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Thread: Worried about lymphoma

  1. #181
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    Re: Worried about lymphoma

    Quote Originally Posted by O_O View Post
    Yes, I mentioned the nodes came up around the time I started taking the immunosuppressant treatment, and he wasn't sure of a connection.

    What it COULD be is that my immune system was so suppressed that it allowed me to catch some weird symptomless viral infection that made my nodes swell.

    I've had the main submandibular lump for about five weeks now so hopefully it'll bugger off soon, as it's a bit uncomfortable. It also looks ugly!
    I reckon it's an after effect of the steroids, my body hates them. I had some oral prednisone (first time ever) for a weird rash (likely MCAS) and caught a cold from school 3 days into the course and I never get colds!

    It's great you were able to wait while they did the biopsy testing especially on the NHS! We have the Skin Institute down here in NZ, where you can get lesions biopsied then wait a few hours to get the results. They provide a lovely lunch (if you're not too worried to be hungry) but it's private so you pay or have medical insurance.

    It's hard not to get wound-up when there's actual visible, physical symptoms or weird stuff going on in blood tests ... it's a work in progress

  2. #182
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    Re: Worried about lymphoma

    Thanks all! Jase, ikr, seemed so dodge to me. And then the day before the scan when I realised there were even more lumps. And then during the scan he found SO MANY lumps and he was like "this one in particular looks suspicious" but by that point I already 'knew' what it was anyway so I was just sort of like yep.

    But then very interesting that despite all that Fish thought all along that it wasn't anything bad.

    Anyway whatever it is hopefully the blood tests will get to the bottom of it. I don't feel ill or anything so 🤷🏻*♀️

  3. #183
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    Re: Worried about lymphoma

    Hi guys, just an update.

    Been a bit over 6 weeks now since I noticed the swollen nodes.

    The consultant sent the following letter to my GP which for some reason made me feel alarmed:

    "I reviewed this 31 year old lady who presented with a six week history of right sided cervical lymphadenopathy. She underwent an ultrasound and FNA this morning. The ultrasound demonstrated essentially reactive changes but there was one level III node that had a slightly odd appearance. The fine needle aspirate from this, however, again shows reactive changes.

    I have therefore reassured Miss Hall of these results but, given the slight odd appearance of the level III node, I have arranged for her to come back for follow up in two months' time."

    So, I don't like how he said 'essentially' reactive changes. It's like he's saying they're essentially reactive, but...

    Also, he keeps saying about the odd appearance of the node. If he was sure it wasn't cancer, why would he be worried about this and be arranging a follow up?

    I have been totally fine since the biopsy, when he said it was all fine, and almost forgotten about the nodes, but this letter made me anxious. I've checked the nodes today and they seem no bigger, no smaller. The "odd" node may feel SLIGHTLY softer, but that may be my imagination or because they sucked a bunch of stuff out of it!

    Two other points:

    When the radiologist (not the ENT consultant) was scanning me, he seemed very cheerful. He said the nodes looked reactive apart from the one strange one (the first one that came up). I asked if it was cancer, and he chuckled and said he didn't think so. In order for him for chuckle, it seems like he must have been quite sure for some reason it wasn't cancer? Why??

    Of course they still did the immediate biopsy and analysis, given the odd appearance, and half an hour later the consultant said he was 99% sure there was no cancer.

    I felt very reassured, but since this letter I've been wondering how accurate the biopsy was (I've read less than 90%) and whether mast cells could disguise a malignancy?? But I'm not sure because I've tried to limit my googling.

    This letter just made me feel strange all afternoon.

    Can anyone interpret it and tell me what they think it means?

    I haven't had the serology results yet, which I think were for viral conditions only.

  4. #184
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    Re: Worried about lymphoma

    Hi I wouldn't read too much into this or over analyse the language or the radiologists mood, as he's likely this way with all patients!

