide again. But by then, there could be better options. There could be better medications. There could be curative therapies that are coming, and you’re going to be alive for them.”

The sense of gratitude is maybe a little better there, because you can’t walk through something like this and not grow from it. It was awesome to tell them. I picked them up from school and when we got in the car, I said, “I had my meeting with my doctor, and there’s no cancer anywhere in my body.” That was awesome to get to tell them, because that was basically a little more than two years of not knowing for sure if this would ever go away.

We didn’t get clear margins on the carcinoma, but my blood work looks good. We’re choosing not to do radioactive iodine. I’m struggling a little bit to come to terms with the idea that there might not be a day when I’m officially 100% cancer-free. But according to the scans right now, things look good, which is an awesome thing to get to tell my kids. I’m lighter. I’m hoping it makes them feel a little more at peace with where we’re headed as a family.