Hi everyone,
This is my very first post on any forum, so thank you in advance for reading. My husband recently found a palpable mass in his abdomen, and an ultrasound revealed that one of his mesenteric lymph nodes has grown. The largest measures 30mm. We’re currently waiting for an appointment with the haematology/oncology team, and his GP mentioned that a biopsy will likely be needed. Needless to say, the waiting and uncertainty are quite stressful.
Some background: We first discovered his enlarged mesenteric lymph nodes back in 2016 during a routine test. Further investigations, including a biopsy at the time classified found it was benign. He had annual ultrasounds up until 2021, and the lymph node size remained stable (around 2.2cm), so he was told monitoring was no longer necessary However, last week, after feeling something unusual in the same area, we saw his GP, and upon an ultra sound we learned the node has grown to 3cm. We’re now back in a holding pattern while we wait to see a specialist, and I’m feeling understandably anxious. His routine blood reports are all fine.
I’m reaching out here to see if anyone has had similar experiences or insights. Has anyone dealt with stable lymph nodes that later changed? What kind of outcomes or next steps should we be mentally prepared for? Thank you so much. The waiting is the hardest part.
Hi blueseablue1bc56f and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husband.
I am Mike and I help out around our various Lymphoma groups.
This will be a stressful time but I will try and help you turn that stress levels down a few notches.
First some context - I was first diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) …….
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so I most definitely appreciate the challenges of this journey rather well.
If this is Lymphoma it will be in a cancer group that is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers)
Every 26mins someone in the UK is being diagnosed with one of the 60 types and sub-types of Lymphoma
Based on my story and many 1000s of people I have talked with on this platform over the years…… Lymphoma is a very very treatable type of cancer.
The fact the his enlarged mesenteric lymph nodes were first evident back in 2016……. and although biopsies were benign there was a chance that cancer cells were just not found…… this can actually happen.
Now that this has changed its positive that he is now being checked out further…….
The Diagnosis of Lymphoma requires a few jigsaw pieces to be put together to get a clear picture…… this may take some time….. but he could have been living with a slow-growing Lymphoma for years and not know about it…… that was me before 1999/2000 as most likely my first type of Lymphoma had been growing for a number of years…… in all my 25 years nothing has ever showed in my bloods - but actually lymphoma does not specifically show up in a blood test…… yes crazy - it is a blood cancer so it should!!!
A biopsy is needed to see what of the 60 types of Lymphoma this may be and a scan to stage……
But even then…… the Staging in Lymphoma is rather different from solid tumour cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies…..
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
Delving into the world of Heamatology can be confusing so these links below will help you get ready for these appointments.
Top tips for getting the best from your appointments
Questions to ask your medical team about lymphoma
In way of some further encouragement….
As I said I was diagnosed in 1999 age 44 when our daughters were 14 and 18…… I continued to work for 12 years in a demanding teaching job and yes had various treatments over these first 14 years then in late 2013 my second rare, aggressive fast growing Lymphoma came along taking me to stage 4……. but this was all remained very treatable.
So I had some intensive treatment between late 2013 to late 2015 (including chemo, radiotherapy and 2 Allograft (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 turn 70 at the end of this year and as a family we celebrated 9 years 9 months 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.
Any questions just ask ((hugs))
