Dana Adams

First post: Aug 31, 2022 Latest post: Mar 12, 2024
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My Story: Beware, I have a potty mouth, read at your own risk and this is a long “story”.

By a fluke, my mom found out she had breast cancer at the young age of 47. She fought a long hard battle for 15+ years and passed June 22, 2005. Due to her age at diagnosis, our primary care physician (PCP) had my sister and I start our mammograms early. I had my first baseline mammo at 38. Close to a year later, the bank I worked at was hosting a Mammogram party to promote health and wellness and early preventive care. Of course I signed up for the free massage, free wine, free chocolate, and free paraffin wax right away (And, the dreaded mammo!). Yes, the mammogram party was a thing, yes it was weird knowing all your lady friends were getting their boobs smashed, but……. Less than 24 hours later I had several calls from a number I didn’t recognize. Of course I ignored the messages because 1) I was at work 2) I didn’t know who the heck was calling. The following day my doctors office and the Mammogram party people were again blowing up my phone. I learned I had an abnormal tumor that needed checked out further. The next steps included a breast sono, visit to a surgeon, biopsy and two and a half months of waiting for the pathology report. December 23, 2010 walking into Nebraska Furniture Mart in Kansas City, I found out I had a rare malignant phyllodes tumor. At the time, these types of tumors were not responsive to treatments other than to remove it and hope they took a wide enough margin to get all the bad cells. If these types of tumors grow to large and/or metastasize it’s pretty much game over. Why did it take so long to get the result? The two local pathology offices had never seen that type of “specimen” and was not able to accurately type it. It was finally sent to the Mayo Clinic where they provided the results. Two surgeries and a hell of a lot of mammograms and sonograms later, I got the all clear.

Fast forward, 2018ish, my oldest daughter had a large lump (over 3cm) removed. Due to its size and how fast it grew, her breast surgeon recommended I do a gene test to determine if I had the BRCA 1 or 2 genes (breast cancer genes). If I did they would make the assumption my kids do too and we would determine a preventive treatment path for the three of us. Surprisingly, I do not have the BRCA genes, but instead lost the gene lottery and found out I have a TP53 gene mutation. It is hereditary, most likely from my mom, but we will never know for sure. Below is a link that explains it in more detail, but basically, shit doesn’t work like it should and I am high risk for a variety of cancers and have since become a human pin cushion. I have been scanned head to toe multiple times, have blood work every quarter (well, I’m supposed to, but skip it once in a while), pelvic sono’s, breast MRI once a year, a mammogram once a year and lord knows what else. I have a spreadsheet to track all the “stuff”. What we’ve learned is I have a small (pea sized) benign meningioma in my brain (not a big deal), a large kidney stone that looks like a thumb and at the time more suspicious breast tumors. More biopsies and more body scans, and in May 2019 I had my ovaries removed and everything appeared to be on track. Why the ovary removal? My gynecologist basically said she would not be my doctor anymore if I didn’t have them removed. With the gene mutation I was high risk for ovarian cancer and if I did get it I would be dead before I was even diagnosed. That was reason enough and we removed those babies. I was immediately in a hormonal spiral. It was not fun. I cried a lot. A lot. On planes. In the car. At work. Everywhere. For no reason.

Within the last year I find I’m extremely tired all the time (more than normal), have a lot of joint and muscle pain, especially after working out or walking and experiencing the dreaded weight gain. It was all chalked up to working a lot, being thrown into full blown menopause and it’s just what happens at my age.

I was on a work trip in St. Paul, MN mid to late May and noticed a lymph node on the right side of my neck was the size of a pea. I didn’t think much about it. I assumed I had COVID and didn’t know it, and it was my body trying to fight off the infection. A couple weeks later I was in Boston for another work trip and noticed the lymph nodes on the entire right side of my neck and top of my collar bone were all swollen. Still didn’t think much about it. I landed on a Thursday night, was super stiff from traveling and working out and went to get a massage on Sunday. If you live in Wichita, you really need to go see Frank and Jimmie in the Town West Mall. They are the best Asian Massage Therapist in town and they are reasonably priced. It does hurt like a mother, but you will feel better the next day or two. Anyway…..Jimmie is my guy and as he was doing his thing, he felt my lymph nodes for a few seconds and then just skipped my neck. That was literally an “oh Shit!” Moment. Jimmie didn’t say anything to me, basically because he doesn’t speak English, but I knew immediately something was wrong. Actually, the only words I’ve ever heard him say are “How you doing Ms. Lady?”, and “that will be $100”).

I did see my PCP that week, the week after had a sonogram on my neck, the week after that saw a surgeon, the week after that had a lymph node removed, a week after that found out I have small lymphocytic lymphoma (SLL), and the following week meet with the oncologist (Cancer Center of Kansas - Dr. Nassim Nabbout).

Dr. Nabbout did another blood test and CT scan to see if I have other enlarged lymph nodes or other symptoms internally. The CT scan confirmed I do have several enlarged lymph nodes in my abdomen. Not super enlarged, but enlarged. I tried to convince him these several enlarged lymph nodes are the cause of my weight gain. He did not confirm my self diagnosis and said it’s due to too much food.

What is SLL? SLL is the same thing as chronic lymphocytic leukemia (CLL) and they are treated the same. Lymphoma starts in the lymph nodes (duh!) and leukemia in the blood or bone morrow. SLL is slow growing, not curable, but treatable and can turn to a more aggressive form of lymphoma over time.

What stage? Don’t know, forgot to ask🤣. But at this point doesn’t really matter.

What’s next?
I start a targeted therapy which consists of 8 IV treatments over the next 6 months, and two pills a day for 12 months. The good news: because the treatment is targeted the side affects are much less than if I were doing chemotherapy. If this was 5 years earlier the treatment plan would be chemo. Chemo kills all cells both good and bad and causes a lot of side effects and hair loss. Targeted therapy kills specific cells that are dividing and growing rapidly. Dr. Nabbout assured me I will not lose my hair so that is a huge plus. I know it’s dumb, but that is the thing I have been worried about the most. I have an onion head as it is. An onion head with no hair is not a good look. Thank goodness for medical advancements.

When do I start?
The first IV treatment will be split into two sessions. The first session is 9/1, the second 9/2. The second treatment is 9/9, then 9/16. After that the remaining 5 will be once a month. After the third session I will start the daily pill regiment.

Why do they split the first treatment?
They split the first IV treatment to avoid overloading my kidneys with dead cancer cells and causing kidney damage. I’ll be drinking a lot of water once I start treatment and they will monitor kidney function through the treatment series.

What’s the prognosis?
The treatment has a high success rate and the goal is remission. Once I’m in remission then we monitor the situation and basically rinse and repeat as many times as needed. Again, SLL is not curable, but treatable. The oncologist said I may have fatigue from here on out, but just going to play it by ear. If you see me out and about and I’m asleep, just nudge me to stop my snoring and wipe my drool.

Below are few websites with more information.

TP53 Gene Mutation


Dr. Nassim Nabbout
https://www. https://cancercenterofkansas.com/medical-team-member/nassim-nabbout-md-facp/