Morning all,
I am New to this group. Dad was told he has inoperable esophageal cancer stage 4 - however 4 biopsies have shown no cancer cells.
We are on Week 9 now - and we are still exploring possible causes!
Dr’s have now suggested possible lymphoma - which can act strangely.
Anyone had anything similar?
Thank you in advance.
Hi Moon3 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your dad.
I am Mike and I help out around our various Lymphoma groups.
For some context I was diagnosed way back in 1999/2000 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell Non Hodgkin's Lymphoma (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.
Lymphoma can indeed be a strange cancer..... over my 25+ years on this journey I have talked with many many people who related a story that is very similar to your dad's, in that people are investigated for one type of cancer or just a medical condition and Lymphoma is found.
Indeed people can be living normal lives with some of the slow growing types of Low-grade non-Hodgkin lymphoma for many years and it's found by accident.
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) with someone being diagnosed every 26 mins......... but the complication comes as there are actually over 60 types and sub-types of Lymphoma...... as you see from above my 2 types are in the very rare category........ and compared to other 'solid' tumour cancers like Esophageal Cancer.... Lymphoma is a completely different world.
When I was diagnosed with my first Lymphoma back in 1999/2000 I was only presenting to my great GP with a developing rash on my back...... no other classic Lymphoma Symptoms.
We spent a good number of months trying all the skin treatments in his tool kit....... but eventually agreed that we would have to get me seen by Dermatology.
Unbeknown to me at the time my great Dermatologist was 99% sure as to the rare type of Skin NHL I had but he needed the proof...... this took a further year, 6 biopsies and a few CT scans.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am over 9 years 9 months out from my last treatment, I turn 70 this year and I doing great.
If this is a type of Lymphoma...... compared to his original inoperable Esophageal Cancer Stage 4 diagnosis........... even with a Stage 4 Lymphoma diagnosis... as I had in late 2013....... this is a completely different world.
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 (as this is a Blood/Lymphatic cancer it can basically present anywhere in the body)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
What to do now?...... your dad needs to be referred to Heamatology who will go through the Diagnosis steps to see if he does actually have Lymphoma.
I am always around to chat.
