Really, really scared now

[purplexbutterfly]

I posted a couple of months back about the doctors querying lymphoma after they found lymph nodes were large when I had a CT head and neck when I came down with meningitis. I had needle aspirated biopsy which failed and results were inconclusive. Doctors decided that if it was due to infection, they would do an ultra sound neck scan a month later and if enlarged nodes were due to infection, they should have gone down by then.

A month passed and I had my USS neck and the radiographer told me that the nodes had not gone down at all. I was due to see my consultant a month later and he re referred me back to ENT. Consultant wanted ENT to do lymph node biopsy and the next day I saw ENT who decided they would do the biopsy. So on Friday I had an operation to have a lymph node removed for biopsy. Before the op the ENT surgeon said I had a really, really, lumpy neck and joked that he was spoiled for choice to decide which node to remove. After the op surgeon came round and told me the lymph node he removed was the size of a golf ball which I don't think anyone was expecting. This kinda alarmed me and I am now so worried. I will find out if I have lymphoma or not on Thursday.

I don't know what I am expecting from posting this. I am just feeling upset and scared I guess. I don't know if I am looking for reassurance or if golf ball sized nodes meant that something is wrong. :(

[Ken_PA]

Congratulations on your great news.

That might be coincidence, or it might be that the largest node was hosting the infection and emitting lots of signalling molecules that were stirring up the other nodes. If so, then ironically the biopsy was also a treatment.

Thanks for posting the end result... and have a Merry Christmas :)

[purplexbutterfly]

Very good news guys. I don't have lymphoma. I still have many enlarged nodes in my neck but it is due to my glands being reactive from the nasty virus I had back in September which caused my meningitis and my recurrent tonsillitis. So whatever it is, since August my body is still fighting this nasty infection which *****. They didn't say what type of virus it was just that I didn't have lymphoma. I have to say thought strangely enough, since they took the biggest lymph node out (golf ball sized one) my other cervical node in my neck seems to be going down as it is less palpable and then the nodes behind my ears and around my collar bone are still there but going down. Maybe just coincidence. But thank you for the support guys it means a lot. Big hugs.

[Ken_PA]

Right, since they didn't know what the cause is, they can try to treat with antibiotics and see if things improve - because the antibiotics are not a risky Tx.

Also, many/most viruses are not susceptible to the current assortment of antivirals. It's not the same situation as with antibiotics and bacteria.

I assume your CBCs were okay or you would have mentioned that. So that seems to say that you have some unusual or atypical infection, and maybe a virus is really your current problem. But I'd still read up on Hodgkins Lymphoma, so as not to be surprised when you talk to a doc. I've heard that in U.K., they don't like to discuss/explain a lot with Pts.

[Mochadelicious]

It's a strange dynamic that is produced with in a family when someone is diagnosed (or could possibly be diagnosed) with cancer.  I'm sure your family is just as scared as you but they don't want to show that side to you because they don't want to scare you.  For me, as a patient, I felt like I had to always be positive in front of my family because I didn't want to scare them.  What resulted was isolation between me and my family because no one was really able to speak of their fears openly with eachother.  I understood it, but I didn't like it.  In hind sight, I probably should have utilized the counceling services that were provided to me as a cancer patient.  You might consider that too if you're diagnosed.  

[purplexbutterfly]

Mocha - The wait is just, annoying. The days seem to be going so slow but I am just so close! My family just seem to want to sugar coat things a little whereas in my mind I have prepared myself for the possibility of bad news and have planned certain things just in case and my fiance especially doesn't get why I have he just seems to think you should wait for the results before you start thinking ahead. But I can't help it, I think in my mind if I am prepared, then the news won't hit me as hard if it is bad news. If that makes any sense?

Ken - Erm, with alcohol no I haven't had any pain whilst drinking alcohol in my nodes. I don't really drink but the last time I did drink I got terrible stomach pains but I think it is unrelated. Not sure what mono is, but since August I have had tonsillitis 3 times when I have never had it before. And this year in general have come down with more stuff than I have in the past 5 years put together. Normally I am very healthy and very rarely come down with colds etc. I just remembered something. When I was in hospital with meningitis, I had the viral type. So I had my anti virals to treat it but they also treated me with quite hard anti biotics for a while, I don't know if they were hoping the nodes would go down with the antibiotics? I had very high doses of metronidazole and amoxicillin IV.

[Ken_PA]

did you happen to have any alcohol lately and experience any pain in nodes or jaw? did you have a bad case of mononucleosis at any time in the past?

