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

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Hi all,

I was diagnosed March 1st this year, purely by accident after my GP red flagged my gastric symptoms and thank goodness she did!

I have fought to see a specialist right from the beginning and I finally saw one on Monday this week (14th June), my other appointments have been via telephone, no-one has ever examined me or spoken to me face-to-face, other than radiographers for my scans. This appointment was meant to be on the phone, but I insisted that it was face-to-face, and it was changed.

The doctor was one of the main ones in the haematology/oncology unit and I was relieved that it wasn't the last one I spoke to on the phone, because he was very abrupt and sounded like he couldn't care less about me or my situation. She was so lovely, explaining all my test results (all fine, including my white blood count and kidney function) and examining me thoroughly. She also told me that it has been caught extremely early, with the chance that I won't need treatment for years yet; I am to enjoy life, eat well, live well and see her every 3-4 months! To say that I was relieved is an understatement after reading about everyone else's treatments, stages, etc, etc, etc.

But now I feel such a fraud...had I not spoken to my GP about my gastric problems and the following endoscopy failed, I would be none the wiser and just living my life until such time as symptoms begin in earnest.

  • 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))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • 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.