Lymphoma diagnosis? Terrified, any advice appreciated

Wow where do I start?! Has anybody gone through the process of diagnosing lymphoma? Does it take long? What testing do you go through? 
after going backwards and forwards to the gp feeling awful I'm here again for the past year most bloods I've had have all had raised markers....bowel issues (I go once a week ) I've constantly have chest infection s that will not go, I go through'waves' of ridiculous fatigue......to the point of washing the pots requires a sleep after it, literally exhausted in every aspect, phases on nightsweats that seem to be worst than the last phase, end up getting changed in the night because I'm soaking wet through but freezing . Anyway ended up in A&E the beginning of November...with chest pain, thought it was just a bad infection....spent the day in there having ct scan/X-ray bloods....they said my bloods were pointing towards having a blood clot on my lung?? Affter a very scary 7 hours a lung person came and told me I have nodules on my lungs, I don't have a clot, I should go home and not come to A&E due to Covid! No antibiotics nothing!

that was 5 weeks ish....since then I've never felt so rough, recieved a letter sent to me and the dr saying they found minor abnormalities on both lungs lower area.....last Monday again I went to the gp, explained how I feel still with an assumed chest infection...coughing horrible stuff up/nightsweats and got very teary about the exhaustion....falling asleep on my children waking up at 4 in the morning, they hadn't had tea or anything cannot cope with it , it's not normal! I've started having palpitations over the last 2 weeks which is a new thing and when I'm in bed it feels like my chest is 'fluttering' which is quite scary, He tried doing blood tests, none would come out, had to go back and someone else try.....had a phone appointment with him and he explained about my bloods being abnormal (low creatine/borderline kidney function/borderline sugar levels and high inflammation markers) said he was going to refer me to a haematologist for investigation and said he would send me a link for what to expect at the appointment and it would be in the next 2 weeks.........the link has terrified me it explains that I've had an urgent referral for a cancer specialist says wite a list of questions//ask what tests I'm having and why etc......I've never felt so scared! Got an appointment booking letter the next morning and it said haematology lymphoma.....no idea what to think I just keep tearing up and crying....has anybody else been through this process? Are the abnormalities on my lungs lymphoma? Is this why I've had bowel issues for so long? 

  • Hi!

    It sounds as though you're having a right old time of it :( 

    You certainly have concerning symptoms and I'm not here to say everything will be ok and "it probably won't be cancer", because plenty of people will tell you that anyway.

    If it is lymphoma, then it's a very treatable cancer, from what I've read so far, but I'm obviously no expert by any means. 

    Myself, I've got a painless swollen lymph node in my neck which has been there for atleast a month, itchy, broken skin, weight loss, fatigue, one of my tonsils has been swollen for a few weeks with no pain or infection, tight chest most days, raised platelets etc. I spoke to my GP over the phone a couple of weeks ago but I was dismissed and told to call back in 4 weeks! Ha I'm an active 28 year old man so the fatigue has been especially noticeable! 

    anyways I only really replied because you're clearly distressed by this and understandably so, and I sincerely hope that everything turns out ok for you !

    all the best

    Adam 

  • Thank you, I'm in panic mode! I spoke with the dr Monday....got the booking appointment letter on Tuesday, rang to book and was waiting for a call back but rang them back to see if I could go to a different hospital....I have been admitted twice to that one, the last stint was for 3 days in brutal agony with morphine being the only thing that helped relieve the pain, they sent me home with buscopan and paracetamol and told me they can't find the reasons behind the pain. I have no faith in there whatsoever, I should get my letter tomorrow to book at the other hospital and will hopefully be told when I'm going. I feel like I'm peicing loads of different things I've had wrong over the last year to this lymphoma thing.....in March my other dr (he left and retired) did a spirometer test and gave me inhalers to due not having full breaths, at the same time I had an mri on my back (I have scoliosis, only mild but they needed to check the extent of the curves for the diagnosis) and on the mri they found a 6 cm presumed cyst on my ovary....that was scanned a couple of months later and had broken down to 2 1/2cm.......is that to do with this? I feel like a walking illness this last year, it's been awful and to have this just before Christmas is the cherry on the cake. Apparently I will of been seen before the 17th and need to book in with my dr a week after, worst timing ever for whatever happens in this referral 

  • Gosh it really does sound like you have been through it. Be reassured that seeing Haematology is the best place to be but it can take some time. I started the process with doctors with lumps September and still not had final diagnosis. I was initially referred to ENT who did a scan and biopsy on the neck, they told me there was nothing to worry about and come back in 3 months for another scan, they weren't interested in my other symptoms or any other lumps other than the ones in my neck. So my GP referred me to haematology and it has been completely different. I have all sorts of random symptoms and they were reassuring and said their job was to piece it together and work out what's going on. Turns out scan showed suspicious lump so I am having it taken out rather than making me wait another 3 months. And have another appointment end of the month to review results and discuss next steps. So they should look at everything rather than sections of your body. Fingers crossed you get some answers soon.