I think the advice I most give when I find a friend going through something serious is, “Find your people.” Your people are the ones who are going through exactly the same thing as you are. This is not to discount the power in the friends and family who knew you before your diagnosis. They are important pillars. However, there is nothing that compares to someone who has walked or is walking in your shoes. For once, you may find someone who is saying – or not saying – exactly the right thing.
Follicular lymphoma is the 2nd most common type of non-Hodgkin’s lymphoma. Slightly more common with women than men, the average age at first diagnosis is 59. Many people have few symptoms, so it is usually diagnosed at stage 3 or stage 4. (1)
Here are a few stories from women who have received the diagnosis as well as some of their own words as to how they coped.
“I was diagnosed with follicular lymphoma in 2011. At the time of this diagnosis, I was studying to be a nurse practitioner and our class was learning to examine the lymph nodes. I had never felt lymph nodes before and, at the time, I remember thinking that learning about them was silly. My classmate and I were checking each other in the neck area and she mentioned that she could feel one of my lymph nodes was enlarged. My initial diagnosis was stage IV, grade 3a follicular lymphoma, which meant I would need to have extensive chemotherapy. My treatment was rituximab, which I had once a week for four weeks, and then again six months later for a total of three cycles. In April of 2013, I had a scan that was completely clear, and all the lymph nodes were gone. It was a great feeling for me because it was stage IV where it was just all throughout my body, above and below my diaphragm and in the bone marrow. My advice to a newly diagnosed patient is to get a second opinion and get connected with other people who have the same type of lymphoma because this made me feel incredibly hopeful.” (2)
“My FNHL was found in nodes and bone marrow, aged 48 with two teenage kids! I have 6 cycles of 21 days of RCVP and am half way now. My consultant says I am coping well as I have a strong fit body which has put me in good stead for this treatment. On the 10-14 day after chemo your antibodies will be at their lowest so avoid crowds, as infection, which your body cannot fight, could hospitalise you again. It is very important to have a Positive state of mind and ask for help when needed.” (3)
“I noticed slightly enlarged lymph nodes in my groin area. I had felt them for a couple of years, but they didn’t bother me. In 1990, over the course of a few weeks, the lymph nodes began growing and pressing on nerves in my leg, causing increasing pain. The pain became severe enough that I was admitted to the hospital for pain control and surgery to decompress the injured nerves. That surgery and a second surgery two days later helped my doctors diagnose Stage III follicular non-Hodgkin lymphoma. For the next 15 years, I went in and out of remission, my lymphoma responding to each of eight more courses of various cancer therapies, including immunotherapies received in three different clinical trials. My last treatment was in 2007, and my lymphoma has stayed in complete remission since. During my first remission, without access to the survivorship resources that are available today, my post-treatment anxiety and sadness blindsided me. One-on-one counseling proved to be incredibly helpful for dealing with my uncertainty and stress. There is no single “right” way to do survivorship. Everyone forges and follows his or her own personal journey. To others going through cancer, I recommend you obtain sound knowledge, find and nourish realistic hope, and take effective action”
1. Follicular Lymphoma. Canadian Cancer Society. http://www.cancer.ca/en/cancer-information/cancer-type/non-hodgkin-lymphoma/non-hodgkin-lymphoma/follicular-lymphoma/?region=onRetrieved 20 February 2019.
2. Juliana, Follicular Lymphoma Survivor. Lymphoma Research Foundation. https://www.lymphoma.org/storiesofhope/julianasoh/Retrieved 20 February 2019.
3. Just Diagnosed With Follicular Lymphoma. Cancer Research UK. https://www.cancerresearchuk.org/about-cancer/cancer-chat/thread/just-diagnosed-with-follicular-lymphoma Retrieved 20 February 2019.
4. Lymphoma Survivor. Patient Resource. https://www.patientresource.com/Lymphoma_Survivor_Story13.aspx Retrieved 20 February 2019.