Terrified I have lymphoma

Hi Audiowhy5dbf51  and a warm welcome across to this little corner of the Community.

I am Mike and I help out around our various Lymphoma groups. 

I am sorry to hear about your health concerns and I do see that you have been posting in other areas on the community……. health anxiety is a real thing but you have to follow up issues and look to get clear answers.

I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of slow growing Cutaneous T-Cell Non Hodgkin’s Lymphoma (CTCL).

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) very type of aggressive Peripheral T-Cell Non Hodgkin’s Lymphoma (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

Our Lymphatic-System is very reactive…… this is its function and can react to many things going on in our bodies.

Yes raised lymph-nodes can be a possible indication of the existence of one of the 60 types and sub-types of Lymphoma…….. as it is seen as one of the many Symptoms of Lymphoma…….. but this can also be an indication of many other health conditions,

Based on my very long experience both as a patient but also supporting others on their Lymphoma journey….. on the whole, when Lymphoma is presenting in the Lymphatic-System a node will tend to keep slowly growing, it tends not to be movable and not sore to touch.

In September 2013 I had a small node appear in my neck…… by the time I got all the scans, biopsies and results back saying had had a second, now aggressive Non Hodgkins Lymphoma it had grown to the size of a brick.

The main route to get a Diagnosis of Lymphoma is often an ultrasound……. this may then trigger a CT and/or PET scan…….. where there is an indication of activity this needs to be biopsies and the pathology results will confirm if this is Lymphoma or not.

Also important to know that in the whole Lymphoma does not show up in blood tests although some ‘off’ blood tests may trigger further investigations due to the possibility of some type of health concerns.

As to your concern about your age and allowing time to go in making outcomes unfavourable as well as you saying you are obese and you seeing yourself as unhealthy……… I would suggest that you may have been overdoing your internet searches.

The only people who are qualified to give you clear information and be able to nail down what is going on is your medical professional.

Well done making another appointment and let’s see you start to get clear answers. 

Thank you I’m a bit calmer now I have thought about it as I think for the over a month it has been there it would have grown bigger by now I think and would have had symptoms and it is moveable I will stop googling im very bad for this I will try my best to stop 

See what your Doctor says….

A good number of years ago I tested the issues of using Dr Google…… I put ‘lump in my neck’ into Google and followed the then top ‘sponsored’ hits……. within 3 or 4 hits Google was saying I had 6 months to live…… the following hit was a funeral directors site……. not very accurate or helpful.

Even before I was diagnosed with Lymphoma my Lymph-nodes went up and down (as they should) when I had an infection or a virus.

Even now, over 10 years out from my last treatment I have had a bean sized, movable lump in my neck…… due to my history it was checked out 10 years back and found to be a harmless fatty lump.

Google is great for a lot of things but when it comes to our health it’s an anxiety amplifier.

I think every GP should have a sign like this up on their wall……

Oh ok, and I see ok and yeah they should do haha

Hello - (for the sake of The Highlander - Mike - I have had problems logging in -  hence name change) Audiowhy5dbf51. As ever I agree with Mike - according to Dr Google, I could be having a baby (difficult since I'm an 80 year old male but ever hopeful) or a stick of rhubarb up the nose cures anything.

But joking aside, the only way anxiety can be properly contained is via the medical profession's diagnosis which helps put what is happening into context. And to be open, lymphoma can be difficult in some circumstances to diagnose. It took medics 18 months in my case. Then 4 years of treatment. And in a couple of months, 2 years after treatment has finished, I hope to be told, as far as they can be certain, I am clear. You are a mere whipper-snapper. Even if you have L your chances of living to my age are very high.  Of course I hope you have not got it. But if you have, and if it is any consolation from my experience, the treatment centre will do everything possible to succeed - lovely people. So get to your GP asap!

And meanwhile get plenty of hugs and laughs

So have a (long distance) hug from me,

Pete

thank you so much and thank you for your kindness I’ll be seeing my gp soon not long now