It's a Weird Situation, Isn't It?

Hi again and welcome to this little corner of the community.

Yes having cancer and basically being told to get on with living life, put your cancer on a shelf and we will keep an eye on you is indeed weird...... but great.

Many people will indeed be living for years with these types of Low Grade slow growing Non Hodgkin’s Lymphoma.

I have a different type of Low Grade (CTCL) and it took about 14 years before I needed full on big gun treatments to be used.

Do also check out Lymphoma Action, a small UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma Zoom support groups and indeed a great Lymphoma Buddy Service

Always around to help out ((hugs))

Hi Jayne

Well, while not the diagnosis you were seeking, congratulations on having it found out very early.

I was misdiagnosed over the phone twice, over a three month period, during the early 2020 lockdown: with gastric reflux and a possible laryngeal version. The symptoms of those things were what it seemed like. Then my breathing started to diminish until the morning came when I thought I might not live through the next night ... and we called an ambulance.

Almost the first thing the paramedic did on arrival, when I complained of breathing problems, was tap each of my lungs from top to bottom and declared, 'Listen to that, your left one is almost solid -- so no wonder you can't breathe!' Indeed, I could hear the difference myself without any stethoscope. 

Long story short: After a host of tests, scans and x-rays in hospital I was diagnosed with NH Lymphoma - Grade 4 - Aggressive -- with 75% of my left lung and 30% of the right filled with pleural effusion (liquid in the containing sac around the lungs), some blood clots in there for good measure and various other strange recurrent things. A 'fist-sized mass of cancerous lymph cells' also sat directly behind my stomach pushing it outwards -- that I reckon was probably causing some gastric reflux.

In retrospect, I'm pretty sure that if I had actually been able to be seen in person by either of my GPs, the first thing they would have done when I complained of breathlessness (along with other stuff) would be to tap my lungs --  like the paramedic -- and realise there was something far beyond gastric reflux.

So, I'm so glad you fought for the face-to-face. And that this thing was caught extremely early. Good advice I think: enjoy life, eat and live well!

I do worry, though, that our local GP practice seems quite keen in carrying on with the telephone consultations after the pandemic is over. I think there needs to be some form of over-riding 'panic button' that allows a patient with serious worries to actually see a doctor. We might not know what's wrong ... but we often know when something is seriously not right ... no matter how difficult it is to explain remotely.