    I think it's great that the specialist is seeing you in 2 months time, he's following up because of the 'odd' nature of the node and he just wants to re-check it.
    As the letter states, they only FNA the 'odd' node because of it's shape. On an ultrasound they can see any irregularities in the shape of the node wall (the outside lining). Obviously your 'odd' node was one of these but it doesn't mean it was cancerous. When I had my raised submandibular node, the specialist commented that sometimes they remove a persistent node mainly because it's a nuisance (uncomfortable). This may happen with your 'odd' node ... you could ask about this.

    I don't understand your question re 'whether mast cells could disguise a malignancy??' I think only the specialist could. It's good that the nodes are no bigger than before so you will be fine to wait the 2 months to get to see the specialist. You obviously have no other symptoms either.

    Don't be surprised if the serology shows nothing (no virus), it likely won't if it's something autoimmune related.
    Last edited by WiseMonkey; 17-03-20 at 05:36.

  5. #185
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    Re: Worried about lymphoma

    Quote Originally Posted by WiseMonkey View Post
    Hi I wouldn't read too much into this or over analyse the language or the radiologists mood, as he's likely this way with all patients!

    I think it's great that the specialist is seeing you in 2 months time, he's following up because of the 'odd' nature of the node and he just wants to re-check it.
    As the letter states, they only FNA the 'odd' node because of it's shape. On an ultrasound they can see any irregularities in the shape of the node wall (the outside lining). Obviously your 'odd' node was one of these but it doesn't mean it was cancerous. When I had my raised submandibular node, the specialist commented that sometimes they remove a persistent node mainly because it's a nuisance (uncomfortable). This may happen with your 'odd' node ... you could ask about this.

    I don't understand your question re 'whether mast cells could disguise a malignancy??' I think only the specialist could. It's good that the nodes are no bigger than before so you will be fine to wait the 2 months to get to see the specialist. You obviously have no other symptoms either.

    Don't be surprised if the serology shows nothing (no virus), it likely won't if it's something autoimmune related.
    The nodes did seem to come up around the time I started taking the steroids. Which is an issue, because I'll need to take steroids in the future if I'm to maintain a pregnancy.

    Cross that bridge when I come to it.

    So, do you get from that letter that the doctor isn't worried it's cancer? Despite the odd appearance? I just found the letter alarming.

    I'd sooner have the submandibular node removed, that one seems way bigger and more annoying!

  6. #186
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    Re: Worried about lymphoma

    Quote Originally Posted by O_O View Post
    So, do you get from that letter that the doctor isn't worried it's cancer? Despite the odd appearance? I just found the letter alarming.
    I think it's usual medical jargon/parlance and given their rather casual attitude I wouldn't be inclined to worry about this.
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  7. #187
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    Re: Worried about lymphoma

    The Consultant said that he was 99% sure this wasn't cancer.. That's as definitive as possible barring a histology report. He has seen the FNA report and has drawn his own conclusions. You must avoid interpreting his comments as something to be concerned about?

  8. #188
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    Re: Worried about lymphoma

    Yeah, you're probably right... I guess I would feel most comfortable with them taking the node out and doing histology. I know that's more accurate than cytology.

    The consultant I saw was the clinical ENT lead at the hospital so he must be pretty good though!

    Anyway, I have no other symptoms at the moment and I'm pretty certain the nodes are currently no bigger and I haven't found any new ones yet. Not that I'll be feeling around for them.

  9. #189
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    Re: Worried about lymphoma

    I think it’s just because it brings back the fear, it’s in writing and it’s jargon and it’s from an official. I had exactly the same feelings when I got a letter like that.

  10. #190
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    Re: Worried about lymphoma

    Quote Originally Posted by Scass View Post
    I think it’s just because it brings back the fear, it’s in writing and it’s jargon and it’s from an official. I had exactly the same feelings when I got a letter like that.
    Yeah, I guess. I guess I'm trying to work out what he's actually thinking. Like, in his head, is cancer ruled out and now he just wants to work out what IS causing the swollen nodes, like a virus or autoimmune thing or whatever? Or in his head is cancer still a possibility and something he will still be checking for?

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