Well, this whole journey becomes more bizarre each week ! Sorry if this is long, I've tried to condense it as much as possible.
A week ago my son saw his consultant, who is a professor & clinical director of Haematology. He was told his tissue samples were not back yet & apologised because instead of being sent to Leeds to be reviewed they'd been sent to their own labs & then forwarded on however, their own labs confirmed lymphoma butter didn't have the resources to type & stage & Leeds needed to do that. Professor said given all they had so far, he was 100% confident to officially dx lymphoma & he booked my son into hospital as an in patient to start chemo last Thursday because samples would be back for MDT meeting on Tuesday to discuss which chemo would be given & because my son is so unwell & because of time lapse it was urgent he began chemo straight away without delay. He said he was away & couldn't be at the MDT but macmillan nurse would phone Tuesday to give info needed for admission & chemo.
We made plans for the Thursday & my son mentally prepared for the chemo which meant a lot of emotional support from me & we felt like we were finally on the way to getting him better etc but, on Tuesday macmillan nurse rang & sent us into a state of complete flux !! She said there would be no chemo starting because tissue samples had come back all clear & my son DID NOT have lymphoma & DID NOT have any cancer ! She said Radiologist said at meeting there was no lymphoma, or anything indicative of a malignancy on his PET scan. She said it was good news !
Well, I can't start to describe what this phone call did to both mine & my son's minds, he had a complete meltdown (I think I've explained before he's on the autistic spectrum) & I was bewildered after 3 months of being told this was lymphoma & discussing treatments, 4 of those weeks spent as an in-patient, heavy doses of morphine & steroids ! The nurse couldn't answer any of our questions said he would have another PET scan in 3 month & that he had an appt to see the professor last Friday.
At appointment on Friday the professor began by apologising for what had occurred. In a nutshell (I know I've rambled on too long) he said he couldn't explain the tissue sample, if he'd been at MDT he wouldn't have accepted anything that had been said & that he was still 100% that this was lymphoma. He showed us the original PET scan & talked us through it, it was startling to say the least & most striking was the radiologist report which stated lymphoma strongly indicative of stage 3 low grade lymphoma. (Why in MDT did radiologist say PET scan was clear ?)
Professor said he had never seen clinical presentation more definite of lymphoma & he'd discussed the case with 2 senior eminent colleagues who were of the same opinion. He said all 3 of them looked for a differential dx but he said there was nothing else that they knew of that this could possibly be. He examined my son & confirmed his spleen is swelling again (after steroids had reduced it) & is hardening.
We spent an hour with with the professor & all of our questions were answered. So, where are we now ? Still with lymphoma & another PET scan this week & then Prof will discuss with surgeons about how best & where to get further tissue samples & a return appt in 2 weeks but the urgency of getting chemo started was again highlighted.
This roller coaster just doesn't seem to end. Is this situation usual ? Also, we forgot to ask at our appt; we were originally told the tissue samples had to reach Leeds labs & be looked at the same day as taken (apparently they couldnt be preserved as this would destroy lymphoma cells)hence early morning surgery, as these were sent to the wrong lab & delayed in getting to Leeds, does anyone know if this could this have affected the results ?
Thank you for taking the time to read this long missive, if nothing else it helps to 'get it out'.
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Sorry to hear the journey continues but unfortunately this can happen, a lot.
For me, my consultant was 99% sure as to my type of NHL but it took 6 biopsies and a year to get the truth but my condition had not progressed so it was not immediately a problem.
Over my years supporting on here and through Lymphoma Action your sons story and journey to diagnosis is not that unusual….. it happens a lot as at times Lymphoma can be so visible but the pathology just does not show up.
I had another biopsy back in 2013 just before my main treatment journey started and this was sent to a few labs across the UK over a period of a month and these transported ok as the samples are kept in a preservative substance……. could the cells be before getting to a lab - no idea.
Let’s look for this to move forward and get some clear treatment plan in place ((hugs))
This us the advantages and indeed disadvantages of MDT. His consultant not being there most likely allowed the discussions to be sidetracked but I am sure that his team are going to push on with getting to the truth and moving a treatment option closer.
This indeed is a battle between the ears and posting in here will help but you may want to consider calling Lymphoma Action support line on 0808 808 5555 where you can talk with a great team of people (I know them all) that have lots of experience in support folks like yourself navigating this most challenging part of the Lymphoma journey - open every week day from 10 till 3 (but not Bank Holidays)
((Hugs))
