Hey guys,
I'm 42 from Melbourne, Australia normally fit and well and back in January this year I got a pretty sudden onset excruciating Abdominal pain that landed me in the emergency department for the night. They treated it with some heavy pain meds and by the next day I got discharged home as the pain had mostly resolved. While in the ED they did a CT and I was visited by two specialists through the night. A gastro doctor which made sense, and a haematologist. The gastro doctor asked some questions, said he's follow up and left it at that. The haematologist said there were some swollen lymph nodes in my mesentery which I half expected due to whatever was causing the abdominal pain. He said to me pretty bluntly that they could be reactive or Lymphoma. Just like that. Lymphoma entered my mind at that point and hasn't left it since. He said we'll do a follow up CT in 3 months and that was the end of our time together.
Fast forward 3 months and there was no change on the repeat scan and after a telehealth consult with the same Haematologist he said he's pretty sure its Follicular lymphoma. He sent me for a PET scan (at my request) and that further correlated with his suspicion of a low grade lymphoma. He's now referred me to a surgeon (again at my request) who I see next month to discuss biopsy of the mesenteric lymph node because it deep and hard to get to by other means.
According to the PET scan there are some small ones lighting up in my armpits and groin. They're unsure if they're reactive.
So here I am. I've kind of accepted that I've got a diagnosis of Follicular lymphoma unless the biopsy comes back negative. Also REALLY hoping its not an aggressive type but so far nothing is suggestive of that.
I wish I could say I had a supportive partner and although she's been intermittently supportive throughout the process so far but is experiencing significant mental health challenges.
Reaching out here for support from people in a similar situation and looking forward to connecting and sharing our journeys.
Much love.
Dim
Hi Dim Dim83 and a warm welcome to this corner of the Macmillan Community but I am sorry to see you joining us…… and an extra special welcome from……. what ever the opposite of ‘down under’ is?…… as Macmillan Cancer Support and this Community are part of the UKs largest UK Charity…. but we do have visitors to the community from time to time from around the world.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Follicular Lymphoma (FL) but for context I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 43…… when my first rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so I most definitely appreciate the challenges of this journey rather well.
These early stages of Diagnosis can be very stressful and confusing but once you get a clear diagnosis the noise between your ears will call down.
The Haematologist who mentioned FL is definitely taking an educated shot in the dark as until a biopsy is done and the results are in this could actually be any one of the 60 types and sub-types of Lymphoma……. or something completely different.
Back in 1999 my great Dermatologist was 99% sure as to me having a very rare skin Lymphoma but it took a full year, 6 biopsies and a few scans before we got the evidence.
But if this is Lymphoma, be it a Low-grade non-Hodgkin lymphoma like FL……in the same grouping that my first Lymphoma is in……… or a High-grade non-Hodgkin lymphoma…….. the same grouping that my second Lymphoma is in……. and based on my long experience these all remain very treatable and in comparison to most other ‘solid tumour’ cancer types……. even the most aggressive Lymphomas with a high Staging…… these remain very treatable.
Our daughters were 14 and 18 when I was first diagnosed and I continued to work for 12 years in a demanding teaching job until I retired…… yes had various skin treatments treatments over these first 14 years but continued to work and live a normal life.
My second Lymphoma appearing in late 2013 threw a spanner in the works triggering some intensive treatment between late 2013 to late 2015 (750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants)
But we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turned 70 back in Nov last year and I am coming up to 10 years since my last treatment.
I am living a great life and we continue to look forward to what else life has in store for us to enjoy…….. this can be done.
Always around to chat and answer questions.
Hi Vee Tola and I see it’s your first post so a warm welcome to the community.
If you tell me more about your situation I will be able to direct you to the best part of the community so that you can get support.
The Community has to main areas…. the following link….. Cancer Specific Groups will take you to all our dedicated cancer support groups.
This second link…,,, Cancer Experiences Group has many groups covering all aspects cancer journey.
