Recently diagnosed

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Hi everyone, I’m Ben and thought I’d bring myself to the group really.

I was given the diagnosis of stage 4 FL 2 weeks ago, this is after 14 weeks of feeling really unwell - fatigued, weight loss, skin itches, night sweats, no appetite … so on and sod forth.

initially cancer was never an option or on the cards from the doctors perspective, then my CT results came back and they gave me the diagnosis of bowel cancer which had spread to the lung and lymph nodes!!! I then had a PET scan and colonoscopy which showed that in fact I do not have bowel cancer !!! But my lymph nodes where very active in the neck and groin … which lead to biopsies being taken.

I had started to feel a little better by this point as my body must have been fighting whatever was going on inside me.

lymph biopsies came back as clear, doctors were now really scratching their heads.  Which lead them to admit me to hospital, so had 3 weeks on the cancer diagnosis ward where I had 2 more MRIs, 1 CT, a further colonoscopy, bone and bone marrow transplant and daily bloods!  During this time they also re-diagnosed me with bowel cancer one morning and then told me in the afternoon (following my 2nd colonoscopy) I definitely didn’t have bowel cancer, brain officially frazzled at this point.

it was the bone biopsy that came back showing the stage 4 FL diagnosis, low level B cell lymphoma.  I’ve been told not to worry too much and that I’m just going on watch and wait for the foreseeable, until my health deteriorates or a secondary cancer rears it’s ugly head.

I have gone for a second opinion through a private consultant, I’m very fortunate to have private medical through my work, they think it all sounds probable, and all the initially mis-diagnosing were red herrings.

im still not back to 100% health and fitness levels as I’m still having weird abdominal spasms and pain, and same for my respiratory system but they have told me I’ve had a viral infection as well - potentially sarcoidosis, but this has never been confirmed, I’ve just been told to sit tight and I’ll get back to full health in time as my liver function test results have come down from 967 to 113 without any treatment.

my thoughts and best wishes are with you all that I see and read are having a much worse time than what I am, and also want to offer an ear to anyone wants to have a chat , rant, cry or laugh xxx

  • Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike  and I help out around our blood cancer groups.

    I don’t have FL but was diagnosed way back in 1999 with a low grade, rare incurable but treatable type of skin NHL Stage 4a and although my NHL ‘type’ is different I understand this journey rather well unfortunately.

    It actually took a good 14 years before I needed big gun treatments although I was having some ongoing skin treatments (hit my community name for my story)

    Living with a low grade NHL is a mindset and often seen as a chronic illness that when required is very treatable.

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

    Happy to chat.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Looks like you've had a tough time. I too had a misdiagnosis being told I had terminal lung cancer and then having that questioned and a lung biopsy changing the diagnosis to lymphoma. It's a strange situation to be in mentally and can take some time to work through. I was treated immediately and after a quick relapse and retreat, I'm now essentially back on watch and wait. It's tough. Here's hoping for a long time before treatment is necessary.

  • Hi Ben, sorry to hear you have been through such an awful time. I too am newly diagnosed 4FL but have gone from a routine blood test on 01/10/21 (as I was feeling under the weather and to be fair had some dodgy pains in my abdomen) to being admitted with an enlarged spleen on 05/10/21 to a Bone marrow biopsy on 06/10/21, anyway fast forward I had my first round of Chemotherapy (R-CHOP as I have a High grade large B-cell lymphoma) on 02/11/21. It has been a roller coaster, as I hardly had any symptoms and I certainly didn't think they were 'Cancer'. My head is fried because although I have had my first Chemo (albeit only 2 days ago) I am feeling pretty good and I'm almost waiting to feel bad, which is not good. Anyway you know who I am now, I hope you get some answers, I don't know about people having a harder time it sounds like you have been through the mill and had a really uncertain time. Being told to sit tight must be quite difficult if you don't mind me saying. I am certainly here if you would like to talk rant cry laugh etc. I am finding my dark, dry sense of humour a huge help but maybe not for everyone....  Sending healing thoughts

    Kate

  • Hi Kate,

    Wow what a speedy roller coaster you’ve been on. Fingers crossed you don’t get any bad side effects from the chemo.

    I still leant help thinking why is everyone else getting treatment and not me!! Guess I just gotta trust the process.  I’m meeting with my consultant next week for My first 6 week check point.

    my dry sense of humour has had me in good stead so far too, although I think it has annoyed some friends and family at times, but my default response to that is “what you gonna do about it, ive got cancer ! Be nice” lol , don’t think I’ll get away with that for much longer tho

    likewise always here for you or anyone that needs a chat, laugh, shout or cry

    ben x