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Non-Hodgkins Lymphoma Diagnosis

Topic: My diagnosis
Created April 4th, 2021, filed in All Cancer Types

My diagnosis of non hodgkin’s lymphoma was kind of a long process that I will share with you here.

During the Spring of 2019 I was experiencing back pain. I thought it was my lower back. I got an MRI of my lumbar spine and it showed a slightly bulging disk which seemed to explain the back pain. I started doing physical therapy to treat it. I did physical therapy religiously all summer but the pain only got worse. I also started thinking the pain was more in my thoracic spine. I got an MRI of my thoracic spine and the doctors immediately saw a tumor growing on two of my thoracic vertebrae. It was on the surface of the bones and also inside the vertebral foramen where the spinal cord is. It was pushing on my spinal cord. I was also experiencing some tingling and numbness in my toes and feet was was probably due to the tumor pushing on my spine. If the tumor got much bigger it would paralyze me. My general practitioner was the one who told me the result of the MRI. Of course I was very scared and sad. I visited HIghlands Oncoology to see what to do about it. I was hoping that perhaps the tumor was benign. My oncologist at Highlands said he didn’t know what kind of cancer it was but he was pretty sure it was malignant. Just by the way it looked. He said it might be multiple myeloma. That freaked me out because a friend of mine had multiple myeloma and it was pretty bad. Incurable. My doctor tried to cheer me up by saying if it was that it was not too bad because I could probably live for a few more years with it. That didn’t cheer me up very much. I was planning on living for a few more decades at least. I was 56 at the time. Having a few more years to live was very bad news. That was my introduction to the new reality of cancer. You were lucky if you had a few more years left.

It took a couple weeks for the doctors to figure out what to do. Eventually they did a laminectomy (removed the spinous process on the back of my vertebrae) and went in and cleaned out the tumor material inside my vertebral canal to relieve the pressure on my spinal cord. They used some of the removed tumor material for a biopsy to determine the type of cancer it was. They were unable to remove the rest of the tumor material on the vertebrae because the ribs were in the way.

A few days later I got the results of the biopsy. The cancer was nonhodgkins lymphoma. Specifically it was diffuse large B-cell lymphoma (DLBCL). The bad news was it was a very aggressive type of cancer. The good news was it was curable. The doctor’s also did a molecular analysis of the DNA in my tumor cells. Using a technique called molecular probes they were able to tell exactly what mutation was causing the cancer in my cells. This information can now be used to help determine which treatment is needed. The analysis showed that out of four common mutation scenarios, mine was the least bad. Also good news because it meant that my chances of being cured were much higher than if I had the other 3 mutation types. I didnot have the “double hit” mutation that would have been really bad.

Next I had a PET scan that showed that I had numerous tumors on bones throughout my body. I was stage IV. Very scary.

The next question that needed to be answered was “had the cancer entered my nervous system?” The tumor was rubbing on my spinal cord so perhaps it had gotten into my nervous system. That would make my chances of being cured much lower. They needed to do a spinal tap to get some cerebrospinal fluid to check it for cancer cells. They said while they were in there they would put a dose of chemo into my spinal cord just in case the cancer was there. The spinal tap was pretty painful and just a bad experience. I got my first dose of chemo which gave me headaches and made me very fatigued. But luckily the spinal tap revealed no cancer in my nervous system. Very good news. Something to be happy about.

That was the end of my diagnosis. I had stage IV non hodkins lymphoma that had formed tumors on bones throughout my body. Molecular analysis showed that the mutation that was causing the cancer was not a very bad one. It was not the “double hit” mutation that is bad news.

I have a couple comments about the diagnosis process.

I have been scared of getting cancer my whole life because my father died of cancer when I was 4 years old. I always thought that if it happened to me it would be so horrible that I wouldn’t be able to deal with it. Sometimes I thought that if I ever got cancer I would just let myself die. While the discovery of the tumor and the subsequent string of diagnostic results were very scary, I dealt with it much better than I would have thought. And so did my family. The information came in a bit at a time. Some of the information was very bad, but there was always some good information too. Something to give me hope. Good becomes a very relative thing in cancer world. Things happened very fast and I was very busy seeing doctors, getting procedures done and trying to keep my job and family together. Not a whole lot of timme to dwell on how scary and sad it all was. The whole thing just wasn’t as bad as I thought it would be. Of course, that is me talking after over a year of being in remission. Don’t get me wrong. The whole thing sucked a lot. Like the worst thing I had ever been through. But if you are reading this because you are going through early stages of cancer diagnosis, it might help you to know that you, and your loved ones, are probably stronger than you think. And, yes, a diagnosis of cancer is horrible. But people are strong and we can live through some horrible stuff.

The second comment I have about the diagnosis process is that the scientific advances in diagnosing cancer have improved drastically over the past decade or two. And they are continuing to improve. The molecular analysis of the DNA of tumor cells is a very powerful tool to determine exactly what treatment you need. Diagnosis and treatment of cancer is getting better all the time and it is resulting in better treatment outcomes of people with cancer. Despite the horrible and scary diagnosis I received I am now over a year out from my last treatment and I still in remission. I feel healthier now than before I was diagnosed with cancer. I am also hopeful that I have been cured and that the cancer will not recur. If I was diagnosed with my condition ten or twenty years ago I probably would not be alive today. A cancer diagnosis is not the death sentence that it used to be.

I'm SteveMacD, and I'm a survivor of Lymphoma

Thanks for sharing!

  • Thu Apr 8, 2021
I'm USHA P., and I'm a survivor of Stage 4 Non-Hodgkin's Lymphoma

Can you please share the type of treatment you got?
I am also suffering from the same type of lymphoma and At forth stage. Not at spine but other parts of the body, throat to thigh. Last one year’s treatment has not brought satisfactory results.

  • Tue Apr 13, 2021
Hi, I'm Gina E L.

Thanks for sharing. Will be nice to have a zoom group I think it will help a lot

  • Thu Jun 24, 2021
Hi, I'm Lisa R.

Thank you for sharing

  • Wed Aug 25, 2021