Waiting on biopsy - possible lymphoma

Hi everyone :happy:

I'm Scott, I'm 28 & currently waiting on a biopsy result that is driving me mad even though I knew it would take a week & I only had it yesterday haha.

I have to say this forum has really helped me over the last two months and thought I'd post to share where I'm at.

In December I noticed some swollen lymph nodes at the right side of my neck in a straight line from behind my ear down to my collarbone. They were initially soft & movable but over the 4 weeks I was watching them they got slightly larger (about 1.5cm) and firmer. I called my GP at the beginning of Feb and booked a phone appointment 14 days later & then got a face to face appointment a week after that. By this point my nodes had softened and got quite small. My GP did a full examination and couldn't detect palpable nodes anywhere else but booked me in for a blood test 10 days after this. Waiting times in London for GP appointments are clearly bad but I was grateful she ordered the bloods. About 3 days after my first appointment, my supraclavicular node that was raised and floating around my clavicle became solid and filled the gap in the hollow of the right of my neck and was protruding, aching & particularly painful in the morning. After a few days of watching it I called 111 as my GP said if there are changes to book in again however when I tried the waiting time was 3 weeks. 111 then gave me a referral for the next day at my GP surgery (thank god)! My GP then measured my worrisome node at 3cm in diameter and referred me to Haematology on an urgent basis. The hospital called me the next day and booked in my appointment for the following Thursday (7 days later) - I was relieved. 
 

At the hospital I saw my consultant who again did a thorough examination however my nodes had gone down significantly again by this point. The suspicious node by the collar bone had shrunk & gone flat and movable. She told me that she doesn't think I have cancer & that the reason I've lost weight over the last 6 months (2stone) is down to me training for a half marathon and cutting carbs. She told me all my bloods had come back fine but that I should have a chest X-ray & ordered more bloods that I did right after my appointment. She said she'll arrange an ultra sound on my neck just in case and if the consultant sees fit, he'll do a biopsy too. By this point I'm super relieved she thinks it'll be a simple infection. Up til now I've been so worried it's been really affecting my day to day life. I don't suffer with anxiety and I've just felt like something isn't right. It's been awful. So this opinion was welcome.

A day later I got a call from the hospital booking me in for my ultrasound biopsy in 2 days which was odd as I was told it was going to be within 4 weeks but obviously I was happy to get it done out of the way. So here I am... had my ultrasound & the consultant told me he will be doing the biopsy as it's highly suspicious. Interestingly he took from deeper into my neck closer to my neck muscle but not any of the nodes I'd been feeling. He kept telling me that he thinks it's a lymphoma but it could be benign but he'd put money on it being lymphoma. He took 4 samples. Obviously I'm now very worried and gutted as I'd got my hopes up it was nothing since my last appointment. He did keep saying I shouldn't worry as treatment is great & I'll be fine but just feel like I'd have preferred it if he hadn't kept saying how certain he was when none of us actually know yet & the hunch was the opposite to what my haematology consultant had told me. I haven't had any other symptoms & don't know results of 2nd lot of bloods or x Ray. 

My thoughts right now are... prepare for the worst but try & remain positive even though the worry is all incompassing. I'm wondering whether they saw something in my chest x Ray which is why they got me straight in for the ultrasound? Maybe I'm over thinking that. I'm also slightly peeved that the doctor let on so much what he thinks it is to such an extent as now I've just got to wait a week.... 

Sorry for the essay haha but felt writing it all out would help. Hoping the doc was wrong!! Thanks for reading. 
 

Scott

 

  • Hi just read your post! I know the pain your in! And frustration! I found a swollen lump either side of the collorbone in jan! Went to doctor google and been worried sick ever since! Mine are sort and squashy! Went to fox who said I have to have them for 3 weeks before they can do anything. 3 weeks later had a phone appointment who said will book me in with an ultra sound within two weeks. Three weeks later I chase it and told there's a backlog! 6 weeks later ( today) I call again and apparently my referral got lost and now found it! 
    min the meantime they haven't gone, have a painful shoulder ( which I've had for a year) keep getting spots, extremely itchy scalp ( which I've now read it a symptom) and so now am freaking out!!!! My bloods were fine but after reading some posts this means nothing! 
    glad your going to get answers soon and keep my fingers crossed!!!!!!

    x

  • Hi WorriedWart!

    thanks for responding! There's nothing quite like this waiting. My partner is obviously going through it as well but we've both got different ways of dealing with it. I'm trying to accept that it could be bad news so that I'm ready when I get the news whilst my partner is trying to be ultra positive... which is also understandable & I'm normally the same but I think rather than being devastated and surprised there and then I'd rather come to terms before & if it's good news then happy days. 
     

    yes I've been partial to listening to doctor google too. This is the only forum I'm reading now haha. In terms of other symptoms I'm sorry you've got the itching etc that must be a nightmare! I'm always wondering whether I've got some of these symptoms whenever I get one itch but know it's only if it's severe. It's so gutting that bloods can be fine & not show much. Mine are all clear as far as I'm aware too which you'd think would give me hope! 
     

    I hope your process speeds up a bit and you get your answers! I'm in two minds whether early results are good as usually that means bad news. The wait continues!! 

  • Just updating this...

    Had a call from my consultant saying that the biopsy didn't really give enough info. I mentioned that the doctor doing the biopsy strongly suggested lymphoma but she brushed this off in a way & said they need to do a PET scan to find out what's going on.

    After an hour of actual panic & hyperventilating which is very unlike me... I'm now calmer and just hoping the PET scan will give more clarity.

    Stressful times! 

  • Oh good how very stressful but no news is good news I've had to tell myself. 
    so thought I'd update, had my scan and been told the lump/ swelling is nothing to worry about at the moment! He said it is an uneven distriputaion of fat and that it maybe there forever! 
    the relief was unbelievable and I felt 10 ton lighter! But then a small part of me thought " has he got this right?" But if I go down that road il be back to square 1! I just have to think of it was something it would have showed Surely! 

  • Hi all - just wanted to update you on my cancer journey.

    I had my diagnosis today... Stage 3 Classical Hodgkin Lymphoma. It's likely to have started in my abdomen, moved up through my chest and then became palpable in the neck, which is when I noticed the lumps. Prognosis is good. 97% cure rate for someone my age (28) with zero symptoms other than the swollen nodes.

    I start ABVD chemo in 10 days. In the mean time I'm having my sperm frozen & getting COVID jab etc.

    The relief is unbelievable. The process & the not-knowing is now over so I'm super positive & eager for treatment.

    All the best. X