Hodgkin's Disease is very treatable, though Rituxan hasn't been generally used for that, as it has in non-Hodgkin's. If necessary, I'd look into using things like melatonin in order to minimize any problems from treatment with x-rays or chemo that might occur 30-40 years down the road.

Good luck, it's still possible for the diagnosis to go any which way.

[Mochadelicious]

Sounds like you already have a positive attitude which is awesome.  The wait is so hard isn't it?  It's wonderful to have family and friends around for support, but you're right, it's just different talking with others who've been through it too.   That's what we're here for.  

[purplexbutterfly]

I have done quite a bit of reading up on lymphoma and what I have read is very positive and reassuring. I do think the worst thing is the wait which I think is driving me crazy now I am that much closer to a definitive answer. I haven't been obsessing too much apart from the past couple of days simce the biopsy but I am constantly reminded of it by the pain in my neck (literally lol!) Thank you for the supportive comments it means a lot whatever the outcome because I have felt quite alone because my friends and family just don't understand how I am feeling or where I am coming from with my views. So once again, thank you.

[Mochadelicious]

You are welcome.  Yes, needle biopsies are not really a very good way to do a biopsy because it's hit or miss, literally.  The excissional biopsy you had that took out the golf ball sized lump should be much more conclusive since they will have a lot more tissue they can look at under the microscope.

Also, I'd like to warn you that much of the statistical data that you find on the internet regarding lymphoma is incorrect or no longer valid, especially since they started using Rituxan (a monoclonal antibody).  I say this because I imagine you've done a million web searches on lymphoma already.

If you do have lymphoma, there are so many variables that doctors look at when giving a prognosis.  As you probably already know, there are many types of lymphoma, some aggressive types and some very slow growing (indolent).  The good news is that most of the aggresive types are curable.  Indolent lymphoma is not curable, but does typically respond very well to treatment and is quite managable.  Not to mention, you have age on your side.  

[purplexbutterfly]

Thanks guys. Just to note when they did the needle biopsy, it was a failed biopsy and results were inconclusive which means I was not told of any possible results as they were not reliable. I should have mentioned that since I posted till now the symptoms I have had are fatigue, appetite loss and for the past two weeks or so really bad night sweats and as far as I know I am cold/flu/tonsillitis free and have been for about three weeks. On my US scan the radiographer said something about the shape of my nodes. He said the with lymphoma they remain circular shaped but just enlarged and he said that mmine looked like that but reassured that it could still be nothing.

The ENT doc who came round to see me after the surgery didnt really say much. He just said my node had been removed successfully and that it was the size of a golf ball. So really I am kinda complicated and have been from the beginning. I remember the radiographer saying though that what he saw looked very much like the early signs of lymphoma but he has also seen cases where although it looks like lymphoma, it isnt.

[Mochadelicious]

Hi there, purplex.  I do remember you from when you posted before.  I have to say that Ken makes some very valid arguements for this not being lymphoma.   Other than being quite large, did the surgeon think the lymph node looked suspicious?  They often can tell just by looking at it if it's cancerous.  The lump that the ENT removed from me "looked cancerous" according to the doctor.  Of course they couldn't say for sure until they biopsied it.

Try and think positive, although I know it's hard.  Keep in mind that the only way to confirm lymphoma is with a biopsy, so no matter what you should get a definative answer on Thursday.  I think the hardest part for me was the wait, because at least if I knew what I was dealing with I could finally start doing something about it.  

Please keep us posted on your biopsy results.

        

[Ken_PA]

Hi, factors that tend toward NOT being lymphoma would be:

- your initial symptoms (I looked up your Oct post) seem more like infection
- if nodes get scar tissue (aka fibrosis) then they won't go down; if so, they would likely be firmer/harder than an ordinary reactive-enlarged node
- there are also long lasting infections in the world, e.g. Lyme, Epstein-Barr, various herpes, chronic fatigue, mystery viruses that aren't fully understood
- maybe you have a very reactive immune system
- if they were lymphoma, the US would likely have spotted signs
- cancer, given enough time, would have invaded outside the boundary of the node and that would have been visible to the surgeon
- at your age, Hodgkin's Lymphoma is more likely that non-Hodgkin's, and that diagnosis might be easier to make via needle-biopsy because the definitive Reed-Sternberg cells would show - yet they didn't find those

So, those are some things to keep in mind while you wait for Thursday to find out for sure. Good luck and let us know how it turned out for you :)


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